Another UC Diary

A Year Gone By

2011-05-24T23:20:00.000-04:00

One year ago today, I was having an IR drain removed, being readmitted to the hospital, ultimately removing my jpouch, and receiving a permanent ileostomy. The nervousness about the situation, it's direness, and pain that went with it was truly the most trying time in my life. I typically don't honor anniversaries with nary a nod, as I feel each day is it's own celebration, but somehow, this feels slightly different. The severity of how sick I was, the time pulling through ICU, and the long recovery even after returning home has kept my mind quite busy over the past few weeks.

Life has returned to normal - at least what we consider normal, and we spend more time looking forward than looking backwards or looking into just the next day or the next week. I have little regret about the decision to moving to a permanent ileostomy and have been able to do all the things I had done before - including being less tied to a bathroom. Bike riding, working out, even rock climbing - and other than making sure I've emptied my bag, there is no urgency and "Uh oh", and more focus on the tasks at hand.

I thank all the family and friends that helped me through the past two years, and most importantly, my wife who has been with me through the thick of it all. As much as I love to write, I find it unnecessary to send updates as frequently as I had (as can be easily seen from the past few months) and usually don't have much to say except that things continue to be well. I hope that this finds those that are suffering through their own personal trials on a road to recovery or a bit of peace.

A New Year

2011-01-04T23:40:00.000-05:00

This is the time of year when people seem to make some promise to themselves or others to somehow turnover a new leaf, do the things they didn't do the year before, or get on (or off) a given "wagon". I've often wondered how this simple switch of a digit generates some sort of magic to make things so different. Being close to the finance and retail industries, I see how this can affect bottom lines, possibly compensation, but nothing more than dollar signs, and not necessarily for those waiting for that "magic".

At the end of the day, the magic isn't date related, somehow driven by a crystal ball falling on top of a building, or thousands of drunkards gathered in the freezing cold. It is driven by our own desire, the need for something different masked by the hope that we can be driven by something greater than our own will. We hope the new year will somehow wash away days, weeks, months of excuses from the prior year and we will be revitalized with new vigor to put them all at bay.

We do not need to wait for that mythical moment to make a change, to make a difference, to change our outlook. We have the power every day to make it happen, to leave those excuses behind. If it's good enough to have as a resolution on January 1st, it's good enough to have on June 12th. Take advantage of the time you have and make the most of each day - you only get so many of them. Don't dwell on the things you don't/won't do, it only saps your energy.

Clear your mind of those things gone by
You can't change the past, why even try
You can build upon all you've learned
You can start today.
- Lifeson

Double Check Your Clip

2010-12-19T21:04:00.000-05:00

Well, after mentioning just yesterday I only had a few leaks, I had my best leak yet. After using the restroom at lunch in a restaurant yesterday, I must have, at some point, forgot to check my clip was closed. It didn't become obvious at first, until I stood up about 20 minutes later (after some great Mexican), and felt a warmth in a spot I shouldn't. As I made a break to the restroom, I felt my clip somewhere mid thigh: I knew at that point, that was all she wrote. Sure enough, it was open, completely, and ran down my leg.

Thankfully, denim is a little more resistant than I thought, and after some cleanup (thank God for a fully stocked bathroom), it still looked like I had at least wet myself down to my knee. My jacket wasn't long enough to cover up the whole thing, so I was pretty much reserved that here we go! We were completed with dinner and leaving anyways, so I walked through the joint, coat in hand and just went with the flow. All we could do was laugh on the way out and chuckle at how the mall "was gonna be a little delayed" and "did it just warmer in here?" A load of laundry and a quick shower and the episode was behind us.

Other than a few obvious stares, it's really nothing to deal other than your own embarrassment. Don't let it eat at you: Normalcy is a state of mind - Have your own state. Be comfortable in your skin and learn from that moment. Bet I'll remember to double check my clip from now on and I'll always have an entertaining story to tell (and retell!)

Home for the Holidays

2010-12-17T13:31:00.000-05:00

I've been away from making updates over the past few months, even when it wasn't going all that hot. Save the three random episodes of "blockages", hospitalizations, and NG tubes back in late August and September, things have been well. I've been putting on weight, golfed several times, and work too many damn hours.

It was a long haul after the surgery in May, especially getting strength back. Having the ostomy is not that invasive to my well-being or things I want to do. Pants are tough to find to fit, especially when you have no butt to fill them, but if that's all I have to worry about, I'll take it. Two leaks back in August and one last week, but all near home and typically after eating bananas and rice (go figure). Once you get into a routine, you just do it and don't really think about it. It doesn't really affect my mental state and it's much like showering: You don't really think about it. (And if it's all over the place, you laugh it up, clean it up and wash your hands!)

There has been some minor erosion around the stoma and it doesn't protrude as much as I would like, thus the more frequent changings. It's unlikely I'll have it addressed anytime soon, if ever, if it continues to be minor. I can live a lifetime like this, so let's hope it continues that way. That, and my surgeon is tired of seeing me: Our twelve weeks apart will be the longest ever and I'm sure we won't be missing each other when we do convene again.

I may go back and fill in some of the prior months dealings, especially with the admissions to the hospital. Otherwise, this little journey may stay in our rearview mirror. I still receive updates, so feel free to contact me with any questions or updates or what's new in comments or email.

Happy holidays to all of you and your families. These are the times we live for - enjoy them, for they are far too infrequent and fleeting.

- J

Back to Work (and Golf)

2010-07-20T15:33:00.000-04:00

Just had another followup with my surgeon to look at the progress of the irrigation wound. Last evening, (and today) we were unable to get any packing in the wound and my wife was unable to get even the stick end of an applicator in as well. The doc is happy with its healing and noted it won't need packing and only dressed if it leaks. He noted there was extra skin build up around the anus, but isn't an issue, unless it becomes bothersome. If it does, then we would look to actually have surgery to remove that extra skin: I haven't been on a bicycle or tried running yet, so those are the two likely aggrevators. He noted he wouldn't do surgery until at least next year, so let's hope it isn't bothersome.

I don't have another followup for another six weeks, which I think is the longest we'll go without seeing each other since our initial consultation 16 months ago. I've got the thumbs up to go back to work and for any activity, including golf and swimming: Considering those are the two activities I'm looking forward to most, that's a huge plus.

I'm still fighting with a fungal and bacteria skin infection for the last few weeks. It doesn't seem to have affected the wounds, just extremely irritating with the itching. After a nice course of oral antifungals, I'm back to taking a short course of antibiotics to help with the MRSA. Other than a nasty sunburn as a result, everything seems to be on it's way out.

I don't expect to have much to report over the next few weeks, as I don't have many doctors appointments (at least none that are GI related.) It seems as my health is getting better, I have less and less to report. While this is definitely a step in the right direction, it's amazing how this writing has been a help, both morally and spiritually. It will be something that I will miss. Let us hope the next few weeks are uneventful and we'll see each other again in August.

Slow and Right

2010-07-07T11:32:00.000-04:00

I had a followup appointment with my surgeon last Friday to check the progress of the wounds and their healing. The irrigation wound has closed to the point it approximately 2 inches deep. It's width has also decreased, as we can only fit 1/4" packing into the wound. This has unfortunately increased the drainage, as the packing doesn't have the same absorbing power (I'm going to guess 25%.) The anus is having issues closing, so the surgeon was kind enough to put some sodium nitrate on the one side to remove some of the excess skin: Take note, this was quite possibly some of the worst pain I've ever experienced. It was like sitting in a bowl of acid for two days (kinda reminded me of the bile days with the ole J-pouch!)

They were happy with the progression, but noted that the healing of these two wounds doesn't always go as planned due to A) the depth and B) the area it's located. As a result, there's a possibility that I'll need to have surgery to close these wounds. Technically, I think they "could" do in the office, but I'm pretty sure they want me knocked out due to the pain it causes. (Yes, it's tender down there.) We'll know more when I have my next followup on the 20th.

I have only a few more days left of the steroids (down to 2.5mg/day) and then we'll be drug free. Coming off the steroids has been sort of crappy, as my entire body hurts and I'm exhausted all the time. I'm hoping this goes away over the next few weeks as my body remembers how to make it's own. I've been off the pain meds for almost 2 weeks, except for after the sodium nitrate burns from last week. The pain is manageable, when necessary, by Advil or Motrin.

We visited with my ostomy nurse (Ostomom) on the same day to have her checkout the stoma. She was happy with how it looked and noted it wasn't as bad as I thought. Regardless, she noted that the surgeons wouldn't do a revision for at least another 4 months until this one healed and I was back to strength. I guess we'll see how this stoma works out.

I've been in contact with both Hollister and Convatec (two ostomy suppliers) to get samples and see which works well. Convatec has created new "slim" versions of their Eakins seals, which seem to work quite well for the flatness of my stoma. I do like the versions of their Durahesive wafers which are modable, making the application a little easier. Both ostomy nurses from those companies were fantastic in offering suggestions for their supplies and sending out samples over night! I personally like the Hollister bags better, but the wafers are more important. I may give another call to see if I can get smaller wafers to see how they hold.

Sitting has become a welcome treat, but I can only do for about an hour, typically while eating, before it becomes too much. I can lie on my back for much longer periods of time, which makes for easier sleep and rest. The World Cup and Tour de France couldn't have come at a better time: There's not much to watch after midnight, but these re-runs sure keep me entertained until I pass out. Until next week, enjoy the Cup run!

Magic Tricks and Erosion

2010-06-24T21:06:00.000-04:00

For the most part, things have been progressing well, ableit slowly. The infection wound is a blast to pack (note sarcasm here.): The pain is quite intense and different than most pain I've felt when my wife or nurse is packing gauze in my left buttocks. Removing the gauze is not nearly as intense, but still hurts the same. The only saving grace is I get to entertain myself by chuckling "Nothing up my sleeve" while I magically make a foot of one inch cloth appear from my behind. Thankfully, the pain typically goes away after about 1/2 hour and is then just uncomfortable. This isn't true on all days, but most.

I've been thankful to be able to sit for dinner the past few days, if only 15 minutes on my special cushion. Unfortunately, that typically induces a decent amount of pain afterwards and some drainage, so I avoid doing it for other meals or times during the day. Without the drain, though, I can at least lay on my back, which has helped with sleep somewhat. That has been a real challenge over the last few days and drives me to multiple naps during the day (and some morning grumpiness.) Having my son around to pick things off the floor and run little errands for dad has been helpful too: He's always excited to help and I'm always willing to oblige.

One thing that doesn't look like it's progressing well is my stoma: It has shrunk, which is good, but has become flush on the left and bottom. As a result, normal appliances won't fit. I unfortunately waited a few days too long to change it last time and I've started to get some skin erosion around those areas. This is quite painful and can lead to some nasty situations and a vicious cycle of open wounds around fecal matter: Yes, it's as good as it sounds. I've been in contact with multiple ostomy nurses from the major appliance manufacturers who have been fantastic with their assistance and sending out samples to try out. If you have a need for assistance or want to try a different brand, I recommend calling: They are very helpful and also call to check up on how your are progressing.

I'll have to keep an eye on this: If this continues to worsen, there's a good chance I'll have to have it surgically revised to get it to protrude more. It may not be necessary if I can manage with appliances, but if not, then surgery will be next option. I would prefer it to be protruded, as it makes it easier to manage and change appliances. Sometimes too long is bad too, so it's a juggling act of weighing what you have against what you're gonna get. Also, I don't want to continue to throw more pieces of my bowel out the window unless really necessary: Sooner or later, you run out of tube, and that is the least ideal situation.

Packing It In

2010-06-19T07:29:00.001-04:00

Yesterday I had my followups with my surgeon and Infectious Disease. The surgeon was happy with the drainage around the irrigation wound and removed the penrose drain that was still in there. It was an odd and painful feeling as he pulled the tube from my buttock: It's odd to have that feeling so deep under the skin. The drain was only about three inches beneath the skin, at this point, as the rest had healed and pushed the drain outwards. Afterwards, the nurse had to pack it using gauze, which wasn't all that bad, although we get to pull a rabbit out of the hat today as we remove it to clean and debreed the wound. Now THAT sounds like fum! (For my next trick... Trying to figure out how to manage pictures or video of this one.) My wife was able to visually inspect with the surgeon poking around and the wound has shrunk to the size and depth of my pinky to index finger. It's closing well, so let's hope it continues down that track. The sensitivity around the lower lapo site (the larger one) is to be expected and take a while to heal. I can feel some of the scar tissue so it wasn't bowel or anything of concern.

He also removed the sutures from the anus. I remember the fellow that removed the JP drain in the hospital (Making Progress) that the area is sensitive. My, oh my, yes it is. I guess on the good side, that means that most of the nerves in that area are functional, which is good, considering it controls so many other functions, such as urinating and anything from a genitalia perspective (thumbs up). The downside is holy crap is it sensitive! There were only four or five sutures, but it felt like I was being reeled in on a fishing pole with a shark hook.

The appointment with Infectious Disease was pretty quick. They verified my numbers were stable and the high white cell count was due to the prednisone. I guess we'll be able to confirm that once I'm off the prednisone! The hemoglobin is coming back slowly, and no concern from their side. He was able to confirm that since I came off the antibiotics, this wonderful rash around my groin was fungul - jock itch. Awesome: Let's tack that on to the fun. I look like a monkey as I have one hand scratching in the front and one hand scratching in the back. When asking him if I was healthy enough to eat sushi (which I miss terribly), his response was "Wait a minute. You're asking an Infectious Disease specialist if you can eat sushi? Raw fish? Are you sure you don't need to the psychiatrist next door? I'm not signing off on that... That's all you! The last thing you need is a tapeworm" Well, geez, since you put it like that: Now I can't figure if that's a yes or a no, but considering I ate it before, I should be good now: He's got me a little freaked out though!

I'm up to walking about a mile and quarter (one of the loops around our development) per day. The sutures were bothering me during those walks so hopefully with them out, I'll be able to increase the pace (30 minutes for 1.25 miles isn't motoring) and hopefully the distance. It's great to be outside and to be vertical. Laying down for a majority of the day is starting to become a little annoying. With the drains and sutures out, we should be sitting here shortly and hopefully decreasing the pain meds!

Waiting to Sit

2010-06-16T19:18:00.000-04:00

My strength is slowly coming back, allowing me to be a little more active throughout the day. This may only entail a single walk around the block, but it's much more than up to the stop sign it was last week. The pain in the drain and the stitching has gotten a little worse with the activity, as is in some of the lapo sites, but I'll take that knowing that I'm moving more.

I'm eating like a horse and starting to eat those things I couldn't eat before with the JPouch. This entails small bits of cheese (hey pizza or subs), Boost energy drink (yeah protein), broccoli (hey green veggies) and chocolate (omg, thank you.) This unfortunately has increased my output, but I'll take the trade-offs. Once I get back into the swing, I can manage that with Immodium and that's one drug I don't mind taking.

I ditched the antibiotics on Saturday and only have the steroids to go. Unfortunately, I've developed a nice little rash, something of the jock itch sort, since I've come off them. Can't say they are related, but ironically around the same time. Let's hope a little Gold Bond and A&D takes care of it. No more pills please. Being of the antibiotics has softened my output as well (not sure which has more of an impact): I've started on some probiotics to try and get some good stuff in me, considering I've probably nuked all the flora in my system in the last 7 months. Here's to having some severe gas! Nice to now I only have to burp the bag and not try to figure out how to pass gas without crapping my pants. Ileostomy 1, JPouch 0.

I had blood drawn yesterday, but won't find the results until Friday when I have my followups with Infectious Disease and my surgeons. Not sure what to expect during those visits, but that's half the fun now isn't it. I'm still not sitting, although was able to manage in the car for the short drive to get the blood drawn. Let's hope that Friday goes the same: It's longer and bumpier.

Good luck to the USA WC football team: We need a win to move into bracket play!

World Cup

2010-06-16T19:08:00.000-04:00

Finally, something non-UC related! Let's talk World Cup. The first week is over and all have played their first matches. What have we learned this week:

No matter how good you are on paper, it doesn't necessarily translate to the field. e.g. Spain.
Even if you have great skill, show a little dignity and not take dives like a wimp. e.g. Portugal (Ronaldo) and Uruguay (Suarez). I will be rooting against these teams and players and hoping for some really good hacks requiring substitutions.
Even if you are not that good, you can still have some pride. e.g. North Korea. They don't take dives and even if they get hacked, they don't embellish and get right back up. They don't take unnecessary fouls and play like real men. Can't believe I'm saying it, but hats off to them and I'll be rooting for them this year.
Speed is a huge benefit. e.g. South Korea. They may not be the most talented, but these guys can cover ground like no other team out there.
Soft goals still count, but don't necessarily make you feel good. Who cares, you don't count goals, you count points. e.g. USA and Netherlands (let's be honest, you didn't need help from Denmark, but it still counts)
A ton of ties makes for interesting second and third games, as many teams still have a shot to move onto single elimination. Only one real upset (sorry Spain), so the cards still look stacked for the top 5 or 6 teams.
DVR is a gift from the gods. Being off work, recovering from these past surgeries has definitely made it easier to watch the games. I haven't missed a minute of a game yet and based on my expected recovery, I could actually see every single game: That would top my previous viewing from 1994 where I saw 62.5 of the 64 matches. I guess you have to have goals, right?

Here's to another great week of football and 16 fantastic games.

Another Thumbs Up

2010-06-11T21:40:00.000-04:00

Today, I saw my surgeons for my first followup since surgery last week. They are happy with the healing across the board. The JP opening is closing nicely and is looking healthy. The sutures around the anus are a little swollen due to the surgery, but should subside as time goes on. At some point down the road (few weeks), these sutures will actually have to be removed as they don't actually dissolve. Somehow, this doesn't sound like much fun, but here's to pain killers.

The penrose drain is still in and will eventually work it's way out. They trimmed up the end today so there is less hanging, but there is little drainage compared to last week. This is mainly because the irrigated site is now healing and when they first irrigate, the drain does it's job by allowing the irrigation to seep out. Once the drain falls out, we have to pack the wound. I actually got to see it this morning it's much bigger than I thought: It's about the size of my thumb in my left buttock. How it doesn't hurt more, I have no idea because that's a damn big hole to have in your body. They mentioned that is highly likely that I'm going to have a scar there, but considering it's my buttock, I can't see it, and it's unlikely I'm in the market for an ass modeling career, I'm not too concerned, as long as it heals and doesn't impact me.

I'll be off the zyvox (antibiotics) in the next two days, which is a huge step. Hopefully, the body is okay with it and we can continue forward: I've been waiting to be off these things for 7 months now. We are tapering the steroids over the next 3-4 weeks. Again, a huge step after being on them for the last 7 months as well. Let's hope we can rid ourselves of these drugs: Now to me, that's living.

I met with my ostomy nurse ("Ostomom" we've affectionately named her) to go over my stoma changes, stomach changes, and best options for ostomy supplies. As always, she was flying with options and things that would work best for me. She had a few extras and gave them for me to try over the course of the next few weeks. She thought that using a convex wafer was our best option, especially with my changing stomach and my shrinking stoma. She isn't too concerned about the "height" of the stoma, considering it's still protruding from the stomach, just not as much as we'd hoped. Her thought is the stomach is still a little distended and swollen from surgery and as I return to 'normal", this should allow to stoma to "stand up". Honestly, at the rate I'm eating, I'm not sure that I'm actually going to continue to lose weight. (Need to see where I'm at actually, was down to 145 lbs the other day, which is still pretty high, considering the past two weeks.)

The pain today has been through the roof. Traveling to the hospital in the car was terrible, but coming home after the surgeons worked over my backside was agonizing. Popping percocet didn't even cut it: It was just a matter of struggling through it. Once home, lying down in front of the World Cup matches definitely helped and allowed the pain meds to kick in. Thankfully, that's behind me at this point and here's to the weekend being smooth. Not sure what it's going to be like as the drain works it's way out, but we shall see.

World Cup - If you aren't watching, you missing the greatest sporting event ever. USA vs. England tomorrow. Now where did I put the face paint from Halloween?

Sprung a Leak

2010-06-10T08:00:00.007-04:00

We got the results from my blood test yesterday and things are heading in the right direction. My white blood count was still a tad high, but lower than it was when I left the hospital last week. They think this may be a result of still being on the prednisone. My hemoglobin was still a little low, but higher than it was upon discharge. They expect this to continue it's rise as I start to eat more and regain more of the blood lost while I was bleeding out. Again, all in due time. I'll have another CBC next week to compare the numbers and see how they compare.

While trying to clean out my bag last tonight with a little water, I sprung a leak around the wafer. Not sure how long it's been there, as my output has been so thick, I don't think it would have actually worked it's way out. I haven't been using water to clean it out, as I'm not offended by the smell and the thickness just means a little left over each time. Go figure! It took a little longer than expected, especially at 12:30 AM and after the Stanley Cup game (go hawks), as I had to reshape the opening as my stoma had shrunk quite a bit. It's also closer to my skin and hope that it doesn't start to invert: I really do not want to have a revision to make any changes to the stoma. I'm hoping she just heals nice and perfect. [Yes for some reason, it's a female, like a car, or a boat. I can't explain why, it just happened that way and stuck. Yes, I have some entertaining jokes that go along with this, but I'll spare my female readers but know my wife slugs me for it.]

I'm hoping to see my stellar ostomy nurse tomorrow with my surgeon to discuss the stoma and other ostomy options. I worked in a belt today to help the wafer stay on, much like when I had my temporary and my convex wafer. I may have to go down that route for this one as well: Just the nature of me being skinny and my stoma. It's not much different and the belt helps hold the bag on. I think this was the main reason I had no leaks or bag failures with my temporary last year. Why buck a good thing! My plan is to contact the different ostomy suppliers and get some samples and test drive a few other products. Considering I'm going to be rocking this out for life, I might as well get the product that works best for me and one I like.

Thumbs up

2010-06-08T20:00:00.007-04:00

Today, we met with Infectious Disease to get a check on my numbers and see how things have been going. Looking at me, they couldn't believe that I was sick as I was the week prior, and other than being a little skinny, they were happy with my results. I am still awaiting to hear my latest blood test results, but all signs are feeling like they are going to be good. I have to stay on the Zyvox until at least Friday until I see my surgeon and determine how long they agree for me to be on it. (I guess there was a little headbutting about that when I was discharged, so it's a "joint" decision.)

I have been able to get in and out of bed a little easier each day and now alternate legs going up and down the stairs. I only have pain around the penrose drain in the buttuck and the lower lapo site in the stomach. I made it to the mailbox today to shoot the breeze with my neighbors, but after about 45 minutes, that was vertical enough and I had to go in and lie down. I do get stronger by the day and I just "feel" better. It's tough to explain, but even being this weak and the pain, my body just seems to be comfortable: I have no idea if it's mental or physical, but it definitely helps me mentally. I haven't been in this good of spirits in a while and I'm always in a good mood!

My wife has been a champ changing the dressing on the penrose drain. It's been nice to get into the shower daily and just be clean (no, she isn't joining me...) We aren't sure how long this is going to be in, but the sutures finally blew out last evening, which was quite painful, but it feels bettter today: I'm assuming now that the sutures aren't tugging, it's just waiting to come out. We have no idea how long it is or when it will come out, but we'll get more information when I see the surgeons on Firiday. I can't imagine how people do this by themselves: I can't see it without two mirrors and trying to tape all this together would be impossible (or at least very difficult.)

Today was the first day I tried to sit, and that was only because I had to get into the car. With the cushion, it wasn't terrible, but it was far from enjoyable. Sitting on anything like a chair or an examination table (skipped that one) is painful unless I try to seriously skew the buttock I sit on and that just makes my back and hips angry: Standing is the best option other than lying down. I have a feeling this is how it's going to be until this drain is removed.

My appetite has returned with vengeance: I had a panini today with cheese on it and it was heaven: Being away from dairy for the last seven months made me savor every bite. I can't wait to be back to one hundred percent and eat whatever I want. Soon, but not right now, but we'll get there. Every day is progress, even if it's baby steps. It's not much to count in quantity, but the quality is great. The stoma has been working as expected, the output is thicker than before, and the pain is manageable. Now that's a thumbs up.

Discharged and Thankful

2010-06-03T11:34:00.002-04:00

Yesterday, I got the thumbs up and was released from the hospital. Over the previous two days, I was able to get out of bed more frequently and make more trips around the floor. It definitely helped with the edema, but I'm still very swollen; more swollen than I had been in my previous surgeries. I haven't been nearly as active this time either, but looking forward to that changing over the course of the next week. I'm still limited in sitting down with the wound and penrose drain in the buttock: My hips are starting to complain as they are getting worked more than they have in the past as well. I have been able to sit on the toilet, albeit a little shakely and start getting the hang of the ostomy bag again. Can't say it's like riding a bike, but the tricks I had before are slowly coming back to me.

Infectious Disease was happy with the cell counts as they continue move in the right direction. They also noted that, had I been a little older, I would not have survived this little adventure. Looking back, and speaking with other friends in the medical profession, that night after surgery was a lucky night. Not many people survive having blood pressures that low, especially while being septic. They also noted that's why I couldn't get any pain management, as they were concerned about giving me anything that would drop my pressure any lower than it already was. My wife and I were completely unaware of how bad the situation really was, although it may have been for the better. I think my wife would have liked to have stuck around knowing if I was in that bad of shape, but since it's all worked out, we got lucky. Not sure if I cheated before, but I squeaked by this time, and I'm very thankful for it.

We had to work with case management to get on a PO version of the antibiotic so that I did not have to have a picc line installed. Thankfully, my insurance covers a decent portion of the zyvox pills. Having to deal with a picc line isn't the worst, but another possible source of infection seems to be a little against what we're trying to accomplish here.

I'm still left with the penrose drain in the left buttock where the infection site was. The bag they had placed over it to catch the drainage, which is also subsiding, has been removed. Now, we merely have to dress it daily to keep it clean. Unfortunately, with the MRSA infection, anything that comes from that area is "diseased" (that's how my wife looks at it) and has to been given a little bit of care. We've always washed our hands before and have been good with hygiene, but for now we'll have to be a little more diligent and aware.

The trip home was quite uncomfortable, but safe. I had to lay the passenger seat all the way down and lay on my side again. Hurtling down the highway, unbelted, after going through what I just went through, all I could hope for was to arrive home safely: If something were to happen on the way home, that'd be too ironic to make even me to chuckle. Once home, I was too exhausted to even watch game 3 of the Stanley Cup finals, which were tied at the time. At the base of the stairs, the top seemed like one of the harder climbs I had done, to which my wife chuckled "Good luck with that!" Yeah, and needed it. Stairs are good exercise and we'll try to exert those as necessary in the upcoming days: They are a leg/core killer and I don't have that much strength yet. Getting into / out of bed has been tough, as it's much higher than a hospital bed, but we're trying all kinds of positions, pillows, wedges to make sleeping at least possible. Benedryl worked wonders last night, but gives me the oddest of dreams, some of which keep me awake. I've been able to manage the pain via pill form which has been good: Let's hope my activity at home doesn't put me through the roof.

There is nothing like being in your own bed, no matter what it takes to get there. My wife even moved to another room to give me the whole bed! (although I think that's more so we don't keep each other up at night.) I love being home and I love being alive. Here's to each day getting healthier than the one before it.

Making Progress

2010-06-01T18:40:00.000-04:00

Sunday evening the foley came out. It is a wonderful thing to not have a tube tugging on your sensitive parts, especially with enormous edema (yes, enormous is the word to use here. Even the male nurses were impressed.) The downside is having to empty 400cc every two hours into a urinal. Kidneys came back online in full force and slowly we're ridding the water weight. Since then they've greatly cut my fluids as well, as my water intake by mouth has been more than sufficient. Also, I'm losing less water via my stoma, which is fantastic compared to my previous surgeries, and having more through the kidneys. I'm not sure if this absorption is due to the pain meds, but we'll figure that out as time progresses. Let's hope this is how good an end ileostomy is compared to a temporary.

I finally started to eat solid food yesterday. Mashed potatoes are a staple at every meal and some protein. It's fantastic. The people who complain about hospital food have never gone a week without eating or really don't know what they should be appreciating. It's not five star, but it's much better than nothing and I know it's better than many other people get on a daily basis. My appetite has been quite lacking though, which they say is a result of the infection: It's going to take a while to get back to "normal" after being septic. It's still lactose free and GI soft, but baby steps: One reason I chose for an ileostomy was to go back to eating all the things I love. This is a long-term gain and we'll get there.

Yesterday, they took out the JP drain that was in the right buttock and assumingly draining the surgical work done on the anus. This, by far, was the greatest pain I have ever experienced. The doctors explained this area was highly sensitive (go figure) and unfortunately, can cause severe pain. Right they were. I'm sure the people on the floor, and possibly outside, thought that someone was being murdered. I'm not sure how long it continued, maybe a minute or so as they worked out the sutures and the actual tubing, but it felt like a lifetime. I was thoroughly exhausted afterwards and didn't do a lick of work. Thankfully, I had taken my pain meds just before we had our little adventure and I got to pass out shortly after.

I've been able to get out of bed easier today and even had cloth baths over the last two days. My wife has been amazing through this process and dealing with not only my stench (hey, I've been bed ridden) but all the reworking, she seems completely unphased. We've had some walks around the floor and I can slowly feel my strength returning. It's no where near what it should be, but getting up and down is at least manageable on my own now, albeit slowly.

My bloodwork is showing progress across the board. The infection seems to be under control as my white blood count continues to drop. My liver numbers are stable, which is amazing considering being septic last week: Oddly enough, after each of my surgeries, my liver numbers always returned to normal. Maybe I need to adjust my diet? This is something to be investigated. Potassium and magnesium were a little low again, but on the rise and now with eating, expect to be normal today and no more drips: This is good, as they burn like hell when being infused into the arm.

All in all, I am trending in the right direction. The docs are happy and there's a good chance I'll be able to leave either tomorrow or Thursday. I haven't asked, so I'm waiting to hear. No reason to rush out of here to only return. Let's get it right the first time.

Food and Water

2010-05-30T12:00:00.002-04:00

Yesterday, the surgeons gave me the thumbs up a for liquid diet. That was quite thrilling, considering I hadn't had anything to eat or drink since last Sunday. It also gave me the ability to drink water which is another huge plus, as even though I was getting pounded with IV fluids, my mouth was still incredibly dry. Waiting to see if I'll get onto a soft diet today or tomorrow. Mashed potatoes... yummy.

My blood pressure has stabilized and now has three digits on the top. They took the central line out yesterday as they were happy with the numbers and wanted to minimize the chance of another infection. It was kind of nice having that line in there, as they were able to just pummel me with all kinds of drips and there was no burn that I get in my forearms. Oh well: I'll take the burn rather than a picc line infection!

The foley is supposed to come out today sometime, but I've still got a ton of edema to get rid of. It's nice to kinda cheat and not have to get up or really control the liters of urine that are pouring through the kidneys! I was able to get out of bed yesterday, but it was quite a struggle and definitely painful. My strength is still low and just standing is a chore. The pain management has been okay, as they started me on percocet by mouth, but it doesn't last all 4 hours. As a result, I'm still mixing in demoral in between to keep the pain at bay. I'm hoping we can get this under control before I get released, as I won't get to give myself IM shots at home.

Today the blood cultures confirmed the infection to be a resistant staph infection: MRSA. As a result, I'm now on isolation restriction and everyone gets to wear fancy little gowns and gloves when dealing with me. I have to think this isn't the greenest way of dealing with patients, but it at least keeps them safer. I'm not really at any risk (I already have the infection), but I'm a risk to those around me. (Gee, way to feel like a leper!) They cut out all antibiotics but the one necessary for the staph infection: vancomycin. This is a benefit from a fluid perspective, as I was receiving four antibiotic drips before every 12 hours. Mixing in the potassium and magnesium (which were also low), I was getting little IV throughout the day, but when I was getting it, I was getting it at a pretty good flow rate.

The goal is to get out of bed one more time today and at least go for a little walk. I won't be breaking any land speed records, but I'd love to get off my right side and try being vertical for at least a short period of time. There's only so much TV you can watch and I'm pretty much at that point now.

Out of ICU

2010-05-28T20:00:00.001-04:00

Today, they moved me out of ICU into a monitored floor where they put the colon and cardiac patients. I was here last year for my surgeries and actually had the same nurse today that I did last year. There's a lot of friendly faces, so it's comforting to be here. (I did have some bad ones last time, so I'm a little concerned if they show up, but let's see how it goes.)

I'm incredibly weak and exhausted and still haven't managed to get out of bed yet. Thank god for the foley and the stoma: Everything just shows up in a bag somewhere. I'm not eating yet, but hopefully by this weekend, as the bowels seem to be working now, unlike my past surgeries where it took a while for them to wake up. I've been setup with two drains, both in my backside. One is a penrose in my left buttock that is draining the infection site. They had to take a nice chunk of tissue out of the site as well due to the infection. There is a Jackson-Pratt drain in my right buttock to help drain where a majority of the surgical work was done around the anus/rectum and where the abscess and JPouch was removed.They put an ostomy bag around the penrose to catch the drainage from the infection site. I call it my "tail", as it's about 2 feet long and hangs behind me. We'll see how much fun this is once I get vertical. This makes being in bed a little difficult, as being on any of my backside is painful, so on my sides it is. My hips are a little irritated by all this, but frequent shifting removes some of the discomfort. Hopefully, once vertical, this will be a little easier.

The optomologist stopped by today to check out my eyes. At some point along this journey, I broke blood vessels in both my eyes and blood has started to pool around the iris and take over the whites in my eyes. Depending on what side of the bed you're on, I either look completely normal or like I'm hemorraghing through my skull. I can't see it, but my wife got some pictures so I could check it out. (Yes, I have pictures of the drains as well. Hey, I can't see it from my view point!)

The fever has broke and has not returned since yesterday, so that's a good sign for the infection. My blood pressure and volume has returned to normal, as well as my heart rate. It's nice being stable! The full body rash has also subsided: Infectious Disease noted that was either from being septic or the reaction to the morphine. One more pain medication that I won't be on again. Can't say I'm disappointed, because there surely are better ones than that lollipop/candy cane of a pain med. Good for short term, but aweful for long-term in my eyes.

Now, we'll look to trying to get out of this bed. I'm not necessarily sleeping, but my eyes are pretty much always closed. I can't remember ever being this tired. Pain management has gotten much better today: Being in pain is the worst feeling in the world. And that's saying something considering I haven't had anything to eat or drink since Sunday. I'm still being pounded with fluids and swelling like a tick. The kidneys are a little slow to respond and most is outputting through the bowels: This happened with my past surgeries so hopefully this will switch up pretty soon and I'll start to alleviate some of this water weight.

Post Op and ICU

2010-05-27T19:48:00.042-04:00

I got out of surgery around 10:30 PM. I remember waking up on the table after intubation and gasping for air as I had a huge amount of phlegm in my throat. The first few seconds weren't bad as I thought I could cough them up, but as it continued, I was really struggling for air until they were able to suck it out or squeeze it out: Shortly after that little adventure, I blacked out again until waking up in recovery.

I was in a terrible amount of pain and they were having a difficult time managing it. My blood pressure was severely low, at around 60/40 at the lowest that I can remember, although my wife seems to remember a 50 mixed in there as well. My heart rate was racing around 145 BPM. My wife and I chalked all of this up to the pain and the surgery, but at the time, they weren't telling us how severe the situation really was. I was conscious over the next four hours as they managed me in post-op recovery until they could get me into ICU. The doctors and nurses were coming in and out as they monitored me, but mostly it was just my wife and I, with me doing a lot of moaning.

It was about 2:30 AM on Thursday morning that they finally got me upstairs and my wife headed home for some sleep as she had a pretty long day waiting around while I was carted from floor to floor. Once in ICU, the docs were still concerned, although at the time, I could only see the looks on their faces and not really what they were concerned about. Not sure why I didn't ask... I'm pretty nosey: Assuming the pain sort of distracted me from the rest of my environment.

The docs decided to insert a central line into my jugular to better monitor my blood volume and prepare for a blood transfusion, should I need one. I was conscious for this process and got to ask the one doctor all types of questions while the other was sterile and actually dropping in the line. I must say, this was one of the more interesting points in my life, as I started to realize at this point the criticality of the situation, yet somehow disappointed that this wasn't being taped. (I obviously couldn't see it as they were putting the line into my neck. This may sound odd, but how often does this type of stuff happen?) I remember the CVP number starting out at 2 or 3, which the doctor mentioned wasn't so good. Once the line was in place and adjusted after a few x-rays, they immediately hit me with IVs to the central line at a wide open rate.

The rest of the morning is sort of a blur as they started to administer pain medication and I floated in and out of sleeping. As today has progressed, my blood pressure has increased, if slightly, to where people don't seem to be freaking out about it. Infectious Disease was in again today to discuss the issue with the infection, which we are still trying to narrow down. They have started hitting me with a bulldozer of antibiotics, around 4 I think, to try and cover many of the bases that they think it is. The final results of the cultures won't be available until tomorrow: At that point, we should be able to choose the appropriate antibiotic for the infection and move forward from there. The fever seems to have broken sometime this morning or afternoon with only a slight spike, so the irrigation from last night, as well as the antibiotics seem to be working it's course.

I have a feeling I'll be getting to stay another night in the ICU as they get my blood pressure and the infection under control. I'm not in a hurry to leave, as the care here has been really good and the nurses have actually been quite entertaining. My father always said you should take care of your nurses: They not only administer the needles, they also administer the pain medication. Remember to tip your waitresses!

Prepping for Surgery

2010-05-26T14:00:00.049-04:00

Last evening was very difficult again with pain as they had to increase my morphine and decrease the time in between injections. Taking four mg every two hours seems to control the pain better. I am not sure why they are not going with other pain medications, but I'm not an expert and I will take what I can get at this point. My fever is still increasing and does not look like the IV is going to control it.

I decided to completely forego having the jpouch at this point and instead have a permanent ileostomy. I will not say the decision was easy, but after years of contemplation and now a year of being unhealthy, this is the path I prefer. When I had my temporary ileostomy, I was doing quite well: Well enough that I pushed back my takedown surgery. I could not convince myself that it was worth risking having a partially healthy jpouch and the possibility of a lifetime of medications was worth it. I have no problems having an ileostomy: To be honest, it's actually quite nice not having to worry about when I need to go to the bathroom, or when I eat so I can manage when I sleep at night. No more sore butt... that just makes me feel good. Also, I don't have to worry about what I eat either: I can do the one thing that definitely makes me smile, and that's eat. I love eating! All types of food as well and that's not something that I wanted to risk sacrificing.

I also have the ability to save some of the rectum, just in case I want to try and go back in the future and maybe try to make the jpouch work. I decided to forego that as well. I am not interested in trying to make it work - I am interested in being healthy and living life. As a result, the surgeons will also pull out anything that is left of my rectum (large intestine) and stitch up my backside. (Many of you hear me refer to this as "Ken Butt".) This also removes any possibility of me getting colon cancer, as I will no longer have any colon left, which is another plus to having this surgery. By removing the jpouch, they will also be able to remove the abscess (thankfully) and clean that mess out so it should not cause any problems from here. The sinus that you hear me speak of is part of the jpouch, so when that comes out, so does that little problem child. Ahhh.. the thought of resolution.

My ostomy nurse was in yesterday and marked where we think the ostomy should be. Considering this one is going to be permanent, I might as well pick where we want it. It should be below my belt line, giving me the ability to wear jeans and such. It doesn't mean I won't wear suspenders (maybe) considering I looked so dashing in those last year!

They also have to go in and clean out the infected mass that has built up in the buttock area. Not sure how they are going to go about this, but as long as they clean it, I'm not sure I really care. I will find this out on the other side of surgery. It seems the infection is now also spread and I'm starting to go septic. My fever is out of control, spiking into the 104 and 105 range, and I'm increasingly cold. I am receiving all types of fluids and antibiotics, many of which I stopped trying to keep track. I am looking forward to surgery and hopefully putting all of this behind us.

I have not been too concerned about the surgery, outside of the normal risks, until early this morning. My father passed away two years ago and since his passing, I have not seen or felt him. This morning, he was with me. It was a calming presence, one that could not be seen, nor one that we shared any words, but I knew he was there in the chair with me. I knew he was looking out over me at that point, and I knew that somehow, this was a little more serious than I originally thought. We have always asked for him as a guardian angel and this morning, he may have shown his role. Love ya Pop.

Decisions, Decisions

2010-05-25T18:00:00.003-04:00

We've come to find out that the pain in the buttock is now related to an infection due to the bleed out from yesterday. This is a completely new problem area separate from the abscess and one that has many of us intrigued. The assumption is there was a build up of blood as a result of the bleeding from yesterday and my body couldn't handle the cleanup. The pain has been excruciating and sitting is non-existent. I'm taking my morphine the minute I can get it, but it only cuts it for about 90 minutes before setting back in.

I've begun to also show a fever that is starting to rise, mainly due to the infection in the buttock that seems to be brewing up quite a storm. Infectious Disease (ID) doctors were in today to talk about the infection, but at this point, we don't know what type of infection it is. They've run some blood cultures today to try and see what type so we can apply an appropriate antibiotic to try and deal with it. They are going to start throwing the kitchen sink at me to try and keep it at bay.

My colorectal surgeon was also in today to discuss the options about the jpouch and the abscess. We've been fighting with this since takedown last November, and trying to get it to heal while we are using it is an unlikely battle to be won at this point. His preference is to pull up a temporary ileostomy, take care of the abscess, restitch the portion of the pouch that led to the sinus and let it all heal. This would require at least two more surgeries, similar to what had happened last year: The temporary ileostomy and then the reversal.

I know this is not my only option, as I can pull the trigger today and just go for a permanent ileostomy. Many weeks ago I had reserved myself to this possibility, as I do not care for another year of surgeries, possible issues, recovery, and so on. Life is passing me and my family by too quickly. I had mentioned at one point that I was "committed to saving the jpouch", which at that time, I was. Having gone through the last 7 months of roller coaster healing, the medications, the enemas, the steroids; I'm not sure I'm still that committed to this jpouch. (In all reality, I knew this was a possibility when I was in college and investigating having my colon removed then. This was not a new realization and one I had thought about for many, many years.)

Surgery is not until tomorrow night, so I'm going to sleep on it. I still have discussions upcoming with my wonderful wife and my ostomy nurse: The two women who have spent the last year taking care of me in one way or another. My wife, the constant rock who seems unfazed by anything that gets thrown at us, whether it be a new issue, a new wound to pack, a new drain to clean: She may not be a nurse, but she can handle anything in our household. I truly am the luckiest man in the world.

Drain Removal and Admission

2010-05-25T10:00:00.000-04:00

Well, things didn't go as planned yesterday with radiology. They went in and injected the drain with barium and ran some x-rays. The abscess had drained completely, thus the reason there was no longer any output. The sinus cavity into the jpouch, however, was still there. Beit that the abscess had drained, the drain had done it's job and was okay to come out.

This is when it got interesting. As they removed the catheter, a blood vessel was nicked in the process somehow. Whether this was the result of my pain or not, we'll never know, but regardless, at this point I started to bleed profusely. The doctor was able to manage the bleeding out of the drain hole (my buttock), but because of the internal bleeding, it was bleeding back into the abscess, through the sinus and into my pouch. After losing the first unit of blood within a few minutes and a second unit of blood within another ten minutes, this is when the team started to panic. They immediately hit me with an IV in case I needed to receive a blood transfusion, and I punched my ticket for an overnight stay in the hospital.

Over the course of the next half hour, the bleeding stopped, but I was still in tow to stay the night to be monitored just in case. Just as well, as after evacuating over two units of blood in the past, I knew it was best to have the doctors keep an eye on me. I've bled out before after previous scopes, but never like this: This was a little scary, especially when I realized that they may not be able to stop it just from pressure and the doctors look noticeably nervous as well. Once the pouch calmed down and I was no longer having to evacuate into bedpans, I was able to calm down as well. It became a little comical at that point, once I realized I was going to be okay, and chalked it up to another interesting day that somehow turned out a little different that originally expected... And I've had more than a few of those.

Throughout the night and into this morning, however, the pain in my left buttock has increased, as has it's size. There doesn't seem to be any bleeding, as my hemoglobin has stabilized, but it's getting larger. The nurses are having a hard time managing my pain level as well this morning. The morphine is working for about 45 minutes, but then fades quickly and the pain sets in fast. Two mg every four hours doesn't seem to be doing the trick and we need to try something a little different.

Roto Rooter?

2010-05-23T23:02:00.001-04:00

The drain had been working throughout the week, pulling some funk from the abscess. It was mostly blood and fecal matter, meaning the sinus cavity hasn't completely closed. As of this weekend, the output has completely stopped and pain has started to increase in the buttocks area. I'm not sure if this is a result of just having the drain or if something is actually wrong with the catheter and that's also the reason that it's not draining any longer.

I have contacted the Interventional Radiology doc on call this weekend both yesterday and today. They don't have anybody in house today to manage this, but I'll be heading in tomorrow, rather than Wednesday to see what's going on with the catheter. If there is truly a pain in the ass, this is actually it.

Papa's Got a Brand New Bag

2010-05-19T20:24:00.000-04:00

... Although, this time it's not connected directly to the intestines. Yesterday I had a gravity drain/catheter put in to drain the presacral abscess. It took about 45 minutes in and out of the catscan machine while they tapped it. I have to say, it was quite interesting and only slightly uncomfortable while the lidocaine set in. The versed and fentanyl obviously helped as I'm not sure it'd be that much fun without them.

The abscess itself was about the size of a golf ball, between 5 and 10cc. Unfortunately, I think the actual sinus cavity from the pouch to the abscess is still open, as the abscess responds to gas in the pouch and is draining more liquid than just blood and fluid. The hope is the drain will keep the abscess clean so both have a chance to heal. I've been put back on the antibiotics for fear of infection while I have the catheter. This works out well (I hope) as being off them has been nothing but problems for the last week with increased bleeding, urgency and movements. I'll be starting some probiotics probably next week and see if they help the process at all.

I'm not sure how long I'll have the drain, but will have followups every 7 to 10 days to get a look at the output as well as a catscan to check out the abscess. They will also do a barium flush (through the catheter) to see if the abscess is connected to anything else (the pouch in this case.) I have tried sitting twice since yesterday with little success. Getting around has gotten better through out the day, so hopefully tomorrow will give way to more vertical adventures. Here's to a good week!

Pain, Strain, and Drain

2010-05-17T19:00:00.000-04:00

The results of the ctscan came back last week and the abscess is still there. It's slightly smaller than what it was the previous time, but still there nonetheless. As a result, my surgeon has recommended a drain be put into the abscess to assist in it's healing process. Tomorrow I will go into Interventional Radiology and have the drain inserted. At this point, I'm not sure exactly where/what/how long: Much of that (actually, all of it) will be determined by the doctor once they see the abscess under ctscan and determine the pressure build up within it.

I've been off the antibiotics now for just over 8 days and there is a noticeable difference; unfortunately, in the wrong direction. The gas build up is much more than previously experienced and urgency has definitely increased. Yes, antibiotics do work and yes, bacteria generate gas - These have been proven definitively. I'm still taking the steroids, which may be helping with the pain as it's not as bad as it's been, but still there in small doses, mostly in the evening. Swelling like a tick with edema - jowls and
cankles

Golf looks likes it may be on hold for a while: Not really sure what I'm in for tomorrow, but at least the versed should cause me to forget the bad parts. Let's see if any stories come out of this little procedure. I'll post more over the next day or so and update how the drainage procedure goes.

At Least They Work

2010-05-02T23:24:00.001-04:00

Taking the steroids once a day didn't improve much, so we quickly switched back to twice a day. Within 24 hours, I immediately felt better. As expected, I took on some swelling, crazy appetite, and wacky sleep patterns, but at least I'm sleeping and not going to the bathroom every 2 hours. Thankfully, this took place over last weekend, which coincided with travel and golf, both of which went very well. It's nice not to be sore after exercise, so steroids have that upside as well.

I had another catscan on Friday to determine if the abscess is still lurking, which I have to guess it is, as the symptoms I had before going back on the steroids was very similar to last Nov and Dec. I won't find the results until at least this week or possibly at my next appointment on the 11th. Based on those discussions, we'll have a course of action to take. At this point, I'll be on the steroids for another 2 weeks at the current dose, but will be stopping the antibiotics in about 7 days. Keep a lookout on the fever, but at least I can handle the sun: Jay + Sun + Antibiotics = Way Worse Sunburn Than Usual.

I've been back to work for two weeks at this point and things are progressing well, especially with the steroids. I can function normally for a whole day, but am quite exhausted at the end of the day. Getting up early as a result of not sleeping gets me an early start, which I prefer, as working past dinner seriously disrupts my eating patterns and nightly timings of bathroom breaks, which I like to keep to a minimum.

I know steroids are not the long-term answer, nor do the docs, but at this point let me live a semi-normal life: Well, maybe the two-a-day suspension steroids aren't "normal", but sometimes you have to change your perspective a little bit. I never noticed how much I didn't like the caulk job in my bathroom until recently! :^)

And the Wheels on the Bus...

2010-04-22T23:11:00.000-04:00

Even after going back on the steroids, the urgency didn't seem to resolve. Over the past week, the urgency and pain have continued to increase. The pain is starting to feel very similar to that of late last year, which ended up being the abscess. Thankfully it's not in the tailbone, which was debilitating, but more in the canal area, which feels more like being stabbed with a hot ice pick.

I currently have a call into the doctors to determine what's the next course of action. Upping the steroids will likely make me feel better, but won't necessarily fix the problem, as we played that game from November through February. My next appointment is still over 2 weeks out, but I'd be happy to go get another scope/xray/cat scan - anything to get ahead of the game rather than waiting. The percocet is helping take the pain away and also solidify some of the output, but I realize, much like the steroids, they only help you "feel" better, not fix the problem. It's been 6 months - I'm ready to be fixed.

We're to be testing the golf ability this weekend, so we'll see how that goes: That and travel may make for a long weekend. At least I get to see my new (and first) niece!

One Little Victory

2010-04-09T20:34:00.000-04:00

I had my followup appointment today to assess how things have been since coming off the steroids. Other than a little acne (feeling 18 again), things had been pretty good over the past few weeks. Unfortunately, the last two days have been outta sorts with joint pain and much more urgency with the movements. The abscess seems to have healed, but the pouch seems to be a little angry and inflammed. The doctors think coming off the steroids was a little too fast for me and being on them for so long. (Go figure - I didn't respond as most people do.) As a result, I am going back on them for the next 5 weeks: This will result in a longer taper and hopefully more time for my body to adjust.

With the abscess healing, the doctors are okay with me going back to work after getting re-acclimated to the steroids. This is a victory as I can get off disability and back to work. Ideally, I'd love to be healed completely before going back, but the steroids and antibiotics at this point are mostly maintenance (we think) and should be off of them soon. Also, if I have to go back for further surgeries, I'd like for my management to remember who I am before I'd have to go back out again. (There are none expected at this time, but I've learned to always plan for the worst and hope for the best.)

My next followup isn't for another 4 weeks, at which point we can access how the steroids are doing. If they aren't working in the next week, then it may be something other than pouchitis. I'm hoping this clears up and stays away after the steroid taper: Chronic pouchitis is something that I really want to avoid as being on medication for the rest of my life to regulate that inflammation is something that would make me investigate other options.

One Year Anniversary and Progress

2010-03-27T08:02:00.000-04:00

My, how time has gone by: One year ago, I was waking up with an NG tube stuffed down my nose, a brand new temporary ileostomy, a belly full of lapo sites, and terrible pain in the abdomen and the rectum. I didn't expect the recovery from the first surgery to be as rough as it was - This would be true for the second as well. Those first days were critical in a mindset change that this journey is not going to be easy and positive thinking will be my greatest asset.

I'm not going to try to list highlights of the last year: Every day had something new to offer, some good and some bad. At the end of it all, pocket fulls of lessons and learning. Other than acknowledging the time past, dwelling on a single day (much like a birthday) seems to steal the importance of the other 364.

I had a followup appointment last week to see the progress since the last procedure of cleaning the abscess. The pain has subsided greatly and tailbone pain is non-existent. There is still pain from time to time in the rectum (possibly the sinus?) but only a little and not often. The steroids are down to every other day and likely to be off with 7 days. Doctors noted the inflammation has also subsided and things look to be progressing as expected.

I have another (and hopefully one of the last) followups on the 9th of April: Should everything be healing as we expected, at that time we determine a back to work (and a back to golf) date.

Moving Right Along

2010-03-11T12:01:00.000-05:00

It's been over a week since the procedure to address the abscess and there has been a slight improvement. We cut the steroids in half, which has lead to daily pain in the tailbone and rectum. This usually starts in the late morning or afternoon and continues until I crumble and take a percocet. Thankfully, it hasn't been as bad as it was the previous two times that we cut the steroids. The hope is that this means the abscess is healing, albeit slowly. I'll be thankful to be off those god-foresaken drugs, even if they have helped me.

My appetite hasn't diminished (still eat like a linebacker.) I'm sleeping a little better, but that fluctuates on a daily basis and usually results in morning or afternoon naps to catchup on lost sleep. I've started walking again, now that there isn't 30 inches of snow on the ground and 30 degree weather. Exercise does increase the movements of the pouch, which is true for all persons, just that it's a little more drastic with me.

I have a followup on the 19th to check the progress: At this rate, I don't see the abscess or the sinus healing by then. My assumption is we'll do another gastrogafin (yeah) to verify the progress. As long as we are headed in the right direction, I'll take it!

Tubeless

2010-03-02T09:24:00.000-05:00

I had my procedure yesterday to clean out the abscess. The doctor noted the presacral abscess was smaller than we originally saw last week, which means it looks to be on the mend. The sinus into the actual abscess was smaller than a straw and actually too small for him to put a drain: That's even better news, as I don't have to deal with rectal tubes! The inflammation in the pouch has also receded, so it seems the pouchitis (or what we thought was pouchitis) is getting under control. As a result, we are also tapering the steroids. Good news all around!

Since the gastrogafin last week, the pouch and the abscess have felt much better. Other than taking narcotics yesterday after the scope, I've been able to go through most days without pain. Maybe the barium pressure washer actually blew out the abscess and lord knows what mess had been hiding in there. (Sorry, no pictures. I'm disappointed, you can count on that.) It's obviously clean now!

We will be monitoring the abscess over the next few weeks to see if it continues to heal and close on its own. If that does not happen, we'll have to deal with surgery and restitching, but those are bridges we'll cross if/when we get to them.

What's For Dinner?

2010-02-26T13:02:00.000-05:00

We met with the surgeon today to determine the course of action and how to address the abscess. Thankfully, the procedure is not as major as originally thought, and the procedure on Monday is more of an examination than a surgery. They are going to drain the abscess and better determine it's size and inflamed area. There is a very good possibility they will leave the drain behind; although, that's hopefully a minor inconvenience. [I've never left a hospital with a tube in my rectum, so let's hope for "minor".] He also feels the overall "pouchitis" that I've been experiencing and seen via scope is a result of the abscess and it's inflammation. If this is the case, then curing the abscess will also resolve the pouchitis. This would be a major bonus, as then I could get off the antibiotics at some point as well.

The downside to this is this may not be the end of the road: Depending on how the abscess responds and heals, this may be the first of other possible procedures. We will address those when the time comes, so no reason to stress about those now: Positive thoughts breed positive results.

Pedal to the Metal

2010-02-24T20:45:00.000-05:00

Today I had the gastrografin x-ray to check for the size and location of the abscess. I had this procedure once before just prior to the reversal (stoma takedown): It was only slightly uncomfortable then, as the stoma was the entrance point for the barium and I could regulate how much dye was contained in the pouch. Now, being post takedown, there is only one entrance and exit point. Unfortunately, that removes my ability to regulate any pressure. Unlike most GI barium x-rays where you get to drink the liquid, they actually inject the barium directly into you via a pump... controlled with a foot pedal. [I wonder if it comes with a steering wheel.] The really interesting part is you can actually watch on the monitor the barium being forced back through your system as they are snapping pictures. The really disappointing part is it feels like you're being expanded like one of the monsters in Dig Dug, and with no way to regulate, you just roll with the punches. This was by far the most uncomfortable procedure I ever had, but the pictures were really neat!

The good news is we could see the abscess on the xrays: You could actually see it disperse the fluid back to the tailbone (into the abscess) rather than back through the GI tract. Filling the abscess was uncomfortable as well, as then I had to wait for that to drain, which took a few hours. Thank you percocet. The radiologist seemed happy with the results and noted the abscess was not overwhelmingly large (approx. 4cm) from what we could see and should be easily remediated.

I still need to see my surgeon to determine what they will be doing next Monday. At this point, everyone is saying it's going to be an outpatient procedure, so I'm interested to see what is planned. I won't mind coming home that day, but let's just say I haven't been the fastest to recover from any of the previous surgeries.

To all you radiologists out there... go easy on the gas.

The Answer, My Friend

2010-02-17T06:45:00.000-05:00

After scope, scan, and guesswork, we finally located the cause of the pain. My recent CAT scan finally showed a presacral abscess that had formed between the pouch and the tailbone. We are unsure if this is the same collection that formed after the first surgery or formed as a result of utilizing the pouch after the second surgery. Either way, it's collecting stuff it shouldn't and ruining the party for everybody.

As a result, I will be going back into surgery on March 1 to have the abscess drained and removed. What exactly the surgery will entail is still up in the air and pending a further X-ray next week. This will allow the docs to determine the best starting course of action and whether they can manage the entire surgery rectally or laparoscopy. We will be discussing the expected surgery, possible deviations, and expected outcomes next week at a followup prior to the actual surgery. There is a myriad of possibilities in what they will need to do and possible change while in surgery, so I may not be sure until I actually wake up from surgery what was done. [That's fine with me, as this isn't really my specialty and I will be asleep for it.]

I had taken myself down to one steroid a day and was still feeling the pain throughout the day. We know the reason for this now. We we aren't sure is why the steroid makes the abscess feel better: It could be the cortisone is masking the pain, the actual suspension is help clearing the abscess, or the pouch just responds to the suspension in such a way that allows the abscess to drain. Either way, it's working, so we are going to continue taking up until the actual surgery in two weeks. This will help limit the narcotics I'm taking for pain as well. [Trust me, I'd rather be on narcotics than the steroids, but the doctors don't feel that's a prudent course of action. Why be in pain if you don't have to be.]

My tongue has swollen to consume about 2/3rds of my mouth, making eating and drinking uncomfortable. As a result, we are switching antibiotics again to Doxycycline hopefully rid this nasty side effect. Let's hope this antibiotic doesn't give me worse symptoms like the Xifaxan did last weekend. The thought is the abscess is causing a majority, if not all of the problems with the pouch, including the pain in the tailbone, the pain in the rectum, as well as the inflammation in the pouch (pouchitis). If this is true, the surgery should clear all three and I can work towards being antibiotic and steroid free afterward. I will probably always be on some type of bowel slower, but I'll take that over the nasty meds any day.

While this may seem like a setback, I'm quite grateful that we have an answer and can explain what has been happening for the last three months. It's also great to have a proper direction and an action that can help resolve as well. It would have been nice to find this issue months ago, but no previous scans or tests showed the abscess. In some cases, exploratory surgery is necessary and many people fight this issue for months and months before finally getting an answer. So, it may not be ideal, but it could have dragged on even longer. This, as they say, is water under the bridge, so wishing it had gone differently is just a waste of time and energy.

Here's to finishing the marathon as opposed to the sprint. I won't have much to offer over the next week or so, but you can bet that I'll be looking towards surgery.

New Isn't Always Better

2010-02-07T16:48:00.001-05:00

We started the new antibiotic, Xifaxan, on Thursday. Unfortunately, one of the possible side effects is diarrhea: Now isn't that ironic. Over the past few days, that's exactly what happened, and I'm doing worse than I was on the previous antibiotic. We're switching back to the Cipro, as that gave me no side effects, but didn't seem to be curing the pouchitis either.

The cat scan is scheduled for Wednesday to see if there is any fluid collection or some other issue that may be causing external issues to the pouch and the pain in the tailbone. It's likely it'll be blank like the previous, but I'll try anything at this point. If it is blank, then we'll have to see what our next steps are: I've got some ideas, but I'll refrain from posting them now so rumors don't get started :^)

Unfortunately, pouchitis is a possible effect from having the j-pouch. There is a percentage of the population that get it, but some never get rid of it. Some people are able to manage it with antibiotics, steroids, or other combinations of medications. We'll have to see if we can get rid of this bout before worrying about long term meds. I'm not a real fan of antibiotics (or really any "non-natural" medication.) As with the previous three months of posts, we shall see with time.

Running to Stand Still

2010-02-03T23:00:00.000-05:00

Time after the last appointment hasn't progressed as we had hoped. Even after doubling of the steroids, the pain still creeps in if I wait too long to take it in the morning. Also, the urgency has increased over the last few days. As a result, the docs got a few calls this week to speed up the process and make some changes to our current direction. The fact that the cortisone seems to be covering up the issue and not resolving the issue concerns us (well, at least me) that what we are doing is running to stand still, at best.

We're going to stay on the steroids to resolve some of the inflammation in the pouch/cuff, but try a new antibiotic, as the current antibiotic doesn't seem to be working as expected. We're also scheduling another CT scan, likely early next week, to try and rule out any collections or other issues that may be external to the pouch and not seen on the prior scope. I'm not asking to see anything, but an answer is an answer.

Let's hope there is some progress over the next week or something to direct us closer to the solution. Let's also hope this isn't the best that it's going to get. Thanks to all the good wishes, prayers and vibes!

The Male Health Scale

2010-01-31T06:36:00.000-05:00

Being a male and having a broken butt for almost two decades, I've determined a method for gauging how well I'm feeling: How often do I get to pee standing up? Even when I was sick in college, we would celebrate a standing urination as it would appear only once, maybe twice a semester. [I have a feeling being a little "out of our minds", we tended to celebrate odd things.] Since having step one surgery last year, it has become rare, but not unheard of. Over the course of the last few months, muscle control has definitely increased for me to sometimes separate the two; although, dealing with the pain and loose movements, it's been tough over the last few weeks.

The double dose of steroids has definitely helped this week. The pain no longer appears in the afternoon and there's only little discomfort around dinner time as things get active while I eat. The mornings have been better as well with being able to delay my first movement until almost lunch and enjoy standing morning relief. As expected, the cortisone seems to be working, but there's also the concern that it's just masking what is really wrong. As a friend of mine put it, "Football players can go out and play with a broken foot on cortisone shots." I'm not willing to prove his theory, but I tend to agree it's a valid comparison without the pads, contact, and ridiculous paychecks.

The edema is starting to set in slightly again, most notably in my face. No cankles yet, but the wedding ring came off yesterday just in case. As noted by the time of the post, sleep is also starting to work it's way out of my system as well, similar to last time. I've gotten used to having to take multiple enemas a day, but not sleeping is something even for this insomniac that is starting to take it's toll on my psyche. If I had to swap in not sleeping for being rid of pain, I'll take that as a step in the right direction.

Mood swings are in full effect as well, and with the full moon, it seems like the whole house is cycling with me. That makes for a very volatile combination and some very frazzled nerves. If there is anything that I've learned over the last few years, it is to not forget your caregivers feelings. They may not be going through the same aches and pains as you are, but they are still heavily emotionally invested into your well being. If you aren't doing well, neither are they. They tend not to complain about it, but they are still feeling it. Take the time to appreciate and acknowledge your caregivers: No matter how bad it is now, it would be a helluva lot worse without them.

And I'll Raise Ya

2010-01-26T15:19:00.000-05:00

I just got back from my followup appointment. The pouch is still inflamed (which we already knew). They doubled my steroids back to where it was just before the holidays with the hope to shock the shit out of it again, hopefully this time for good. Another three week course to see the reaction. If this doesn't work, we'll be in for at least another CT scan to look for collections (and not ones with keys and values.) Not much else to say other than hopefully this will get me off the pain and pain medication as well. Tomorrow starts the double dose and off we go.

Staying on the 'Roids

2010-01-21T14:32:00.000-05:00

The pain hasn't really subsided, and the witching hour is still arriving in early afternoon. [That's right about now.] As part of the taper, I went without the cortizone on Tuesday, to only wake up Wednesday still in pain. So the cortizone is definitely assisting with the pain or healing or covering something or... As a result, the doctors decided to stay on a daily dose once a day for another three weeks to see how this affects the pouchand pain.

Thankfully, the pain is handled with only 1/2 percocet: I respond really well to those, but it takes about 45 minutes to kick in. I struggle through what I can in hopes that it subsides. The docs want to stop the percocet intake and use Motrin instead to handle the pain.

Followup is still for the 26th next week, so we shall see how the steroids continue until then and possibly get an idea for what we can do to find out what is causing these issues. Unfortunately, this only further delays getting back to "normal", whatever in the hell that means nowadays.

Not Much Changing

2010-01-17T13:51:00.000-05:00

Just a quick update, but not much new news. I'm still having pain in the afternoon/early evening, typically as the pouch is filling up. The tailbone pain stays even after evacuating, so it's obviously not the pouch that is causing all the pain. The pouch does start to get irritated as the day progresses, but having to take oxy to get the tailbone to calm down slows the pouch down (that's a double win, btw.) Somehow a feel another scan is in my future, even if I have to suggest it: My gut tells me there's a buildup like after the first step that isn't going away.

The nightly steroids are hit and miss from a pain standpoint. I started to take earlier in the night, and just stay up to have my final "clear" of the day. This translates to somewhere around midnight/1 AM, but I get to sleep straight through until 6/7 AM, which is awesome. I haven't slept that long in months. Going to bed late, plus taking the oxy in the afternoon leads to a nap in the afternoon, which is all fine by me, as I've really needed it lately.

Next followup appointment isn't until the 26th, so patience is required until then, but the pain dissolves that fairly quickly.

Coming Off The 'Roids

2010-01-10T06:56:00.000-05:00

I've been on one dose of steroids per day since Tuesday and already noticing a difference: Unfortunately, not in a good way. The tailbone pain started back almost within the day and typically occurs whenever the pouch is reaching capacity. I guess that's a nice sign (who doesn't love the fuel gauge in their car), but the pain is debilitating to the point of having to lie down, even after evacuating. The pouch itself is also starting to have pains, similar to where we were back in December. Thankfully, the bleeding has pretty much stopped completely, and have noticed little to none on most days.

I've lost most of the water weight, shedding 13 pounds in 8 days after the new year: Yes, I was drinking a ton of water and yes, even moving more. My clothes fit more like they used to, but now my pants want to fall off (what can I say, no butt.) I 'think' my current weight is around 139, which is up from the pre-steroid weight by a pound or so. Any true weight gain is good at this point, especially if it's not just water.

Diaper rash: It's not just for kids anymore. I think I posted a while back that this is the reason babies cry: I'm formulating a pretty good theorem around this now and am positive that's the reason. This is the 2nd bout with a rash and still unsure where it's come from. Nightly incontenance has been limited to only once this week, so not sure that is the reason. I may be having an external reaction to some of the steroid that has a tendency to leak. Holy crap does it burn! I love me some A&D. I've moved away from the Zinc Oxide, as every time I try it, I seem to get the rash as well, so I'm concerned there may be a reaction to that as well: That would be a real drag, as everyone swears by Calmoseptime, which is a highly concentrated Zinc Oxide cream which supposedly works wonders for butt burn.

As expected, coming off the meds was going to have an impact, just not sure to what degree and what direction. We're holding steady to see where this little journey takes us over the next two weeks as we continue to ween off the steroids, but stay with the antibiotic. Cautiously optimistic is the best description for right now, especially as the steroids work their way out of my system. My doc isn't in a hurry, and neither am I, so slow and steady will hopefully win this race. Unfortunately, my work is becoming less patient.

Sub-Sti-Tute

2010-01-07T08:16:00.001-05:00

"My coke for gin"... Thanks Roger.

Being that I've up my sugar/carbohydrate intake, we thought it would be a good idea to mix in some sugar-free items to not overdue it. I'm not sure if you've ever tried the sugar free alternatives, but they are amazingly good. As I started with just one cookie, I couldn't stop... And didn't realize until I had consumed more than a few servings. It was at this point my wife mentioned that having too many could actually cause diarrhea.

Go figure, right there on the back of the package: "Excess consumption may have a laxative effect." Uh oh, that's no good. The "may" part of that sentence was true for about 15 minutes, at which point it quickly turned into "will". The only upside was that by the time I could finally get to sleep (I wasn't risking sleeping before empty) was that once I laid down, I didn't have to get up in the middle of the night.

The edema is continuing to wear off (last night helped I'm sure) and I've been dropping weight like a sweatsuit. Since New Year's, I've shed from ~150 to ~137. If you thought I looked swollen before, I look much better. If you thought I looked good before, I look much skinnier. I'm not sure where this freefall is going to stop, but I know I'm less than I was when I went in and is gonna take a few more months to get back to pre-step 2 weight.

I've been experiencing tailbone pain since early in the week, mostly buried in the coccyx. It feels like getting drop kicked by Paul Bunyan. A heating pad seems to calm it down, but walking/sitting/lying seem to aggravate it. We're keeping an eye on it and make sure there is no abscess building up behind it. Bleeding has been limited to maybe once per day since Monday night, which is good: Having blood exist outside your body or leaking from any orifice is discomforting and most likely unhealthy.

Love only having the steroid once a day: Seems I've traded one pain for another!

Followup #4 Post Takedown

2010-01-05T20:40:00.000-05:00

Had the first followup today post scope with the surgeons to check on the progress and determine where we go next. They were happy with the result of the pouch, but still keeping a cautious eye as I'm still on the drugs. They have started to ween off the steroids (thank you very much) but will continue with the Cipro for a few more weeks. My next followup won't be until the 26th and they are not releasing me for work detail yet. They are still concerned about my strength and the various bleeding that is accompanying some of the movements. They know it's healing, but it's not healed: I don't think they want to break a good thing. Progress.

The drive back from the hospital was a little uncomfortable and I've been having tailbone pain all evening. It's enough to warrant a percy to try and make it tolerable. I haven't been in a car that long since my last followup and I remember not being real thrilled about that trip either (although, I was drugged up from my scope so I don't think I minded as much.)

The past week has progressively getting better: The movements have been less - around 6-8 a day. I only get up twice a night, typically around 1-2 AM and 4-6 AM. I find that once I'm up the second time, I'm up for good, which makes for really long days. Napping comes and goes, depending on what the steroids allow me to do. I've been having blood only in the evenings and typically just with one or two movements. That is significantly better than a few weeks ago, so that makes me very happy.

I've been adding more foods to my diet, most notably carbohydrates (oh yeah.) Each day the body seems to tolerate more and allows me to indulge in some foods that I miss, most notably chocolate. I'm still avoiding all other dairy, which hasn't been bad by mixing in rice and soy based products, which I think are just as good and even better for you. I'm still avoiding coffee, safe a few sips, but found some great no caffeine tea that I sip instead of water throughout the day: Man cannot live on water alone!

My swelling is also subsiding: I've been losing about a pound a day in just water weight. My kidneys are happy and so are my ankles. I've lost most of my jowls, but my tummy and knees are a little swollen. It's tough to track progess now based on weight, as I'm see-sawing on the drugs. I've pretty much given up on the scale for now and will wait to come off the cortisone for good. My mobility has been good, but twisting puts some stress on the ab walls which don't typically bother me, but let me know if I've gone to far. I'm still not driving much, although now that I've been experiencing my wife's driving more frequently, I may start (sorry honey!)

As I've been saying, the location could be better, but the direction is good. It's a slow process, and everyone knows I'm not the most patient man, but there isn't much choice, so I concede. Thanks to all that have been sending vibes, prayers, and thoughts: They mean a lot to me and the family and make the journey easier.

Happy New Year

2010-01-01T07:02:00.000-05:00

If you're going to go out with a bang, you might as well do it with a bang. Yesterday was a food filled festival, capped by copious amounts of junk food and even a glass of champagne to ring in the new year. This is the first year in a decade I did forego the drinking agenda and decided to eat instead. I guess if I'm going to have a vice, eating isn't such a bad one, although I'm wondering if the pouch is going to agree with that agenda. Certain foods that bothered me before are slowly getting better, although dairy is still non-existent.

Thankfully, (so far) the pouch is tolerating the sugar, steak, starch feast. The steroids are limiting my sleeping to only a few hours a day, but at least it's a few consecutive, which was more than before. Daily trips to the bathroom are limited to between 6 and 9 a day, which is less than before and control has gone up. Unfortunately, there is still some bleeding, but not sure from where: Hopefully we can get an answer on that on Tuesday.

Nighttime incontenance is down to only a few nights a week, rather than daily, but I recently found why infants cry for no reason... Diaper rash. A little goes a long way and doesn't go away over night. A&D is the new healing potion, but unfortunately they can smell you coming.

Here's to 2010 being better than 2009. I say that, almost tongue in cheek, because depending on how you spin it, I might not get exactly what I'm looking for!

Back Home From the Holidays

2009-12-28T23:00:00.000-05:00

We returned home yesterday from the holidays. It was wonderful to be back home and even better to actually feel well enough to enjoy it. As the week progressed and the weekend came, the pouch was working better and the bleeding was lessening by the day. I was able to enjoy those FANTASTIC sugar thrills and not pay the terrible price I was a few weeks ago. Ironically, it was Christmas day that I tried using the hydrocortisone while being mobile rather than prone: This made a major difference in the feeling of the cuff of the pouch and the bleeding. This could be just a function of two weeks of meds or direct application or a gift from Santa: I'm not going to pick, but I will say I'm thankful for it. We're still a ways away from 100%, but were heading in the right direction and that's a good direction to be in.

While still on the steroids, I'm starting to swell like a tick. I've picked up my wife's pregnancy cankles and my jowls extend well past my skinny forehead. I've been trying to gain weight for nine months, and now have accomplished that at a pretty good pace. I can't say I didn't get what I asked for, I guess I was thinking of it in a different way! I'm not nearly as cold as I was a few weeks ago: I haven't had this much padding in about 7 years.

There is still one week until the followup, so patience is prevailing. I know that I won't get much for answers next week: The truth will be told once the medication has rid my system and we try to survive on our own. Until then, step by step and slow but sure. To a happy and a healthy new year... !

Sugar Revisited

2009-12-26T07:09:00.000-05:00

How is it possible to make it through your grandmothers' houses on Christmas without eating sugar? For this sweet tooth, it isn't. I was able to hold out until about 2 PM, which was only a few hours after getting there, before breaking down. Brownies, chocolate chip cookies, M&M cookies (personal fave), peanut butter buttons, smores bars (my wife doesn't help either), and the list continues.

I dabbled a little into the brownies, then moved houses and dabbled into the M&Ms, then back and some more chocolate chip cookies. I truly expected to be up all night with the runs, but the evening passed without event. Even with a total carbohydrate breakfast yesterday, which did make lunchtime a little "active", there was only maybe one extra movement all day. Either Santa brought me some cheer, the drugs are actually working, my pouch is adjusting to my foods, or some wacky combination of the above. I'm not sure I'll ever know the answer, but future trials will give a better statistical result!

If I'm able to get back on the sugar/carbohydrate train, you'll see me smiling like you haven't in months! For know, we'll control our excitement, not overdue and abuse a good thing, and see what baby steps gets us.

I hope everyone out there got what they wanted during this holiday season. I know I did, and it wasn't the sugar rush.

The Point of a Journey

2009-12-24T15:13:00.001-05:00

Journey versus Destination:

This has been on my mind for a while, so I took some time to formulate. Many times, we get so focused on the where we are going, we forget that we are going and look around. "Smell the flowers" goes the popular adage, which is very true. There is more to learn from the journey itself than the actual arrival, probably because when you actually get there, it's not as you expected. Do not focus on the being, but on the going: It's likely you'll be more happier in the going in the end.

I've noticed this in my thinking regarding this current surgery and how the recovery seems to be a guessing game. Surgeons and doctors run on experience, gut feeling, deduction, and percentages. If only people were like computers, then ideally they would be right nearly 100% of the time, but we aren't. I've seen from so many others having this surgery that everyone reacts differently to meds, to procedures, that it's hard to know how the person is going to react. Ideally, we shoot for the most likely to succeed, but the patient may not respond.

This is where the patience of the journey must come to play. As the patient that has been slow to respond to initial diagnosis, we've had to change course, which takes time, endures more pain and discomfort, and keeps me from my destination (a working, care-free pouch) for longer. Understanding this journey, this "randomness" of how the body reacts, has been what keeps me grounded that it may take longer or may not work at all. The uplifting side is the trying. The going. If I had a working colon today, what would I have learned in the last nine months?

Holiday Travel

2009-12-24T15:13:00.000-05:00

Traveling took a lot more out of me than I had thought, especially since I just got to sit there while the Mrs. drove. It is great to be home and see the family, so the pain and discomfort is barely in the forefront. The hardest part is keeping on a schedule of meds and food. Food: Oh, food. There's sugar temptation everywhere! One day down, 3 to go, and unlikely I'm gonna make it!

I'm starting to swell from the steroids: Everyone says I look good, so that must mean I must have looked horribly skinny before or they're lying: I'm going to go with the former. I guess it's true in the eye of the beholder! My sleep has been disrupted as well from the meds, but I do get a few hours of unadulterated sleep, which is enough to keep me going. I do feel tired, but for some reason, my mind continues racing. [This, btw, is how I typically operate, so I shouldn't be surprised here, just that it's worse than usual.]

I was able to go 9 hours between movements last night, which is a record since the surgery. There is still some cramping and pains, but they come and go: It's hard to figure out when it's just acting up or actually full. I'm still working out that detection. The bleeding has subsided to only as a result of movement and not actually in the toilet, which is a definite plus. It's still a little tender, but not nearly as frequent as before. There's still those "UC" times when there's urgency, but with a little concentration, I can "shift things around" and delay for a little bit.

Eggs: You seem to no longer want to hang around. For this, you will be replaced by Egg Beaters. It's been a wonderful run of many decades, but sadly, off you go. Tarnish some other person's cholesterol. Maybe if you learn to behave we can be friends again.

Pork: We're still good, just don't act like eggs and we'll get along fine. [I'll fight to keep you, so don't take advantage of me.]

Call Back

2009-12-22T21:44:00.000-05:00

I've made it through the weekend with little sleep and a decent amount of bleeding. Yesterday and today have been limited in bleeding, mostly limited to post movement, which leads us to believe it's just massive hemorrhoids. [Whose idea was it to surround that whole area with big veins and thin skin?] Daily naps should be in order, but somehow being exhausted doesn't let me sleep. Hats off to those out there, especially you SAHMs, that juggle the surgeries and the kids!

The doctors have noted that the increased bleeding was likely a result of the antibiotics and steroids, which tend to make things worse before making it better. If this holds true, then we are pointing in the right direction and the bleeding should continue to subside. Thankfully, just a day before heading out to see the family for the holidays. As Dad always said, better late than never. They are continuing the treatment for another week to get me through my next appointment on January 5th.

I'm swapping out the A&D ointment for some zinc oxide, also by A&D, but not the stuff we always used for diaper rash. The zinc oxide is the same used in the Calmol4, which seem to help stifle some of the post-movement bleeding. I'm looking forward to carrying a man-purse over the next couple of weeks to hold the assortment of creams/wipes/supps/lotions: I may just put the diaper bag back into service and carry my laptop with me as well!

Be safe and enjoy the holidays. Spread some cheer!

A Healing Plateau

2009-12-20T13:16:00.001-05:00

If there is such a thing as a plateau in training, is there such a thing in healing? The past few days have shown little improvement since the first few days and things have sort of settled into a pattern. This morning, I realized that the antibiotics are causing me to bleed: Not profusely, but enough that we need to verify with the doctors. Originally I thought it was the steroids, but it seems the steroids help stop the bleeding.

I'm down to only one percocet a day, typically in the evening, when the combination of the bleeding, steroid burn, and general pain is more than I'm willing to deal with. My movements have at least become somewhat "scheduled", so I can plan around when I need to use the toilet. Thankfully, I only need to get up twice at night now to empty, and even those are complete. It's the fact that it wants to be empty keeps me awake, so I oblige so I can go back to sleep.

I'm not sure if it's the meds, or the bleeding, but I do feel general fatigue and malaise in the evening. The mornings are good, so I try to maximize my "doings" then before I start to sputter out. I've only had one or two "steroid rages", which has been good: Thankfully, they aren't oral steroids, for I'm told (sorry Ma) that I'm a raving lunatic on them!

One good step is my weight is on the rise. Not sure if it's water weight from the steroids, or actual fat/muscle, but it's on the rise. Let's hope I don't have one long pee after coming off them and losing it all! :^)

We missed our family dinner this weekend, due to both my current feeling and the weather smothering the northeast. We're hoping the week gets better to make it back home for the Christmas holiday. Best wishes to everyone out there this season and may your holiday wishes be made! (Especially for you that have recently had surgery!)

A Step in the Right Direction

2009-12-16T14:51:00.000-05:00

Two full days of antibiotics and a few doses of hydrocortisone enemas seem to have started to right the ship. I'm cautious that we are only a few days in, but already things show improvement. My movements have been almost cut in half in frequency, which is a good sign and the output is much thicker with much less pain. Water absorption has also increased, almost doubling my urinary output, which is great for my kidneys and the thought of having another kidney stone. Unfortunately, due to the scope, I'm a little dilated and having small accidents. Thankfully, my son has similar issues, and comforted me with a "It's okay Daddy" and a pat on the back, a little comforting, but a little patronizing all at the same time. Guess he got my sense of humor.

After taking the steroid enemas, some output has contained some blood, typically in the first movement after taking. My hope is that's the inflammation in the pouch relieving itself. Ironically, this reminds me of my UC days, with a little less pain but at least under control. Having to do two enemas a day now, it has become humorously referred to as my "visionary" position. Rev Run uses his bathroom: Why can't I?

Last evening was the best night sleep since surgery, with only two movements and the ability to just hold and roll over and go back to sleep. Since having the incision stitch removed on Monday, I've been able to return to stomach sleeping, which definitely helps as well. This was something I did miss while having the ostomy, but something that could be lived without (if I had to.) I did entertain some more sugar last evening to see the result and so far shows improvement too.

Coming into the holidays, I'm hoping this trend continues, as travel is much easier when things are under control. If I only get one thing for Christmas, just get me home and back.

Fleet and the Scope

2009-12-14T16:45:00.000-05:00

I had heard that Fleet burns when used inside a pouch: I was able to confirm that last evening, as I blasted 3.5 oz of battery acid (okay, just saline laxative) into my pouch. It sort of sucked going in, but it felt like it was power washing my canal on the way out. Thankfully, a mouthful of towel was able to suppress the screaming curse words that were being projected at rapid fire in the bathroom. I need to mention that to the nurse that said "We've never heard it burns, but I'm sure you'll let us know." Yes, I will let you know.

I think the most important realizations I've had during this journey have occurred at odd times. For instance, you can get a whole new perspective on the world while on your knees on your bathroom floor with your head on a towel and a plastic bottle stuck in your rectum. (I'm not saying to use this to replace your downward facing dog yoga position, just that I happened to be there.] Last night, my thoughts went again to a woman I had met just before my surgery who had recently suffered a horrible rock climbing accident. She was miles from home and miles from family and all alone at a local hospital. We spoke a few times, just to help pass the time and offer what we could.

She had broken her leg, her pelvis, her other arm (thus ruling out crutches) and a few other bits and pieces along the way. She had undergone many surgeries (more to come) and was in between jobs and without medical insurance. She was always upbeat and cheery: She always had a laugh and a smile to share and was able to find the bright spot in any conversation. Every time I hung up the phone, I would think to myself, now there is a hero: There is someone who truly meets it head on and takes control of a situation. Of course, there are ups and downs, but a steadfast rock and someone who truly has a more difficult situation than I. If she doesn't complain, what right do I have? She called me last week, to see how "I" was healing. Even in her state, she still took the time to check up on me.

Thinking about this allowed me to formulate other "what did I learn" points:
- If you think you would rather trade your problems with someone else, you need to reevaluate what problems you really have: You have no idea how someone else has it or with what they have to deal.
- Don't let your "bad" days outnumber your "good" days. If they do, you're focusing on the wrong material. If you only have wrong material, you need to get different material.
- Dedicate energy to the positive. The negatives are just energy sinks: They serve no purpose other than wasting what energy you and those around you have.
- Spread the positive. That person you want to give a piece of your mind may have just had the worst day of their life: Offer something positive to pay it forward, or don't offer anything at all.
- You are not the most important person in the room: Just another that is there. [To that end, is there really any "most important" person in the room. If so, who is defining what criteria and who is voting?]

The scope was scheduled for 7:30 this morning, so we were up at 4 AM this morning to get to the hospital in time. I'm not sure what anesthetic they used, but I typically get to fight the way out (and of course, enjoy the ride), but it was like someone hit a light switch (drag.) I didn't awake for another 1.5 hours, so have no idea how long the scope was and faded in and out of consciousness for the next hour. Hospitals these days are not allowing children under 17 in many locations due to H1N1, so the family was removed for the entire morning. I spent my time trying to keep the nurses and doctors entertained.

The doctor noted that he could do a more thorough scope while under anesthesia (me that is) and was able to check out the pouch in detail. He said I had a "roaring case of pouchitis". [Yes, like a lion.] Pouchitis is just inflammation of the internal pouch which can occur for many reasons, but notably it's the pouch not happy about the job that it now has to do. He was unsure how it got out of hand so quickly and this quickly after surgery, but we're taking one step at a time and get this resolved to see if it's going to be a recurring theme. He changed up some meds and gave me some steroids (of course, not the pill kind, but the bathroom floor kind.) Hopefully, in the next two weeks, we will be able to kick this. (Which would be great, as the holidays are right around the corner.)

He also mentioned a "bubble" portion of the pouch that exists near the exit. He's not sure if that's causing any issues, but something we'll keep an eye on. [He mentioned a specific word but with cloudy head, I no longer remember it.]

Off we go, so let's see how the next week pans out.

Rice Krispie Treats: Not Only For Kids

2009-12-10T21:39:00.000-05:00

Yes, Rice Krispie treats are a God send. Ironically, sugar opens me up, but marshmallows tighten things. Go figure. So, let's take advantage! We've ripped through two full pans of treats in the past eight days and I'm looking to start another one either tomorrow or Saturday. Yes, they say there can be too much of a good thing, but I've not yet seen it, especially with this. "Eat up Johnny!"

They cut my antibiotics through the scope next week, so it seems we'll be on a new course of meds after the scope. To what, well, that's part of the journey. Pain in the tailbone still picks up as the day goes on. Today, I did more walking (had to buy some xmas presents) and I thought that would help... Thought wrong. It knocked me out and chased me into a nap, even after sleeping in to catchup on lost sleep last night. For some reason, I try to avoid taking the pain pills, like I'm going to get some medal or award for trying to tough it out. Yeah, the "My wife keeps yelling at me for not taking them and living in pain award": I've got a lock on that after this year.

Thanks to all my old friends and family that have shown support of this blog, as well as the new found friends and fellow pouchers that are making this journey. You are definitely not alone and a big thank you to those of you that helped me through my journey as well.

Followup #3 Post Takedown

2009-12-08T20:38:00.002-05:00

I had an early dinner last night, which led to an earlier empty pouch, which lead to a great nights sleep. I only got up once last night to use the toilet, but unfortunately, the front that moved through last night reeked havoc on my joints: I think I awoke 5 times last night with just the pain in my shoulders. (Yes, more stuff that's broken or at least doesn't work like it used to.)

I had my third followup appointment post-takedown today. Unfortunately, the CT scan did not show any definite, but was "indeterminate". It seems there is 'something' going on down around the pouch area, thus the pain and urgency, but they are unaware as to what it is. As a result, I will be having a flex-sig scope next Monday and, thankfully, be asleep for it. Typically, they do this awake, but as I could barely handle the digital exam, my surgeon knew I couldn't handle a full scope. So, I get to be drugged up. Cool.

This is an unfortunate setback (or just tacking onto the current setback), but at least it's a step in a direction. The surgeon acts like he knows something, but wants to see the scope to verify. I guess that could go either way (knowing something not so bad, or knowing something bad), but at least we'll be further analyzing and hopefully narrowing the possibilities. I'll wait until the results come back before I get nervous. No reason to freak about something you A) don't know and B) can't control.

Until then, I'll be continuing the pain pills and standard course of what we've been doing over the past few weeks. This is getting close to Christmas travel, which will definitely raise my blood pressure should my XMas be affected, but again, let us wait until we know. I can pop pills to make the drive. I'm slowly adding new foods and a little more carbs than before to hopefully add a little more weight (which has suddenly begun to plummet.)

I will also be increasing my activity to help out any movement of fluids. I haven't been walking as much as my first surgery (much colder this time of year), but have been going more places in the morning, but by the "witching hour" (2 PM), the body is starting to revolt and requires attention.

Barium - You Can't Stay Here

2009-12-07T17:58:00.001-05:00

Yesterday smeared into today with lack of sleep. These two days aren't what the doctor ordered. I had the CT scan this afternoon. Unfortunately, it was an hour from home and barium is not digestible. As a result, it was one of the most painful rides I've had since my step 1 surgery. I could hold it, which means good for the muscles, but the body is still pissy and painful about keeping stuff around too long.

I've got the followup tomorrow, so hopefully we'll have some answers or at least a direction to head in. I can honestly say physically and emotionally, this is starting to wear very thin. I keep telling myself this is all part of the process, but it's getting difficult to see the forest from the trees. Even if this doesn't work out, I won't regret the decision, but at least know that I couldn't handle it if I go with a permanent ostomy.

Sick And Tired

2009-12-06T19:05:00.000-05:00

Well, I called the sick part. Last evening was pretty good, one of the best I had. Only a few trips in the evening, but during the night/early morning, I was in overdrive again. The oxy helped with the pain and slows it down a bit, but it surely isn't magic!

I enjoyed a nice breakfast today with some friends and the family. Got to see other friends from work and play with some R/C stuff [I'm trying to get the little man hooked so Daddy can go buy some.] All was great... Right up until the 'witching' hour. I made it to lunch, but was exhausted and was getting more painful. I managed to get home (about a 20 minute drive), but then it all went out of control. I've been having massive chills and a fever running into the low 100's. My body is spent and my anal canal feels like it was power washed with battery acid.

It's amazing how quickly things go from good to bad. I hope this scan tomorrow shows something, as I'm starting to lose my handle in the evenings. Still haven't cried yet, but I sure do bitch and whimper a lot. [My wife says this is normal behavior, so just assume it's more than usual.]

Tired (hopefully not sick)

2009-12-05T15:13:00.000-05:00

I've made it through the last two days with minimal pain killers, typically only at night. Tried a diabetic supplement (made by Boost). I think the name is appropriate, because that's what it does to your stool: Much like the space shuttle, I could chug one of these and fly around the room. I guess the sugar alcohols are just as bad as sugar for the pouch. Still searching for an appropriate protein substitute so I don't have to eat 1.5 lbs of chicken a day!

Spent an unusual amount of time on the couch yesterday, followed by an early bedtime at 9:30 PM. So much for "boosting" my way through the day. I was running to the john every hour, so maybe that was my workout routine for the day. I did have a decent nights sleep as things calmed down later in the evening/morning. I was in good enough spirits this morning to head out to our favorite breakfast joint. A morning without eggs and pork feels like a morning without sunshine.

Weight this morning was 135 lbs, which is the heaviest since surgery, so hopefully that's fat and muscle and not some random, undrained fluid gathering in places it shouldn't be. I've been getting around in the house well, but the weather has sort of drowned outside walks. I managed to get outside the house this afternoon as well, but seem to be paying for it now: Unless the seats in my car are designed to have a centralized crown. [Think "It" for you South Park fans.] Now, we nap.

Scan It - The Third

2009-12-03T21:06:00.000-05:00

I got the call this morning that they want to do a CT scan next week to see what's up with the pouch. Not sure if they called because I pissed off their answering service or because I call weekly noting that it's not getting any better: It isn't, so at least I'm honest. Either way (or neither), I'm hoping that it answers some questions and puts us in the right direction (quickly.)

The past two days have been the roughest: By the evenings, I'm in pain holding it in and in pain in letting it come out. Thankfully, the oxy makes it tolerable and I can get a few hours of sleep. The rest of the night isn't so fun, but at least I'm not homicidal in the morning. By mid-afternoon I am, which is when I typically go and hide. I thought I had a lack of patience before, but sleep deprivation and pain have a miraculous way of making the rest disappear.

Due to the weight loss and my low calorie intake, I decided to give nighttime snacking another chance. It definitely doesn't help the output of the pouch or sleeping at night. What the hell, I'm not sleeping anyway, so I might as well ingest another 500-1000 calories and enjoy the time before bed.

Trying out some new fiber tablets rather than drinking the sand that I have been using. While the sand works, it's difficult to make portable and easy to tote around. Figuring I gotta carry pills every where I go know, what's another few. I've been making it outside, regardless of the cold. I don't last long, and typically have to hit the john just to relieve the pain, but at least I can participate in some social activity.

Roller Coaster

2009-12-02T14:44:00.000-05:00

The roller coaster rolls on, trying to figure out where the pain is coming from. Yesterday, they up'd the bentyl (dicyclomine) to help slow down the bowels to allow the pouch to heal. It actually reminds me of prednisone in that it gives me a nasty temper but I get sleepy when I take it. Last evening was uncomfortable and not sure if it was lunch or just additional gas trying to flip my rectum inside-out (yes, it is as uncomfortable as it sounds.)

They were supposed to have doubled the bentyl last week, but forget to give me a new prescription when I left. So when I called on a whim yesterday that it was odd that I ran out between appointments, they realized that screw up and changed yesterday. [That's another week down the drain... actually, down the toilet would be more appropriate.] We'll see what a full week on the double-dose does.

Next followup isn't until next Tuesday, so hopefully the next few days start trending in the right direction; otherwise, we're going to be in the same place we were last week and still won't have any answers. The weight loss free fall seems to have slowed down and I seem to be hovering around 133 lbs. I don't look like the walking dead after my first surgery, but you could still play the xylophone on my chest and ribcage.

The incision is starting to close, or at least scab over. Yes, it's a good size scab (and no, I have no plans on saving this one... back story will be posted later.) This may be a nasty looking scar, as there was so much room in between the folds, so we'll see what it looks like in a few weeks. Thankfully, battle scars don't really bother me, as I'm not typically shirtless (unless I finally nail that underwear modeling gig.)

Weekend Rant

2009-11-30T10:36:00.000-05:00

I took a few days off, trying to recoop on some sleep, but that's not really happening. Figured I'd try to save and post with a positive tone, but that's unlikely again today. The Bentyl keeps everything in for about 8 hours: That sounds great, until you figure dinner is due up at 1-3 AM every single night. Been eating rice (and some plain sushi) which stops it even longer. I think this med is going to get investigated with the docs to hopefully cut back so I can at least empty by midnight, or even 2 AM would be fine. Trying to keep away from the percocet, but one a day puts the pain down to tolerable or adds a little sleep in the late morning.

I've been at least making it outside the house this weekend, a breakfast, a dinner (yeah sushi), and some shopping on Sunday. We picked up a new train set for the holidays and did some minor surgery on some older ones that we had. The boy was more than thrilled and thought this was the best day ever. [Although he did say winning the lottery would have made it even better, I had a hard time arguing that fact.]

The output is less watery and the Konsyl definitely helps the bulking. The Bentyl helps with water retention as well, but (ironically) makes it difficult to urinate (how the hell do those two go together?) Maintaining through the day, or even when out has been successful and less painful, although our 3 hour jaunt yesterday did have to make an emergency stop (thanks doughnut shop). It reminded me to my UC days: Scanning the horizon for a toilet, but at least it was easier to hold (or even possible to hold), just a little uncomfortable.

Still have not managed any dairy yet, but have slowly been adding sugar (OMG the Mrs. pumpkin bread is ridiculous.) The doughnuts were a little over the top, so trying to manage some lower sugar items to see how they react. If I can find a sweet spot (no pun intended), I'll be able to add a few hundred more calories AND satiate my sweet tooth! :^) Clif bars on the next on the list: Let's hope for the best and hope chocolate still agrees with me.

I still have a week to go until next followup, but things trending in the right direction, just very slowly. Dropping weight, a pound every few days, so waiting for that freefall to stop. I'm close to my post-step 1 weight, which was terribly low and took many months to recover from. Granted, golfing every week as my "exercise" was a great recovery scheme before, but it's a little cold to be swinging clubs at this point. As the Mrs. suggested, it may be time to join that climbing gym once I get clearance from the docs. They had originally expected Dec 14th, but that may be a little delayed due to the first two weeks.

sugar, Sugar, SUGAR

2009-11-27T12:36:00.000-05:00

"I'm in to you!"

Thanksgiving is a day for splurging: So what the hell, let's splurge. I still tried to avoid dairy, but my wife found some vegan desserts that were ridiculous. Unfortunately, the combination of two donuts in the morning (yeah bowties), a vegan brownie, and some pumpkin bread, that was more sugar than I had probably consumed since leaving the hospital. As a result, I was in overdrive and the hope for anything that wasn't loose was a pipe dream.

The sleep has been better, but results in me getting up later: Who eats breakfast at 10 AM? Between that and not having my normal nightly staple of snacks, I'm still dropping weight: Slowly declining to 133 lbs. This is still heavier than my lightest at 127 after step 1 surgery, but 11 lbs lighter than my pre-step 2 weight of 144. Thankfully, I have more energy, but having only 3 meals a day feels like I'm on some freakish diet (do people really do this?)

Prior to the takedown, I was running on a diet that constituted about 3000-3500 calories a day. I'm not sure if I'm going to be able to keep up with that on three meals a day. I see many days (and nights) of trial and significant failure in the near future.

(Special thanks to Gem City Rockers for letting me plagiarize the "Sugar, Sugar, Sugar" lyric.)

Thanksgiving Morning

2009-11-26T12:06:00.002-05:00

Happy Thanksgiving folks! Turkey: check. Gram's famous macaroni salad: check. Donuts: check. Coffee: check. (Okay, the last two aren't really to be part of my diet, but I did show a little restraint.) This will be the first time we try out Thanksgiving at home, by ourselves, in about 6 years. The last event was hardly a success, but was still a blast nonetheless. Hopefully, we learned something; otherwise, it'll be off to the diner.

Last evening's sleep was even better, with only 5 stops between 10:30 and 9:30 this morning. I feel much better rested and the homicidal thoughts that arise after days of sleepless nights have subsided (amazing what pops in your head when you haven't slept for a week.) It was the first night without pain killers since before the surgery and thankful for that. As much as I like them, living a life on them isn't something that I aspire.

Off we go to eat our faces off, stuff our pouches (some bigger than others), and share some time with family and friends. Enjoy and let the next year be even more thankful.

Things I am thankful for:
- My loving wife, for whom I could never do any of this.
- My little man, for whom getting better is a driving factor.
- My mother and my brother, who stand strong, even after the last few years. It does take someone special to look an NG tube head-on time after time.
- My family, who always stands by, checks in, and helps out. I wish I had more things for you to do, I really do. Next time, I'll have more $ and a honey-do list for you next time.
- My friends, who truly care and still can crack and laugh at potty jokes (thank god).
- The opportunity to live a normal and healthy life, which isn't granted to everyone with medical issues. Grab it with both hands and don't let go: You may not get another opportunity.
- The big picture: Not every instance or second is perfect in life. Thankfully, it's made up of thousands of them: If you're reading this, you've got more good than bad, sometimes you have to step back to see the forest.
- A job that offers me the ability to take care of medical issues without any headaches. Not everyone has this ability and it doesn't go unnoticed.

Doxy's Moxy?

2009-11-25T21:00:00.002-05:00

Well, Tuesday night was the first night of decent sleep in probably 2 weeks. Now, I never got more than 90 minutes at a clip, but when you get a few of them back to back, you quickly appreciate what you've been missing and what you got a glimpse of.

I'm fairly certain this is the working of the wonderful Doxycycline, the antibiotic "that can fix anything", as my surgeon's partner noted. As with the setbacks after step 1 surgery, a little antibiotics went a long way. Hopefully, after a few weeks stint of the doxy, we can part ways and only meet up on random occasions, hopefully separated by many years (much like high school class reunions.)

It was the first morning that I "wanted" to shower and shave since the hospital, and that's a good sign. It's not that I'm against them, but I can't say they are the most important part of my day, especially when I'm feeling like shit. As the day progressed, the need for percocet was only there to assist with a trip out with the family to have dinner somewhere outside the house. Being high in public has a certain "entertainment value", especially when you know you can't go to jail for this one.

Making it through dinner was easy, but the post-dinner "gotta go" and ride home was quite painful. Low and behold, it wasn't gas pains this time, but the pouch literally trying to split at the seams. Thankfully, we were only a few minutes from home and some rather crude jokes allowed me to make it home without having to play Russian roulette. Things have started to stiffen up and, as other j-pouchers like to jest, the play-doh factory was in full effect. I'll spare you the pictures (yes, certain moments I feel words can't describe), but it was the best movement since having the 2nd surgery.

Let's hope that the doxy continues it's magic and see how the evening goes. This would definitely something to be thankful for.

Scheduled Followup

2009-11-24T18:00:00.025-05:00

Two weeks out and first scheduled followup. I tried to best explain what and where the pain/burning was, but, even with my 'advanced' knowledge of the lower GI system, it was still difficult to explain. After some basic poking and prodding, they still aren't sure what the issue is. They think it may be irritation of the rectal stump or canal area due to liquid output after surgery.

They've up'd my antibiotics to hopefully combat any infection and help with the healing of the irritation. I hope this isn't cuffitis (effectively UC of the few centimeters that are left of the colon), but that can typically be resolved with antibiotics and steroids. I head back in another two weeks for followup and see where we are: I can tell you I won't need two weeks to figure that out. I'll know by next week and sure to do my followup then.

The surgeon left the single stitch in the incision, as he wasn't comfortable with the closure: He was hoping for a little more, but was happy with the way it was looking at this point. I have no idea what the scar will be like, but that is far from anything I care about. We'll think of it as a tattoo, marking some freakish right of passage. Maybe if I work out my stomach muscles enough, I can make it look like my belly is smiling or frowning.

I'm still taking pain meds (especially since people from work have confirmed that it's a good idea) which does help with the pain, but doesn't slow any of the gas pains. I typically avoid them until the afternoon, evening hours, when things are quite active. Thankfully, learning to pass gas has been an easy go and definitely cuts out some of the pain. I don't necessarily go pell-mell at it (especially in public), but it's definitely a feeling you get used to.

I gave the mall a run yesterday with the fam after the appointment. Thankfully, there were painkillers involved, but as they wore off, it was definitely time to go home and take a 2 hour nap (yeah sleep). If I can't get it with the sun down, then I guess it'll be with the sun up.

(Wasted Youth) Sweet Tooth

2009-11-23T18:16:00.000-05:00

It seems that late night sweets and a little decaf coffee not only affects the evening hours, it seems to drag into the morning as well. Result: avoid late night sweets (now that's gonna be tough for the long term.) Actually, sugar is bad all day long at this point and makes it difficult to get anything to solidify.

Surgeon followup is tomorrow, so hopefully there will be some answers (or at least a direction) to the pain and urgency that has been nagging for the last week or so. My weight is down to 136 lbs or so: Total drop of 8 lbs since surgery. Still 9 pounds heavier than my lightest after step 1, but not heading in a positive direction. Dehydration isn't a large issue at this point, and seems to be getting better (or clearer, depending on how you see it.)

Pain meds are still a must in the evening to help take the edge off the pain to try and sleep. Still only getting 90 minutes at max, but they feel like a day compared to the other little naps throughout the day. Thankfully, my wife doesn't hear me everytime I get up, nor does she comment about it when she does. [Yes, she is the greatest person in the world.]

The incision, supposedly the only thing that should be healing at this point, is actually going very well, and barely open at this point. The skin hasn't connected yet, but the underlying tissue has been cooperating very well and the blood supply has been great. [Note to self: Things don't heal nearly this well if I'd still be smoking.]

Sleep: Where have you gone?

2009-11-22T08:29:00.000-05:00

More fitful nights of sleep (or lack of sleep). Last night, I was up 9 times between midnight and 7AM. Even when I stop eating at 6PM, still have no idea how long food lasts around: No other meal hangs out for 12 hours, but dinner does. Next we try eating some snackies after dinner and see if that helps migrate southward so I can get some sleep. They say to not use percocet as sleep medication, but it's the only thing that keeps the pain at bay long enough to actually take a nap. (That's all they really are, just naps.)

It's getting easier to control throughout the day, mainly by controlling the amount of gas buildup. Mind you, I'm not 100% yet, but fast on the gun to know the difference. Adding fiber to the diet has definitely helped keep things stiffer and keep me less dehydrated. This seems to be one of the biggest contributor to pain: Thankfully, one of the easiest things to (try to) control. Some things are trending in the right direction, so I'll take that.

I'm headed out this morning to get the curly locks all done up and will be hitting one of our favorite breakfast joints: Still no cheese, but as long as egg has pork, all is still right with the world.

Post Checkup #1

2009-11-20T22:49:00.000-05:00

The checkup on Wednesday seemed to help the 'ole pouch out. There's still a decent amount of pain in the afternoon and early evening, typically as I'm stuffing my piehole with the next meal (making way for more intake) or a few hours afterwards (making way for more intake.)

Early morning hours are a little touch and go with sleep, as it seems my pouch is a little nocturnal and wants to play from 10PM to 3AM. That'd be cool, if I lived in California or Hawaii... But I don't. Mornings and early afternoons resemble something that is somewhat livable and seems to be getting better by the day (if only a little at a time.)

This is going to be a long term process, but at times, between the pain and the meds, it's tough to see past the short term status. I've been fairly careful with the diet and taking note of things I eat and things that work (or don't more appropriately). Also, trying to not eat into the late evenings is difficult, as I think I would eat a fourth meal after 8 PM for the last, um, 10 years! I've been able to cut back, but even a few handfuls of pretzels seem to keep it running later in the night.

Looking forward to dairy, although fearful of the gas it may bring (boy, does that feel like a kick in the pants!) Somehow, I have a feeling I'll be eating alot more soy (which isn't bad, as I'm a huge fan of Silk for cereal!) I fondled a Clif bar today (yes, I said fondled) but was able to resist the erge... I can only imagine what that could bring on: Slow and steady... slow and steady...

Followup for Setback

2009-11-18T15:45:00.000-05:00

It hadn't gotten any better since Monday, and I was having to take more pain meds at home than I did at the hospital. Last evening, they started me on Doxy (antibiotics) to hopefully avoid any abscess or infection issues. This worked the last time I had issues in the pouch (post step 1) when there was fluid in the stomach cavity. Let's hope we can be 2 for 2.

The doctors saw me this afternoon to give a look-see at what was causing the issues. They found some adhesions that were near the initial anastamosis that they think may have been causing some discomfort... And if it was, I guarantee you, them clearing those adhesions was way more painful than having them. I truly thought I was going to black out from pain and I don't think I've ever whimpered to a doctor before. [Note to self... Make sure you take the pain killers BEFORE you go in, especially if you know they're going to be poking around an already sore area.]

Hoping the next few days get better, and doesn't have to be 100%, but I'll take trending in the right direction. Waiting for Mrs. to come home with the next round of Percs so I can drift off here for a little bit. Hoping to get some more water absorption as well to help out the old kidneys: I'd like to avoid another kidney stone if possible (if at ALL possible.)

Also found today, just because you have a doctor that is much older and looks crotchety, doesn't mean he is missing his sense of humor.

Minor Setback

2009-11-16T21:46:00.001-05:00

Well, recovery wouldn't be recovery without setbacks. The pain has continued and the bowels have been looser than earlier. Visiting nurse said blood pressure was low, probably due to slight dehydration, noted by the darker urine seen over the past 24 hours and the loose movements.

Doctors are not convinced it's pouchitis or cuffitis at this point, even after passing some blood earlier in the day. They have prescribed some Dicyclomine to be able to slow the muscle spasms and give the pouch some rest (and hopefully me too. I will say, this does remind me of my really bad UC days, where the day was focused around using the bathroom. Thankfully, I'm smarter this time around and trying to utilize a more bland diet and liquids to combat the issues of both.

The incision and abdomen are feeling great and closing nicely. I'm not doing crunches yet, but I'm definitely gaining more core strength (or shall I say, loosing core pain!)

As with rain, it can ruin a golf outing, but it does make the crops grow. Hopefully, this is part of the crop making process and not ruining my golf outing.

No Temperature, But Still Pain

2009-11-15T14:31:00.000-05:00

The doctors felt the spasms could be due to overwork and inflammation, so they put me on Motrin as part of my daily diet Friday night. The fever finally came down to normal late last night and seems to be holding steady. Finally, I was able to get over an hour of unadulterated sleep last night in between spasms and false alarms (or what can be deemed false alarms: they are more like disappointments.)

I was able to make my way around the block today, but not breaking any land speed records and well below my previous "healing" times. The pain does put a damper on sprinting, even if the legs and heart could handle it. Water absorption seems to be okay, but starting a regiment of watered down G2 to add a little more, just in case. [Even G2 straight up caused me to be loose when I had my temp ostomy.]

It seems that after dinner snacks of peanut butter sandwiches doesn't slow digestion like one would think. This may be another reason of lack of sleep from later in the week: Further scientific studies should show more. Late night pretzels (11 PM... what was I thinking) don't help the false alarms either. Maybe late night coffee will help clean out the leftovers and promote a good nights sleep. [Like I said: real scientific studies here.]

Temperature and Pain

2009-11-13T20:11:00.000-05:00

Well, they call it recovery and not recovered for a reason. Over the past day, I have been looking at a low grade fever (now up to mid 100's) and serious spasms in the pouch. Docs are hoping it's only getting accustomed to using the pouch and not a bout of pouchitis.

Feeling pretty fatigued and sore (imagine working out all day... yes, that muscle). It may be small, but it's more tiring than you can imagine. Hopefully some NSAIDs and some oxy will let me sleep tonight.

Medical insurance came back with good news tonight, so that's a good start to the weekend. Bland diet is kind of boring, but hopefully just to tide me through the rough start. I guess I got spoiled on my bacon, egg, and cheese every morning. (Yes, it does do a body good. Look at mine!)

Takedown pictures

2009-11-12T18:49:00.011-05:00

Pictures are worth a thousand words. These way outdo the battle scars from step 1. The total length is about 4 inches. There was some scar tissue left over from the ileostomy that had to be removed to ensure the closure would heal properly. There was some adhesion from the bowels behind as well, which caused for further removal. It is healing well and no longer bleeding profusely, but still is a joy to pack!

I removed the pictures from the blog and just linked to the Picasa album. Now there is no fear to read this! See the pictures here.

[Editted in response to comment question from "Membership Required":]
For takedown, the only action should be to remove the temporary ileostomy. This is done by cutting the stoma from the surrounding skin tissue, cutting the stoma section out of the small bowel, and then stitching the small bowel back together. Once the loop section has been removed, the bowel is tucked back into the abdomen.

As you see from the pictures, there is a single stitch in the skin. My wound was just under 4" wide and about 3/4" across. This was packed for a few weeks while it slowly healed from the inside out. It closed after about 3 weeks, but is still scabbing and healing. I'm not sure what the resulting scar will look like, but, realistically, it's not really a concern for me.

My stoma was only 3/4" in diameter, but the resulting wound was due to scar tissue from the initial surgery, as well as adhesions from the bowel just beneath the stoma. The extra was removed to get to healthy tissue to ensure the wound would heal nicely, which so far, it has.

One week after takedown

2009-11-12T18:37:00.000-05:00

I'm out! I was in the hospital until Tuesday and then released with smiles. Doctors were very happy with the surgery and end result. Other than dehydration issues upon arrival (which took a few days to clear up), it's been much better than expected.

I have control over the pouch with no accidents. I'm still getting used to having the feeling of how full the pouch is, but that comes with time. There is still spasms involved with the pouch as it gets accustomed to holding matter, rather than moving it through. This is to lessen over time: The spasms don't cause loss of control, the opposite, but they are quite painful.

I'm back to eating most foods, but still avoiding dairy and raw fruits/vegetables. The dairy part stinks (how can you eat bacon and egg with no cheese!) but I'm preferring go slow and easy on this: I got my whole life to get back to eating poorly. Sugar doesn't sit well yet (dang chocolate chip cookies), so hopefully that comes with time as well.

Thank you to everyone, especially my wonderful wife, for being there throughout this ordeal. Your thoughts and prayers are appreciated and make each day a little easier to pull through when you feel a little down in the dumps!

Day Before Takedown

2009-11-04T16:50:00.000-05:00

Tomorrow's the day for takedown. A little anxious and hopefully goes pretty smooth. Big props to fellow poucher, Arty, for answering some post-surgical questions, mainly about the accidents. If it goes as smooth as he says, this is gonna be a breeze. (I'll let him know if he was wrong.)

(Just got the call, surgery is scheduled for after 2 PM tomorrow... that means I get to eat tonight! YEAH BABY!)

Excited to be away from work for a few weeks and get to spend some time with the family. Been crazy so long at work, I forgot how many nights I made it home before dark (even before daylight savings.)

Did NOT come close to 100 on last round of the year... fact of the matter, was one of the worst rounds yet! Did enjoy the course (props to Hickory Valley in PA) and looking to go back next year. Still need to videotape the stoma... last chance tonight so I'll get that camera now.

Last but not least, go Phils and go Jackets! Chat again on the other side.

First Post - Catchup and Prep

2009-10-27T22:52:00.000-04:00

This has been a long time coming, but my general laziness has delayed (as usual.) I'm 7 months away from step 1 and only have 1 week until step 2: takedown. Big thanks to Paul (http://ulcerativecolitisandmyjpouch.blogspot.com/) and several others to get me to start this, if not for others to read, to at least air out some dirty laundry (no pun intended.)

Having the ostomy has not been as bad as many make it out to be. Other than some minor itching, the general "bulge" in your pants with gas, and the occasional murder scene in the bathroom during a change, it's been a upgrade from previous pain, cramps, and unknown "where am I gonna poop right now". Plus, how else could I have talked myself into rocking out suspenders over a belt!

Todos for the week:

Have a golf round better than 110 before surgery
Video tape the stoma (come on, when else do you get to watch your insides at work!)
Make sure I get final blood drawn
Make sure we got the paperwork for insurance

Step 1 - Surgery Prep

2009-03-26T23:00:00.000-04:00

Ugh. That's all I can say. I'm not sure if it's the excitement from the surgery, or having to do the GoLytely, but my body is in full rejection mode. Typically I've done the Phosphosoda, which can be a little brutal, but only requires two drinks during the day. I got about halfway through the GoLytlely prep before I started to have a short gagging spell. This very quickly escalated to my body giving back the last drink of that blasted juice, to giving back everything it could find in my upper GI.

I had to call the surgeon to see what to do next, as even trying to continue, my mind had sorted out that it was no longer going to allow anymore into this body. So much for mind of matter. Since I had got some down and was already starting to feel the effects of it, they decided to shift towards Magnesium Citrate. It's definitely easier on the stomach, on the mind, and the bowels, but still does the trick. I still battled getting down a bottle of that, but it was enough to keep everything moving and clear out the colon.

It's going to be an early morning tomorrow with being the first surgery of the day. Unlikely we'll see any sleep, but with the excitement from above and the lack of food, I'm pretty exhausted, so let's see how it goes.

Tips and Tricks for an easy bowel cleansing from two decades of scopes:

Good toilet paper: You make fine furniture using sandpaper, so leave it in the workshop. If you don't already, splurge on the good stuff.
A*D ointment; There is nothing worse than wiping your butt 20 times in a day. It doesn't like it and neither will you. I find using A&D before the process and after each movement, you don't get the buttburn from all the acid.
Baby wipes: If they are good enough for a newborn baby, then they are definitely good enough for an old cowboy or cowgirl. Remember, there is no reward for toughing this out.
Good reading material: Even for water, it can take a while for each emptying, and just when you think this wave is done, there's another one right behind it. Pull a Dick Dale and ride it out: Don't leave it sit too long, it is acid after all!
Good clear liquids: I always gravitated towards Gatorade. This unfortunately ruined me drinking some of them when I wasn't prepping, as I would smell it and my body would panic that a prep was coming, so use with caution.
The first meal: Prepare where you're eating afterward. Going over 30 hours without eating would be maddening for me, so I would always have a plan where to eat on the way home from the scope. Remember, you'll be doped up and doped out, so try to avoid thinking too hard that day: Best to leave a plan with your driver that is easily executed. [My favorite: Burger King ... and it was lovely everytime!]

Final Appointment

2009-03-20T14:30:00.035-04:00

Today was the final consultation with the surgeon before the first step. We verified the results from the bowel check and were relieved to see no signs of Crohn's. We went through the actual surgical steps again and I asked a slew of questions, some of which he would get a chuckle out of. [I found being prepared and having a list of questions ready for rapid fire allowed me to cover my concerns and avoid the "Oh, I wanted to ask..." moments.]

As I am in fairly good health, at least not dealing with any UC symptoms other than the dysplasia, the surgeons are expecting a fairly straight-forward recovery. I am strong, active, and all signs look good. This definitely helps my nervousness and mood going into the surgery. I can't say I'm terribly nervous, more anxious. What lays on the other side, I'm not sure, but this is the day I've been preparing for mentally for almost two decades: Let's hope I didn't fool myself on this one.

Okay, we need to lay out our plans on what to eat before surgery, as we know there's going to be some limits afterward. [Little did I know how long that would last!] Spicy chicken, check. Dunkin Donuts, check. Fast food, check. Okay, got all the bases covered! Considering I gave up trying to put on muscle a few months ago and just went for pure poundage, I've successfully added a few pounds to make it through any "lean" periods. [I would later find it's easier to lose than it is to gain with this surgery.]

The preparation for the surgery is the same for a colonoscopy: Drink, starve, and poop for an entire day before. GoLytely, Phosphosoda: I won't miss you for a single minute. Thankfully, this is where our paths separate. I'm not saying it's worth having your colon removed to not have to do a yearly scope and prep, but if you're having it removed anyway, it's surely a plus! Got my gatorade and my baby wipes: Bring it on!

Upper Bowel - Crohn's Check

2009-03-10T09:00:00.016-04:00

My wife and I decided on the second surgeon for a number of reasons. We felt he was more comfortable with questions and upfront with information. His practice has been specializing in colo-rectal surgery, especially JPouches for a years, especially laparospic. The time delay was a strike against, but everyone noted it was like that and you just worked around it or checked on time delays before coming. I'll be honest: I'd rather have to wait for a doctor that takes his time with his patients rather than ripping through them like a 6th grade quiz papers.

We let him know with our decision and he ordered a followup procedure to verify that I didn't have Crohn's. I hadn't had an upper bowel barium before, so off I went to have the procedure. The hospital is about 45 to 100 minutes away depending on traffic: Right, it's usually closer to 100 than 45, unless it's 5 AM.

This was my first time drinking barium, which I didn't find all that bad. It was similar to drinking toothpaste. I don't do this with any regularity, but at least it wasn't like dirt or slime: That would have been a little more difficult. [This would prove beneficial, as I get to have more in the future.] After slamming down some cups, then slowly drinking while the shots were taking, the radiologist noted I had a fast digestive process: Maybe this is why Wendy's never stayed around that long?

Surgeon Consult - #2

2009-02-24T11:00:00.011-05:00

Today, we met with our second surgeon. He was recommended by a friend and was noted as one of the best at laparoscopic surgery. We ended up having to wait an extremely long time in the waiting room, almost to the point of walking out. We finally got in and first consulted with his head fellow, which made us a little shaky. We finally met the surgeon, who was very on point and had an odd sense of humor, which obviously put me at ease.

We discussed the options, and talked about the procedure. He also did a suprise flex sigmoidoscopy (which I didn't prepare for) so he could check out how the rectum looked. After a little cleanup, we gathered again and he gave us his final thoughts, which was that I'd be a good candidate for the JPouch. I was obviously healthier than many persons he sees and felt with my condition and general health, I should tolerate the surgery quite well. [In retrospect, we were both horribly wrong on this account.]

He was very open with questions and even chuckled at some of my few direct ones. Maybe he doesn't get people with my attitude all the time and maybe he looked at it like a challenge... Who doesn't like one every now and again. He is typically booked 6 weeks out for surgery, so we picked a date, just to reserve, should we want to use him. The staff was nice as well. All said and done, it was a three hour appointment.

Surgeon Consult - #1

2009-02-11T13:15:00.021-05:00

Prior to today's consultation, my wife and I made a checklist of items we wanted to ask the surgeons. I'll be honest: I tried to find questions that were straight up direct. If you don't have a problem answering the hard questions, then you get to cut me up. Ideally, we were trying to find a surgeon that did the surgery at least partially laparoscopically, as I wasn't looking to have a zipper up my front side like the old-school surgeries (or emergency surgeries). I'm not so concerned about the scars (they always have interesting stories), but the recovery is supposedly less.

We met our first surgeon, fairly young, but quite congenial and seemed to have a good bedside manor. We liked the facilities, but was concerned that the surgeon did a hand-assisted pouch stitching. Not that it's inferior (some people think it's the best), but again, I didn't want a large zipper opening. He hadn't done many of these procedures, but it was his specialty, so that was comforting.

Based on my results, age, length of disease, etc., he felt that the jpouch was the best solution and I would be a good candidate based on my health and sphincter control. [I never thought I would ever be proud of "sphincter control", but I'll add that list of my "things I got going for me."] His nurse practitioner was wonderful to deal with and was a real joy to work with.

My wife and I left the office and traveled back home, thinking, okay, he seemed to be okay, but we couldn't sell ourselves on it. We had two others so we left our options open until we conducted the other consultations.

The World Wide Web

2009-01-30T15:15:00.000-05:00

Thankfully, I'm comfortable with the inter-web and found dozens of sources, articles, and even videos of JPouch surgeries, as well as just plain colectomies. Cleveland Clinic, Mayo, and other well known hospitals have been researching UC, Chrohn's, and different pouches and results for decades now. Thankfully, these are easy to come by, and, if you can handle some big words (and albeit, some boring filler), there is a lot of information to be had.

I also stumbled upon the JPouch.org forums, where it seems like coffee time all day long, and chances are, somebody has already had it and already had it fixed. It's been a wonderful source of information for use both before, during, and after surgery. This was an instant favorite bookmark, and became a daily regular visit.

After nights of research and reading, this seemed liked the right surgery to do, now it was just trying to find the right surgeon (and hospital) to do it. As we didn't want to have to travel to one of the major centers (ClevClin, Mayo, or NYC), we tried to find specialists within our region: I've seen what difficult hospital stays can do to families and I wasn't ready for that nor did I want to put my family through it.

Thankfully, my GI had offered some names he knew from his earlier years and other specialists that were near us. A good friend, who actually sells colorectal tools, got some names for me as well for other surgeons. We did some research, checked out the net, but had trouble finding any information on these surgeons. Well, let's go instincts and let's see how it goes. I like to interview candidates for work, guess this isn't much different, except now I should REALLY care who we hire.

The Phone Call

2009-01-22T01:30:00.002-05:00

My GI called in late January to question why I had not setup a followup appointment after my scope in the prior month. As I'm usually doped up after the procedure, I don't remember him requesting, as this was not our usual relationship. When I apologized and asked when he would like to see me, his receptionist said "How about tomorrow?" Immediately, I knew it was going to be "that" appointment that I've been preparing myself for over the past two decades. "Should I bring my wife?" She hesitated and said "You should do what you think you need to do." All righty then, that does it.

We headed right into his office and, as I pointed out before, he prepared for giving me more bad news. They had the biopsies evaluated (and re-evaluated by a secondary, much more notable office) and both concluded there was low-grade dysplasia. The good news that it was low-grade and not cancer. The bad news, the likelihood of this eventually TURNING into cancer was 100%: The combination of almost two decades of UC and the PSC, it was a guarantee that cancer would appear. Now, statistically speeaking, it was 100% based on prior cases, but I could be that first case that doesn't get cancer. Well, I'm not that big of a gambler and I'll play the lottery instead.

As he's explaining the situation and what options we had (suggesting the JPouch based on my history), my son is sitting on my wife's lap, who is bawling her eyes out. In order to not have my son terrified of doctors (because he sees them A LOT), I continued to keep a happy face and a forced smile. At a certain point, I think the doctor was a little freaked out by that and that I wasn't really grasping the situation, but A) I wanted to make sure my son was comfortable and B) I knew this was going to happen sooner or later. I've done my crying, my denying, my anger, my depression years before. This is the day I always knew was going to come and was just waiting for. This sounds sort of grim, but I've always lived life that it wasn't free and nothing was guaranteed. As I had said prior, I never thought I'd live to be 35: This was just a few weeks short of my 36 birthday. Coincidence or did I make this happen?

My wife and I readjusted some of our priorities and started getting on the horn with some surgeons in the area and finding out what this whole "JPouch" was all about. (I have to admit, the fact that it's called "Jay" had a certain ring to it as well.)

Routine Scopes

2008-12-15T12:28:00.000-05:00

For the next 11 years, I went through routine colonoscopies on a yearly basis. For a majority of the time, they were fairly uneventful. I had two situations where I actually bled out after polyp removal where the cut did not heal immediately. These were followed by quit jaunts and stays in the hospitals to ensure I didn't empty completely and typically to rehydrate. I never needed a transfusion (thankfully), but the doctors seemed more concerned than I realized. (Here I thought the lightheaded feeling was due to the chain smoking I was doing.)

I had two situations were pathology reports came back "indeterminate". This was a comfortable way of them saying "we aren't sure if it's cancer or not". I can honestly say those were two of the longest spans in between scopes, even though they were only 3 months. Thankfully, on followup scopes, the reports came back negative and we were all clear. I'm fairly certain we went on to party on those evenings.

As part of the routine checks, my previous GI noticed elevated liver levels. Ironically, so did my attempt at personal life insurance. After a set of upper GI scopes and a liver biopsy (now THAT was interesting), my GI confirmed primary schlerosing cholangitis (or PSC). This is a liver disease which sees the shrinking or narrowing of the bile ducts out (or inside) the liver. This is something that may need to be addressed in the future, but, due to other GI issues, this gets sidelined until something really breaks. Basically, if you have a fever and your pee is dark and doesn't stink, that's bad: Time to see the ER. So we wait.

After moving around, I returned near to our prior place of residence and started to see my previous GI. [I was thankful for this, as I felt he was one of the best I had ever seen, unfortunately, he was always the one giving me bad news. Bad for him, in that neither of our lucks changed.] I scheduled my yearly scope with him and reminded him to knock my ass out this time, as I've remembered way too many scopes and they are far from pleasant. Not a real amount of polyps (compared to previous scopes) and only acute signs of UC and scarring from the "good 'ole days". This was typical, so away we go and await another year... Or so we thought.

Accident for the Better

2008-12-14T22:56:00.002-05:00

It was early in my last semester when I met my wife at college. How, where, and why are an entertaining story on it's own, but I'll save the details for another day (and so those that don't know get too much information.) That morning, Chris H. and I were late getting to the lounge on campus to watch the Formula One race. I popped a tire on the way and ran there with the bike on my back (I guess I was in decent shape now that I think about it.)

After walking back to the house after the race, my wife (only an acquaintance at the time) was there and we ended catching lunch. That was the first day in years that I hadn't had urgency and actually had normal bowel movements. After applying the scientific method the next day, I realized it was milk that was killing me all along: I always ate two bowls of cereal every day for breakfast and ALWAYS had whole milk. That day I never had breakfast. [I once told my grandmother that whole milk was better than sex. Looking back, I was only getting milk in my diet, so that statement held true then. She still reminds me to this day, but I can't say the comparison still holds true.]

I immediately cut out a large part of dairy from my diet and immediately saw an improvement. I still had minor flare-ups from time to time, but was down to maybe two times per day, rather than the six I was having before. My old roommate still gives me shit when I see him, as he used to drink my milk (whole) and I would tell him it was the only thing that made my stomach feel better. [Especially when adding Khalua.] Who knew it made my stomach feel better but destroyed my intestines.

My wife still thinks it was her presence in my life that 'cured' me, and not the milk. Although, she hasn't taken responsibility for the issues I'd have later in life, so I don't let her get away with a partial cure. For the next four years, I saw remarkable improvement by simply cutting back on my dairy. On the days I would have it, I'd know it and typically get punished for it. I slowly started to get 'normal', which for me, was about 2-3 movements a day. The unfortunate part was I would still have accidents, as control was still an issue from time to time. Thankfully, this would be rare but typically nowhere near home.

We entered the maintenance phase, as my next colonoscopy wasn't for another 3 years. The flareups were few and far between but having my wife's cooking definitely helped I didn't really eat well when she wasn't there and typically drank too much as well. Actually, that statement is true for the length of our entire relationship. I finally started to put on weight, even without exercising, and I wasn't so Skeletor looking as when I first graduated.

Thoughts of Removal

2008-12-14T22:55:00.002-05:00

Not much changed over the next few semesters, other than watching my GPA plummet (sorry Ma) and the thought that living with UC was becoming too much of a burden. I was having fewer bleeding flare-ups, but I was always still touch-and-go with being able to hold it and having it catch me off guard. As a result, I started to consult some Dr. friends of mine (actually, parents of my friends) to get their input into possible outcomes.

At the time, I never contacted a proper colorectal surgeon, or I think they would have pulled it at that point in time. Those around me talked me out of it, with the thought of whatever we have now will only get better later. [They were right about that one, as I would fine many years later.] I just succumbed to how life was gonna be and just try to work around it. At the time, it was frustrating as it could possibly be, but, I must say, I've got some funny stories (of course, potty stories) as a result. At the end of the day, if you can't laugh at the odd places and times you've had to defecate, well, I guess there's other things you could laugh at, but these were far too frequent and real.

As with many college students, I was finding alternative medicine. This was able to assist in slowing down my bowels, as the meds I was taking were just not cutting it. This wasn't a pleasant realization to my mother (don't ask how I botched that conversation), but I think she was happy that it helped. Now, it may not have been the MAIN reason for it, but what the hell, kill two birds with one stone. Combining that with a college budget (and our mess halls), I can't say I ever really had a diet. Again, to young and dumb to figure that part out. Ironically, the easiest thing was the key piece that I was missing.

UC: The First Year (pt 2)

2008-12-14T22:54:00.002-05:00

The summer was interesting, as it was the first time I tried to hold a respectable job with having UC. I was able to find work (thanks mom) at a factory working the third shift. It was straight forward work, simply stamping pieces, so I got to sit for 8 hours a day. It also allowed me to utilize the bathroom frequently, as I was still going fairly frequently at that time.

I returned to school with a new vigor (and the hopes of not blowing another semester of crappy grades.) I tried to apply myself into my schooling, but the weight of having UC and constant flare-ups, made focusing on anything very irritating. Sleep wasn't what it used to be (although better than the previous year) and constant trips around the bathrooms had it's toll on some friendships (and their families) as well. [I remember one father who was actually irritated that he had to pull over within minutes of leaving home so I could empty out. He seemed a little irrational about it, and, ironically, didn't last much longer in that family.]

Unfortunately, I would start smoking again that year, and this time for a loooooong time. I remember this year being the first that was emotionally, physically, and spritually draining. My father's health was showing it's first sign of problems and surgeries that would try to correct it. I've never blamed my family for my sickness, no matter how much of a pain in the ass I was as a son: It was never their fault and I hope they never think that. I've always thought about the timing/coincidence of the events that circled around that previous autumn and wondered, how truly connected can you be... how wired are we... how strong is the mind and is it controllable? [Unfortunately, many forays in later years through different psychology classes and studies wouldn't give me those answers, but merely give me more questions.]

The days rolled by, one after the other, with the same focus. This was the first time in my life where I truly understand mortality: At this age, we're supposed to feel immortal, like nothing can hurt us, like we will live forever. Instead, like learning that there is no Oz and only the man behind the curtain, bitterness begins to exude. I wasn't acting like I was immortal: I was acting like I wasn't going to live forever. It wasn't that positive, "I'm going to take on the world and live it." It was more of a "Who gives a shit". Somewhere around this time, I remember thinking, I'm never going to live to 35. [That age would ironically later actually come to mean something.]

UC: The First Year (pt 1)

2008-12-14T22:53:00.008-05:00

I headed back to school with a new diagnosis of ulcerative colitis, and the start of medication. A hefty dose of prednisone to try and get it under control, along with (at the time) an experimental drug of Asacol. The next few months wouldn't necessarily be any different than the rest, although not nearly as much blood, but just as much urgency.

I'm fairly certain this is when my sleep problems began: I can't say it was because of the UC, or because of the psychological effect of the diagnosis. I was already a night owl, but even owls should sleep. I was not getting up as frequently to use the facilities, but enough that I don't remember making it through every night.

I can't say I had the greatest diet to assist in my healing, as Domino's delivered and Taco Bell was on campus (I think at that time.) I was spending many late nights playing table tennis or pool in the rec room (a pattern to continue for many years) and chain smoking like a coal miner. Being 19, I can't say I was ever really looking out for my health. [This would change later in life, but more because of my wife than of my own accord.]

I never really lost weight, as I was as skinny as a beanpole when I got to school: I just never really put on any weight. "Freshman 15"... Yeah, right. Somebody out there got 30, cuz I didn't get any. It would take me years to finally put on weight, four years for 10 lbs. [Ironically, after my colectomy 18 years later, I would be back to my freshman weight, looking alot worse for wear though.]

I don't really remember having many accidents, but I've had to pick some fairly interesting places to avoid them. Typically, I'd get about 5 minutes to choose and commit, or else. Many of my choices had to occur outside, around the dorm rooms. Apologies to the persons who stumbled across those: Much like a wild animal, I tried best to cover my tracks.

By the time I made it back for summer break, things had calmed down, but still going frequently, but slow enough to survive.

The Background - Initial Diagnosis

2008-12-14T22:52:00.000-05:00

In early January 1992, my parents took me to our local physician who noted blood (unseen) in my rectum. That's all it took and off to the ER we went. That was a Thursday. On Friday, I had my first colonoscopy: To this day, the 2nd worst preparation I've ever had. Back then, they were still using Colyte (damn the manufacturer who thought that was a good product.) I merely remember reading on the toilet (again, why bother running back and forth between bed and the toilet) and forcing this salt water down my throat. I had drank heavily in the past, but this was something completely different.

With the scope, they confirmed Ulcerative Colitis. On Monday, they proceeded to do an endoscope to rule out stomach ulcers (like they didn't find enough in the colon.) Nothing seemed to be awry with the upper GI, but the lower GI was in bad shape. While the bleeding was no longer substantial or noticeable, the ulcers on the ascending side were still active but digestion was making it difficult to see with the naked eye. It is possible, I found over the following years, that it still has a distinctive smell: This would actually lend itself to knowing when it wasn't just bad food or beer causing me to be frequenting the toilet.

One upside to that week was I was able to read the entire first David Eddings series (which I had putting off for a year).

I was just about to turn 19 years old, supposedly the prime of my life, and was being lectured on an "incurable disease" and all that came with it. The one solution they could offer was to take the entire colon and live with an ostomy. That wasn't in play then, but would become apparent in the next few years, when things just weren't getting any better.

This outlook gave me an interesting way of viewing the world from that point forward: The thought that I may not live that long and if so, with any quality of life. It gave me the opportunity to not take things for granted and take things for what they really are: The realist in me (no longer the optimist that disappeared that week.) At the same time, on came a disdainful attitude (sardonic as named later in life) that would cause issues with not only myself, but those around me (most notably my parents.)

The Background - The First Issues

2008-12-14T22:51:00.027-05:00

In October of 1991, I began bleeding signficantly when moving my bowels. My movements were becoming much more urgent, almost uncontrollable. There wasn't a bathroom within 5 miles that I didn't know about, nor how to get there, nor when it was open. At the worst of days, I was using the bathroom over 20 times a day (22 was the worst.) There were nights that in lieu of lying back down and getting back up, I just took my pillow and slept in the bathroom on the john. My legs didn't recommend it, but I knew I'd be able to make to the toilet in time.

Over the course of the next few weeks, the bleeding began to subside, but the urgency and movements were still there. Many people have asked about smoking (which I did at the time) and how it affected, and to be honest, I can't remember back then.

Thankfully, I wasn't attending many classes back then anyway, and spent much of my time in bed, just trying to recover from evenings of no sleep. When I did attend class, they were surely interrupted with a urgency to get to the bathrooms. Unfortunately, we didn't have the most updated of facilities, so there was not many at our disposal. As a result, I've often had to steal quickly into the ladies room out of necesity for fear of not making it up to the end of the hall, note it was occupied and make it back. (Thankfully, they didn't have cameras either, as I'm sure that would have drawn some issues as well!)

[Future point: I am making a list of all the 'unique places' that I had to use while dealing with UC and this is defintely one of them.]