Double Check Your Clip

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

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)

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

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

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

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

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

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:

1. No matter how good you are on paper, it doesn't necessarily translate to the field.  e.g.  Spain.
2. 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.
3. 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.
4. 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.
5. 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)
6. 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.
7. 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

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

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

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

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

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

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

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

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

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

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

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?

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

... 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

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

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...

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

"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

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

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!