Monday, December 28, 2009

Back Home From the Holidays

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... !

Saturday, December 26, 2009

Sugar Revisited

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.

Thursday, December 24, 2009

The Point of a Journey

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

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.]

Tuesday, December 22, 2009

Call Back

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!

Sunday, December 20, 2009

A Healing Plateau

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!)

Wednesday, December 16, 2009

A Step in the Right Direction

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.

Monday, December 14, 2009

Fleet and the Scope

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.

Thursday, December 10, 2009

Rice Krispie Treats: Not Only For Kids

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.

Tuesday, December 8, 2009

Followup #3 Post Takedown

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.

Monday, December 7, 2009

Barium - You Can't Stay Here

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.

Sunday, December 6, 2009

Sick And Tired

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.]

Saturday, December 5, 2009

Tired (hopefully not sick)

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.

Thursday, December 3, 2009

Scan It - The Third

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.

Wednesday, December 2, 2009

Roller Coaster

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.)