First Post - Catchup and Prep

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

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

Todos for the week:

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

Step 1 - Surgery Prep

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

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

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


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

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

Final Appointment

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

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

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

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

Upper Bowel - Crohn's Check

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

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

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

Surgeon Consult - #2

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

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

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

Surgeon Consult - #1

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

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

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

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

The World Wide Web

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

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

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

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

The Phone Call

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

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

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

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

Routine Scopes

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

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

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

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

Accident for the Better

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

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

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

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

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

Thoughts of Removal

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

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

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

UC: The First Year (pt 2)

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

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

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

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

UC: The First Year (pt 1)

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

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

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

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

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

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

The Background - Initial Diagnosis

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

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

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

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

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

The Background - The First Issues

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

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

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

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