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.]