Toward the end of the summer in 2001, I started getting sick. A few years earlier I had been diagnosed with Ulcerative Colitis, probably around 1998 or 1999, I don't exactly recall now. During that time it had been kept mostly under control with Asacol and, occasionally, Prednisone. Living in Illinois and working for Motorola on an internship in 2001, we drove back to Michigan for a weekend where I underwent what I would call an experimental treatment using Remicade. The effect was immediate. I was feeling perfectly normal again within about two days. Sadly, we found out later that Remicade only works once. Apparently that's one of the sure signs that it's Ulcerative Colitis, not Crohn's.
When we left Illinois at the end of the summer I was starting to feel sick again. We stayed with we wife's parents for a while and just as we were supposed to leave for school again, I went downhill fast. I was admitted to the hospital and my doctor recommended surgery. We talked with the surgeon and ultimately agreed. The only cure for Ulcerative Colitis is surgery, and though it is major, at least it is a cure.
The surgery was scheduled but because it was to take place on a holiday weekend, September 1, 2001, there weren't enough surgery nurses available. My doctor believed I was in such urgent need of care that he sent me off to another hospital. It was safe to say this was the absolute low point in the whole experience. Having not eaten in over a week, tired, unsure of what was going on, and in-between doctors, it was a scary time. We learned a lot about ourselves and about God during that time. He had a plan for us, though.
We met the new surgeon at about 3 a.m. in the emergency room. I've never known a doctor with such knowledge about anything. I instantly knew I was in good hands and things started to look brighter. I was admitted to my second hospital and the biggest difference was that I now had a single room. If hospitals could change one thing it should be that every patient has a private room. I am convinced that did more for me than anything. It was less embarrassing for me, easier for my family to visit, and much quieter.
After several days of improving my health with Total Parental Nutrition and large doses of steroids, the doctor believed I was now healthy enough for the surgery. For those of you not familiar with it, I won't go into detail except to say that it consists of the total removal of the colon and the fashioning of the end of the small intestine into a pseudo colon. The sugery took place on the 5th or 6th of September, I have trouble recalling now. I don't remember much about the day except that I woke up at one point and told my wife and my pastor to be quiet because, in my drugged-up state, I thought they were being far too loud. My wife still likes to pick on my about that.
There wasn't really anything remarkable about the recovery. They had me sitting up in bed and then standing up the same day. I was walking the halls the next day. Really the only thing imprinted on my brain was waking up and turning on the TV the morning of September 11th. Two huge events in my life at the same time. I'll never forget those few weeks.
I left the hospital that week and went home to stay with my wife's parents. The surgery had left me with a temporary illeostomy, and the disease had left me so weak I needed help to climb the two steps into the house. I had lost 50 pounds in about three weeks. Needless to say, we weren't going back to school that semester. I was on pain-killers for a little while but didn't find them necessary for too long. We went on walks every day, pushing to get a little farther each time. If I hadn't been recovering from a massive surgery, it would have been the most relaxing time. We watched movies, read books, talked and enjoyed the autumn leaves. It really was a time of peace, and probably just what I needed to get better.
My second surgery took place at the beginning of November. The illeostomy was reversed and I was "like normal" again. I stayed in the hospital only one night, thank goodness, and then went home again. By Thanksgiving I was able to eat almost all foods again, which is good because I love Thanksgiving food!
We stayed with my wife's parents through Christmas and the start of January. Feeling much better, it was then time to go back to school. I was completely recovered from both surgeries, and other than a weight limit to my lifting, I felt quite good.
I stayed in frequent contact with my surgeon for the first year and saw him several times. After that it was about every six months and then yearly. When we moved to Ohio in 2004, he recommended a doctor here, and I am now seeing him once a year. I can eat anything I want but, as with most things in life, moderation is important. Drinking water is very important because I have no large intestine, which in most people is used to absorb water.
I consider myself very lucky that the surgery went so well and that I had such an outstanding doctor. There's no way I could have done it without my wife. She supported me even in the worst of times and was stronger than I would have been in the same situation.
I don't bring this story up in normal conversation, but I'm certainly willing to talk about it. If anyone reading this has any questions, I would be happy to try and answer them. Feel free to email me at: 