I recently received a text from someone that thought an article I submitted to the newspaper about Krystal Carbone was about me. Wow! That story was about one of my Team Challenge teammates, Krystal. But the text got me thinking-there are a couple of similarities. I too had my large intestine removed. I was fortunate enough to have had the right surgery. I did not have the complications from surgery that Krystal did and I was able to be “reconnected” a year later. But every day for the past ten years, whenever I go somewhere, my first thought is, “will there be a bathroom?” I can’t be too far from a bathroom. If I’m going to a place that I’m not sure about, I’ll probably not eat anything so I won’t have to go to the bathroom. When you go through something like I went through, like Krystal is going through, you never forget what it felt like at its worst. After my first surgery, my tissue was sent to the lab for a pathology report. I had been diagnosed with Ulcerative Colitis, but my intestine was the consistency of wet toilet tissue when the doctors finally got in there to take it out. I was a lot worse than my doctor suspected. So a pathology report had to be done. The results were inconclusive. The doctors couldn’t tell if I had UC or if it was in fact Crohn’s Disease. If I had Crohn’s, that was a problem, the surgery I had just undergone was not reversible. They removed 5 feet of my large intestine. All I had left was about 10-12 inches at the end. If I had Crohn’s it was bad because there is NO cure for Crohn’s. It can affect your entire digestive track: mouth, esophagus, stomach, small intestine, large intestine, everything. If I had ulcerative colitis, my original diagnosis, I was cured. With UC the ulcers only affect the colon: no colon - no ulcers in my colon - means no ulcerative colitis.
The test results were hard to take. My surgeon and I had discussed all of my options based on my UC diagnosis. I was going to have a pouch built, a J-pouch. This pouch is built from the small intestine to act as a make shift reservoir. Because of the test results, that wasn’t possible any longer. If the doctor built the pouch and the Crohn’s came back, I’d be in a very bad situation. At that point I had only 2 options. The first one being keep my ileostomy. This is a bag on the outside of your body to collect waste. It’s the same as a colostomy, but the doctor used my ileum (small intestine) because I had no colon left. The second option was to risk reconnecting my small intestine to what was left of my large intestine. My doctor assured me that if it didn’t work, I would just go back to the ostomy, no problems. I’ve been “reconnected” for 10 years now. It’s true, I go to the bathroom more than one person should, but I’m here and I don’t have an ostomy. There may come a time when I will have to choose that route. Hopefully never.
So many people suffer with these diseases; so many people suffer in silence. We need to find a cure