Married father of 3. I have been flirting with flares on and off since I was diagnosed back in the summer of 2011. I have been spared the true nastiness of this disease–I realize it could be much worse.
Some more about me:
I enjoy reading, hanging out with the family and early morning walks. I used to run long distance, but that started forcing me to make bathrooms where there were none–had to give that up because that can cause a problem in broad daylight. I live in the Florida panhandle and have access to one of the most beautiful beaches in the world, so I take advantage of that any chance I get.
Current Colitis Symptoms:
A little bit of blood, mucous, and gas.
In a bit of a flare at the moment. About a month ago both of my daughters came down with Strep and that sent me into a tail spin. Before that, I had been in a 6 month remission so to speak–no blood, mucous, or any of the nasty stuff. My gastro calls my condition mild to moderate, but stubborn–it involves the rectum and a little of the sigmoid colon. I am currently going 3 to 5 times in the morning. Just a little bit of blood in an otherwise decently formed poo. For this flare, I have noticed more mucous and gas. Luckily, I am an early riser, so I am usually done with the toilet trips by 7am. After that, I have a pretty good day with relatively no symptoms until the evening when I get gassy and I have to clear out the mucous–usually just a couple of quick trips to the toilet takes care of it. I able to sleep through the night with no problem. No cramps, no pain.
I went for my quarterly visit to my gastroenterologist and told him what was going on–just a small flare that I am getting through. He now wants me to try 6MP or Imuran and get “completely symptom free”. I told him I didn’t want to trade colitis for cancer and he just smiled and said there was only a “small” risk of that and that leaving a colon inflamed has risks too. I don’t know if I am quite ready for that yet. My family doctor, who I have known for years said in the past not to go on immuno suppressants unless it was absolutely necessary and to try everything else first–there are some bad side effects. He is under the impression that diet, anxiety, genetics and environment play more into this condition than the medical profession lets on–just no research (I agree with him). I had mixed results with Enemas–hydrocortisone seemed to make it worse while the mesalamine enemas seem to frustrate my colon, but eventually they get me to a recently better state. I think I struggle with the preservative in those things. I asked my gastro to let me try the foam and possibly switch me to Apriso just to see if that gets me completely symptom free. I have never fully devoted myself to the SCD or any other type of diet, although I have recently cut out milk products and that has made a huge difference. Probiotics have also been beneficial.
The way I see it, I don’t know if I will ever reach a perfect state. Even when I am in remission (no blood or mucous and formed poo) I still go to the bathroom 3 or 4 times in the morning, but it doesn’t interfere with my life. I feel like if I take 6MP/Imuran that it would be like turning a water fall on a match.
I really need to know what other UCer’s experience has been on these drugs good and bad. Is this the route I really need to go?
Lialda 4X daily
15 billion Probiotic
written by Dallas
submitted in the colitis venting area