Hello all,
I've browsed this forum for the past few weeks, since being diagnosed with UC. I've found a lot of good information, but also wanted to share my story. I am hoping that maybe I can help others who be struggling with the symptoms of UC, and maybe help get myself more educated on the disease as well.
I am 31 years old and started having the typical symptoms (bloody stool, urgency, etc) late last year. I dealt with it for a number of months, mostly because I was too stubborn (and maybe too scared) to go to the doctor. I finally couldn't tolerate the issues anymore and went to the doctor. At first they thought that I might just have internal hemorrhoids, so I was scheduled for a colonoscopy. Biopsy was taken during the procedure, and the surgeon said that he found no hemorrhoids to speak of, but I had severe proctitis. I was started on Sulfasalazine and made an appointment with the Gastroenterologist.
While waiting for my appointment date, I was having some relief from the Sulfasalazine, but it also caused me plenty of side effects. I had issues with headache, stomach cramps, and loss of appetite. It was not pleasant, but it was at least better than running to the bathroom so often. Just a few days before the appointment I had a severe reaction to the medication after I was out in the sun too much. I ended up with a rash all over my body for 3 or 4 days. I immediately stopped taking the Sulfasalazine.
I then met with the Gastroenterologist and was diagnosed with UC, more specifically Ulcerative Proctitis. I was started on Canasa 1000MG 1x daily for 8 weeks. I was told to try this for 8 weeks and see where things stood then. As of right now, I'm just over 2 weeks into that. The Canasa has helped a ton, but I'm still having issue with slightly loose stool. No bleeding and no other real issues, so I'm glad to see progress. I guess this brings me to my question(s):
The Gastroenterologist had to cut our appointment short due to an emergency. I didnt really have time to ask many questions, however I really am not sure I had many until AFTER the fact (go figure). I guess I'm wondering what happens after 8 weeks? If things are good with my symptoms, do I stop using the Canasa? Do I take something else for "maintenance"? I'm mostly interested, because it would be nice to stop having to stick something in my rear end every day.
I understand that UC is more of an on/off type thing, where you go though bouts of remission and then deal with flares. Is there an "normal" amount of time that people who have their symptoms under control go between flares? Lets say I respond well to the Canasa in the long run...would I likely use it again for a number of weeks upon flare up?
Obviously I havent been under control or in remission to deal with an actual flare, as my initial symptoms are still being worked out. I guess I'm just interested in what I might expect. Thank you all in advance for your answers, as this community has already been a great source of information for me.