I was diagnosed with UC in September. It spans the entire length of my colon. The descending/sigmoid portions show chronic involvement and the upper portions are more acute. What lead to my diagnosis was different than what appears to be the norm and I think that's why I'm having a hard time believing all of this.
I've never had issues with frequent bowel movements or diarrhea. There were blood and mucus at times. I attributed that to internal hemorrhoids. My bowel habits changed during pregnancy so I thought nothing of it. After a few years things regulated and I seemed fine. Fast forward to this past summer...I had a feeling something wasn't right. I couldn't put my finger on what. I just didn't feel well. I started getting anxious. I'd never had anxiety problems. On top of that, I was frequently dealing with the type of abdominal discomfort that felt like I had a shelf right above my sternum. In July I noticed I hadn't been going to the bathroom much. Once I started paying attention, it's like things stopped all together. No matter what I did, I couldn't go. I stopped eating because I was afraid about
not being able to go. I tried everything...bag enemas, stool softeners, Ex-Lax, Miralax...nothing. I ended up in the ER after 2 weeks of not going...even after Mag Citrate! They tried a molasses enema with no luck and ordered a CT. That's where thickening of intestinal wall was noted and I heard colitis for the first time. I also had platelet levels that were high. I was put on Flagyl and Cipro in the ER and waited 3 weeks before I could see a gastro.
The Flagyl allowed me to be able to go again. How miserable was that drug regime, though. I was so nauseous. I lost 15 pounds during those 3 weeks. I was sure I had some weird infection and that the colitis wasn't anything that would stick around. I will say I saw blood and mucus when I started going again. In fact, my rectum was severely inflamed. I felt pain internally and around to my girl bits. I attributed that to all of the methods I tried in order to go. It was nuts.
When I finally had my colonoscopy, the macroscopic results showed ulcers (though they looked pretty tiny and faint to me) throughout my colon. There were a lot of visible white lines...kind of like marbling on a steak... but the lining was relatively pale with tiny red dots scattered around. It was clear there was swelling. The pathology showed chronic disease in the descending colon and active/acute in the rest. I was put on Asacol and Canasa. Since I didn't really have symptoms beyond the not going issue that lead to my diagnosis, I was feeling pretty good. This was especially true once I wasn't taking the Cipro & Flagyl and could eat again. Within a week of starting Asacol and Canasa I was having a daily bm first thing the morning. Everything was working like clockwork. I'd never been that regular!
Fast forward to a few weeks ago...I had a follow-up colonoscopy in early January and my doctor was very happy with the macroscopic results. There weren't any ulcers. She said I was still slightly inflamed because the lining hadn't healed to the point you could see the threadlike vascular make-up, but I was looking really good. I went home with a smile thinking I might be able to give up the Asacol and just be on Canasa. Then came the pathology report. My disease had progressed on a cellular level. Biopsies in the areas that had presented as acute were transitioning to chronic. She said if the mesalamines were going to do the trick, that wouldn't be happening. I am now moving to 6mp. I took my first dose tonight. She knows I'm very conservative with medication and isn't bothering with steroids yet. She's hoping the 6mp will nudge me into remission. I'm hopeful, but not sure what to expect. I'm nervous to give up the Canasa and Asacol because I'm worried I'll lose the ability to go. I understand 6mp takes a while to work.
I still can't believe this is really happening. I'm relieved to not have the urgency, blood and mucus. That said, it scares me my colon can be this sick and I can't feel it. She even comments on how lucky I am to feel so well for as sick as my colon was and is. I'm sure I'll have regular colonoscopies for the rest of my life, but I'm worried that I may not know I'm in trouble until it's late in the game.
I'd love to hear from those of you who have active colitis without symptoms. How do you tell you are flaring? I do have joint pain and menstrual irregularities. Those seemed to develop in July when everything kind of tanked. Are those clues?
Any input would be appreciated. If it's necessary to know, I'm a 42 year old female and my pregnancies were at 33 and 35.
Thank you for reading!
Post Edited (Spartan4Life) : 1/31/2014 7:39:53 PM (GMT-7)