Posted 6/12/2009 8:58 AM (GMT -8)
Well... I thought maybe I would be done with this mess... I know some of you have followed my issues a while ago & said you had thought it was a good probability of being crohn's... I really think so as well. Unfortunately, the GI I was seeing who thought crohn's at first as well, changed her mind & told me it was IBS. When I began having vomiting & stomach problems, I felt pushed aside & like no one would listen to me. So I took the advice of my PCP who said I might have to end up at a university hospital to sort it all out. I contacted a very knowledgeable doctor at the U hospital & asked if possibly it could be crohn's after my second c-scope was negative for anything. She said she wanted to see me. I have since returned to her after getting her all my medical records & she now says that she believes I have microscopic colitis, but it still may be CD since CD resembles microscopic colitis at the early stages of the disease. I was just wondering if anyone else had this issue. I know sometimes it is difficult to get a CD dx, so I thought maybe someone else may have ran into this.
I guess I should explain more for those that haven't read my earlier posts...
This all began in June 07, but possibly earlier because I began getting sick in the spring. The flu (or what I thought was the flu), then a bad cold, then the flu again, back to back. In June, I began having problems with my shoulder/back again, and this time the pain wouldn't leave me. I then had a bad kidney infection & everything began a downward spiral thereafter.
I began losing weight. I lost 50+ lbs total, 25 lbs in 6 weeks at the beginning, (although I have gained a little of it back maybe 10 lbs. by eating high calorie foods. ) I was so tired & achy & just having a hard time functioning. At this time, my brother was dx'd with pancreatic cancer, so a rush was on to make sure I didn't have cancer. All my tests came up fine. But the rib pain I was having continued. They bugged me about my BMs, but finally, for the first time in my life, I was going daily (a couple times a day) but since I normally was constipated, I was not bothered. Finally my doctor tried a hemoccult test which came up positive. I began looking & noticed very little blood now & again. A c-scope & EGD were scheduled. It was after this that I was told I had colitis, but it would clear up in a month or so of being on azulfidine. When I was done with azulfidine, I began losing weight & soon began having problems digesting food. Then lots of mucus. Ick. I was put back on azulfidine & sent to a GI.
That GI said I probably had crohn's. She wanted to do a small bowel follow through & when that came back with inflammation, although no strictures, she said I had IBD & started me on prednisone. I was tested for parasites & all & celiac, everything negative. I also had tried all the food allergy diets, even the lactose free diet, without success. I was on prednisone when I had my next c-scope, a couple months after the SBFT. I still had pain, but my scope was clear. I was told it was just IBS, that I never had IBD & to quit taking both medications. I did.
A few months later, I began having vomiting. Wake you up in the middle of the night vomiting. Sharp stomach pain. Nausea. Just lots of abdominal pain & issues. Borderline/mild anemia. I was put on prilosec & still had problems. Sometimes the vomit was really thick & pink. I couldn't eat anything without pain, so I was put on carafate as well. I went back to the GI (Jan. 08) & they did another EGD. This time, I was told I had some gastritis & ulceration. They did the Prometheus test, negative. The EGD pathology came back as "chemical gastritis", but I hadn't been on any NSAIDs of any kind since all this began (I am NOT stupid, I know what can happen, and I followed the dr. orders to a T). I was annoyed they kept trying to blame this all on NSAIDs, which I wasn't taking. I told them I was still having lots of pain & vomiting & they basically shrugged their shoulders & said they didn't know what to do with me. That's when I contacted the university IBD clinic director.
At first upon seeing her, she said without my records, she still felt it was IBS, like the GI. But she decided to see me again in 3 mos. & once she could go over my records & get the slides from my scopes, she would let me know if IBD was possible or not & what could be done.
I had been doing pretty well those couple months, besides this bump that I got on my bum. It was kinda like a pimple, but wouldn't go away.
So! I went back to the university doc Monday. She was very nice. After looking at the scope slides & my records, she said at this time they feel I have microscopic colitis. She said it still could be crohn's, because CD's pathology looks like microscopic colitis early in the disease. Once she looked at my bum bump she said it is something that people with crohn's frequently get... I assume it is an abscess. She put me on flagyl for 2 weeks for the bum bump. She also put me on Asacol (which I tried to fill, but just can't afford at $321 a month). I am to call her if I get sick again or lose weight or the bump starts to drain. If any of those things happen again I am to get another set of scopes from her. I see her again in September if not.
I was already familiar with microscopic colitis because at my first scope the surgeon said my ulcer looked like lymphocytic colitis. Upon looking into microscopic colitis online, it says that it usually causes watery diarrhea (which I have frequent BMs between 3-6, sometimes 7 or 8, but they are usually formed, a bit soft, but not D). No blood with microscopic colitis, which I still get mixed in with the mucus, and usually only modest weight loss, not 50 lbs. The thing is, I have been working hard to keep my weight up & now doctors act like since my weight is good, I am fine.
Anyway, I was just wondering if anyone else ran into this? If you have micro colitis, what are their symptoms? Is there anything else I should be doing? Will flagyl make this bump go away?