Posted 8/25/2007 4:55 PM (GMT -6)
Oh my god.
You guys are not going to believe this. Listen to this story. It will blow you away. Its a long one though :)
So I moved to Seattle 3 weeks ago. about two days before I left, I started to "flare". My flares are almost completely debilitating: Abdominal pain, Diarrhea 25 times a day, no eating, no sleeping. Awful.
I have been doctor hopping all summer. Several have become very skeptical about my symptoms compared to my pathology. They also feel that my symptoms are very, very strange for Crohn's Disease.
So when this flare occurred, I did something that scared the crap out of me. I didn't take steroids, and instead I took a very mild IBS medication, Levbid.
Within a few days, the Diarrhea was gone. I could eat again, but the abdominal pain remained (it has been around all summer, since I let college). So I thought this was interesting, but certainly didn't rule out Crohn's Disease. Basically, I suppressed my flare with IBS medication!
So I go to a Seattle Doctor. I start out the appointment with "Please help me solve this mystery!" I tell him the whole story. He was great. He listened intently to my wacky 5 year odyssey.
I have posted my story before, but in summary, basically I have been attending college for 4 years. I never once got sick at college. Not even a little bit. However, during the holidays and summers, I got sick almost all the time. I dreaded the summertime!!!!! How weird is that? I knew there had to be something weird going on.
When I finished my story, my doctor leaned forward and he said "I'm going to recommend something that could be dangerous, but if you're willing, I want you to try it."
He told me to stop taking all meds for my Crohns. At the time that meant Colazal and Pentasa that I was kind of mixing and matching.
Within a few days, my BMs were completely normal and my abdominal pain vanished. I felt entirely healthy for the first time in years.
I have been taking mesalamine in various forms for the last 5 years, and I'm allergic to it :)
Since the discovery, the evidence has mounted. My doctor noted that at school, I was horrible about taking my medication, therefore, I wouldn't get sick. During the summers, I had more free time so I popped more pills.
My doctor noted that I never had one of my "flares" until I started taking mesalamine products.
When I "flared" at 20mg prednisone this summer, it was the day after I took my first Lialda :)
He called me a few days ago, and told me that he had reviewed my records over the past seven years, and he found nothing diagnostic of Crohn's Disease. He said that if I was asymptomatic for the next few months, he was going to take it off my chart.
It's funny how I was just kind of being polite on the phone... saying "Oh great! Thats awesome; cool". As soon as I got off the phone, I fell to the floor and started balling.
But wait guys... I'm here for my reality check... I need you guys to verify this b/c there is still a lot that has not been explained. I have reviewed this information with multiple doctors, and they all agree that I should definitely discontinue mesalamine but they aren't sure about the Crohn's Diagnosis.
Here is how I was diagnosed:
A doctor when I was about 16 did a colonoscopy based solely on the fact that I had 2 weeks of diarhea and green stools. The colonoscopy revealed apthous ulcers (my doctors say this is not diagnostic of Crohn's?), but little to no inflammation of the intestines. She did not diagnose me with Crohn's, but said she was a little concerned. My symptoms disappeared on their own, and I continued on my merry way.
Two years later, I started having Diarhea and rectal bleeding. I went to a new doctor and he performed a prometheus test. The test came back positive for Crohn's, but I must say that even I think this test is BS. I have sense been retested and while it still says I have Crohn's, my antibody results have "flipped". I was, but no longer am, ASCA positive. However, I am now OmpC and CBir1 positive, when I wasn't previously :) what the hell?
Anyway, he diagnosed me with Crohns, but he qualified it by saying it was the most mild case he had ever diagnosed. He did not put me on medication for it.
Anyway, the diarhea went away on its own (and by the way, this is not horrible diarhea, just like 3 times a day, nothing like my "flares").
But then one day I came home from school, I had a fever, and was bleeding from my anus. I DID NOT have diarrhea when this occurred.
I went to the doctor and he prescribed me Colazal. I had previously had a bad reaction to asacol. In retrospect, this should have been a pretty big warning light :) After I started taking Colazal, I had Diarhea until college started.
I still do have occasional bleeding. My colonoscopies have been relatively clean, but not perfect. I do have a chronic case of internal hemroids... they have been on every scope.
Is it possible that my bleeding and fever that day were caused by infected hemroids????
Anyway guys, I don't know what to believe at this point but I would love some input!
P.S. Based on my reactions to different mesalamine formulations, I think I have come up with a list of their respective potentcies :)
Lialda (Most, immediately caused a severe reaction)
Asacol (same here)
Pentasa (When I started taking this one, I had continuous abdominal pain)
Colazal (Least, this is the one I was able to take chronically)