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I have a hell of a story for you guys: Do I have Crohn's?

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Crohn's Disease
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Posted 8/25/2007 10:55 PM (GMT 0)
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.

Praise god!

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!

Mark

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)
Posted 8/26/2007 12:21 AM (GMT 0)
Mark,
That is some story! I really find it awful that after having a bad reaction to Asacol, that any doctor would prescribe Pentasa or Colazal. Since that part of the mystery is solved, I'll address your queston about the Crohn's diagnosis.

First, have any of the docs performing your colonoscopies ever taken ANY BIOPSIES? If so, what did the pathology reports say? If you do not have the pathology reports, get them! I would hope that the first doc that saw the aphthous ulcers took some biopsies in the ulcered area. Biopsies can really help in the diagnostic puzzle. Just because a colon does not look inflamed does not rule out microscopic inflammation.

As to the Prometheus lab tests - sounds to me like you had first the IBD First Step test, then the IBD Serology 7 test. There were new markers uncovered that led to Prometheus to expand the number of markers they check for. The Anti-CBir1 is a marker I know was not on the First Step test. The PPV [positive predictive value] of the Serology 7 test for CD is 96%. So yes, you certainly could fall into the 4%. That is why biopsies and other clinical signs are used to verify the disease.

Your bleeding episodes most certainly could be from internal hemorrhoids. Straining, unusually large stools, and heavy lifting can all cause internal hemorrhoids to bleed. And and irritated hemorrhoid can cause some significant blood in the bowl. If a hemorrhoid were to become infected, I doubt that it would resolve on its own. Perhaps it was a coincidence that you had rectal bleeding and a fever on the same day. Maybe you had picked up a virus or something else that caused you to have a fever. Of course, the two things could be related.

Do you have CD? Really impossible to say without some biopsy reports. If they took biopsies during every colonoscopy and all of those were normal intestinal samples, and you had a capsule endoscopy that showed no evidence of CD, then I might go along with the Serology 7 being incorrect.
Posted 8/26/2007 12:40 AM (GMT 0)
I don't have any great answers. I'm fairly new to all of this. But as I was reading I was thinking maybe the blood was from Hemis. I don't know but I think it would be great to find out that I was no longer a Crohnie! I hope that you get the answers you need, but maybe it was just the hemis causing the bleeding.....
Heather
Posted 8/26/2007 1:39 AM (GMT 0)
I stopped Asacol back in the spring after 11 years of continuous use. I was having problems with it that all pointed to CD problems. I felt better after a few weeks, but since then I've stopped feeling so well. My point being that mesalamine can surely cause problems and you weren't as slow to figure it out as me!

I hope that time shows you don't have Crohn's since I don't wish this on my worst enemy. I most definitely have it, so I don't have that hope, but stopping an offending medication is a good thing either way.
Posted 8/26/2007 5:04 AM (GMT 0)
Crap. I don't really know how optomistic I can be now after reading about the Serology 7. If it really is that accurate, then I think I should just go ahead and consider myself a Crohnie. I just can't believe that the test could be that accurate... most doctors that I have visited, well respected ones too, blow it off as inaccurate. I blew it off b/c my results fluctuated from the First Step Test to the Serology 7 test. True, the first step did not have the CBir1 antibody so I can't comment on that, but every where else my results flipped. I was ASCA positive and OmpC negative, and now I am ASCA negative and OmpC positive!!

I have had biopsies on all of my colonoscopies. My most recent one did indicate one area marked as Focal Active Colitis, Mild; however, the doctors thought that it was so mild that it might have been caused by the prep.

Wow. Well I had hope for a little while, but better to be realistic than in denial :) Thank for your input guys!
Posted 8/26/2007 4:57 PM (GMT 0)
Hey, styx,

After my surgery, I started having crohn's symptoms within a few days. The actual crohn's inflamed area, wasn't even detected til months later, probably because it was just starting and I guess you could say it could have been microscopic. The other thing is that my bloodwork, never reveals much inflammation if any. There are also many ppl here who have crohn's, CD symptoms, but the doctors haven't found the inflammation, although we have seen the inflammation with xrays and scopes.

Of course, you might not have crohns. I hope you don't. But from your own testimony, you've had some kind of bowel trouble that requires you to keep it in check, sometimes with medical intervention. Have you tried going on a good strong probiotic? It might be enough to fix you up, considering your mild symptoms of late.
Posted 8/26/2007 5:17 PM (GMT 0)
Well this is an interesting case, clearly something needs to be monitered. But I would defiantely have a pill cam done and colonscopy done just to make sure.
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