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Crohn's Disease
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Posted 4/21/2012 2:44 AM (GMT 0)
Hi Everyone,

I was wondering, can resting the gut long-term affect test results for Crohn's? I have been on TPN for 5 years now, and I have not eaten much during that time.

I know that the villous atrophy which occurs with Celiac Disease is not present when one adheres to a gluten-free diet or doesn't eat for a long period of time; thus making a diagnosis via biopsy very difficult to make. Is it the same with Crohn's regarding the inflammation?

Do I need to eat before I am tested to trigger a more severe inflammatory response, or would the inflammation be present anyway? If anyone could shed some insight, I would greatly appreciate it. Thanks so much!

-Brian
Posted 4/21/2012 4:18 AM (GMT 0)
I think TPN is used to induce remission, so if you are feeling well and you're on TPN, then I'd say you are in remission. Is your question, then, can biopsy show evidence of Crohn's disease if you're in remission? And I think the answer would be maybe.

But it's not just eating that might throw you into a flare. I guess it might. But it might not.
Posted 4/21/2012 5:51 AM (GMT 0)
I'm not really feeling well, as I still have a lot of problems, but I definitely feel better than I did prior to the TPN. I was wasting away, down to 105 pounds at 5'10". I would say as of right now, I'm a lot more "stable" than I was. But I'm still a mess. Constant problems with maintaining proper hydration and electrolyte levels, severe bloating & gas, rectal bleeding, skin tag, joint pain, diarrhea, rashes on my fingers, anemia and vitamin D deficiency, and some abdominal pain.

I truly believe that I have Crohn's, and not "Post-Infectious IBS" as the doctors have said. I don't fit the Rome III Criteria for IBS at all, and I have too many "Red Flag" symptoms.

I had a colonoscopy/endoscopy years ago, which was negative for IBD. That was before the perianal problems though. I've read that Crohn's & UC are normally diagnosed by colonoscopy and endoscopy, but is it possible that they could be missing something? I have never had a capsule endoscopy, which is something my doctors have recommended to check for Crohn's.

I'm going to the Cleveland Clinic in June, and I want to be sure that if I have Crohn's, it will be active enough for the doctors to find it. So many foods cause problems for me, so I was thinking I could induce a flare if I forced myself to eat for a while before undergoing any tests. Do you think this might help? I'm so desperate to find out what is really going on so that I can get on a path to wellness. Thanks for your help.

Brian
Posted 4/21/2012 12:28 PM (GMT 0)
Given the symptoms you describe I would say you are already suffering enough and I would not counsel you to try and make things worse!

There are several folks here who have been diagnosed by pillcam and not colonoscopy. Sounds like a good idea!
Posted 4/21/2012 10:14 PM (GMT 0)
It's possible to miss Crohn's with the standard tests, yes. It can be a hard disease to pin down, unfortunately. And a negative colonoscopy does not mean the absence of Crohn's forever more, something that certain doctors seem inclined to think. Even folks with established Crohn's disease sometimes have negative colonoscopies.

I don't think it would be a good idea to try to induce a flare, though, particularly as you are still in bad shape. Enteral nutrition works best for the small bowel, not so well for the colon, and worst of all for perianal disease - so I believe. Basically, the lower down the disease is, the less likely enteral nutrition is to heal it. Although with you being so badly underweight, it's hard to see how much healing could have gone on anywhere :-/ I hope you weigh more than 105 pounds now!

Anyhow, agreed that the pillcam is a good idea.
Posted 4/22/2012 4:49 AM (GMT 0)
Thanks for the replies. I really appreciate hearing from people who have some experience with Crohn's, as I am not very well-versed in all of its manifestations.

I am much healthier now than I was prior to TPN. I now weigh 170 pounds. It was so helpful in getting me back to a healthy weight.

The question that doctors have posed in my case is whether or not I have Crohn's in the small bowel, since my colonoscopy showed no evidence of it in the colon. However, the colonoscopy was 5 years ago, so it is possible that things could have changed. So if TPN works well for the small bowel, I might not show any inflammation with the Capsule Endoscopy. But if you think it's a bad idea to try to trigger a flare, I probably should heed your advice.

I was recently at the Mayo Clinic, trying to get a diagnosis. I had a stool test, CT Enterography, gastric emptying study, fructose malabsorption test, and blood work. According to the doctor, all of my test results were normal, with the exception of anemia and Vitamin D deficiency. I am still scheduled to have an endoscopy & colonoscopy, and a capsule endoscopy.

I am fairly certain that I have Crohn's, and I just want it to show up so that I can finally get some treatment for this 8-year long "mystery GI ailment". I think if I am to be diagnosed with Crohn's, the key will be the perianal issues which have popped up in the last 2 years. The perianal issues were not present when I had my colonoscopy 5 years ago.

Is it difficult to diagnose Crohn's based on perianal manifestations if nothing shows up in the colon or small bowel? Thanks so much for your help and guidance. I really appreciate it!

Brian
Posted 4/22/2012 5:51 AM (GMT 0)
There are several folks here who have been diagnosed by pillcam and not colonoscopy. Sounds like a good idea!

Post Edited By Moderator (tortoise11) : 4/22/2012 12:13:21 AM (GMT-6)

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