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Crohn's or not Crohn's...anyone have a similar experience?

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Crohn's Disease
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Posted 5/19/2018 1:14 PM (GMT 0)
Hello!
My name is Max. I'm a healthy 42 yo. Non smoker, exercise, not overweight. Lived with IBS type symptoms for many years (since a Cryptosporidium infection about 10 yrs ago). Recently my symptoms changed after what I thought was another intestinal infection. about a month ago I had a day of fever and diarrhea and cramps. Felt better by the evening but then 3 days later had a day of terrible lower abdominal cramps and the urge to have a BM every 30 minutes. This lasted only for a few hours but the lower abdominal stomach cramps have persisted and I've developed a lot of churning and gurgling. My symptoms (cramps and churning) even keep me up at night (I think the lack of sleep is the worst part of this whole thing!). Went to see my GI who did stool cultures and CBC which were negative. Then had a colonoscopy last week that the GI said showed some "erosions" in my colon and terminal ileum but he didn't think it looked like Crohn's. The biopsy only muddied the waters as it showed some "cryptitis and focal inflammation" but no "destruction of the architecture or chronic findings consistent with Crohn's.". Their impression was "focal, mildly active colitis and ileitis; likely post infectious but early Crohn's cannot be ruled out". My GI couldn't say for sure that it's not Crohn's but seems to think it's more likely a self limited inflammatory / immune reaction to some type of infection. They're going to give me another month or two to see how it progresses. I should note that I never had any bloody diarrhea and my stools have returned to soft and formed (albeit somewhat mushy).
Has anyone had a similar experience? I appreciate any insight and comments.
Thanks!
Max
Posted 5/19/2018 1:34 PM (GMT 0)
Hi Max,
Sorry you are going through all of this! My thought is that if it is Crohn's you will know it eventually. There are a lot of bacterial infections and imbalances that don't show up on stool cultures. It might be a good idea for your doc to try treating you with antibiotics to see if it will clear things up for you. If that doesn't work it might be helpful if your doc is willing to try a tapering dose of Prednisone, just to see if that will settle things down. Post infectious irritable bowel is a real thing. Even after antibiotics it can take a long time for the IBS symptoms to settle down


I have Crohn's disease that we believe has been in remission since bowel resection surgery in 2014. Nevertheless, I have endless problems with bacterial infections and SIBO (small intestine bacterial overgrowth) Sometimes things show up on stool cultures and sometimes it doesn't. I do understand the lack of sleep from bowel issues! Currently we are trying one week of Flagyl a month and three weeks off. We are going to do this for three months to see if we can re-set the SIBO issues. Probiotics have never helped me, but do seem to help others.

The current belief is that Crohn's is caused by both genetic and environmental factors and a bad bowel infection seems to trigger Crohn's for people susceptible to it. This is a very frustrating disease, and my guess is that the inflammation and bowel damage from Crohn's has different causes for different people, which makes it even harder to treat.

My best advice is to try to find a GI doctor that will keep working with you to try to help you control symptoms and re-test if you are not getting better.
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