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Any thoughts?

I'm going to explain my symptoms to see if anyone has any experience with this and knows if maybe there is something else going on.

I was diagnosed with crohn's disease last year but have had digestion problems for almost 6 years now. I remember at the beginning it started as I would get diarrhea pains after eating foods but there wasn't a pattern to which ones. I went to the doctor a bunch and after a few years I finally got to see a GI who took a barium test to see what was going on. It showed my colon full of stool and she put me on a few different laxatives and said I may have to take them for the rest of my life and left it at that. So I kept getting bloated and then taking laxatives on the weekends so that I wouldn't have diarrhea during the week. After a while the laxatives didn't give me diarrhea anymore which kept me bloated and even if I had a bowel movement I felt full still. Also, if I did get diarrhea my insides felt sore. Then last year I started getting really bad pains above my belly button before I needed to diarrhea and after eating. I was treated for an ulcer which I didn't have and had another barium test showing that there was narrowing in my small intestine. I was referred to another GI and she did a colonoscopy showing that I crohns in my ileum. Also a CT scan was done showing a fistula and an abscess. After lots of antibiotics and prednisone I was still having symptoms. While inflammed I have more diarrhea but not as bad as a lot of crohns people I have read about. Also when the inflammation is gone I have this bloated and then diarrhea cycle I go through. Right now I'm having a flare and I'm on 100mg imuran and my humira dosage is going up from one shot every two weeks to one every week. Another weird thing that happens and was occurring before I was diagnosed was that I would get these horrible gnawing pains above my navel that were worse than any pain I had and they would keep me up at night and ease with this gurgling sound. I have had that happen around 5 times and it happened recently and sometimes I vomit. Last week I went to the hospital with stabbing pains below my navel and had a ct scan which showed active inflammation again and also showed my colon was full of stool again.

Summary:
-before diagnosis feeling of fullness that ends with diarrhea that doesn't make me feel "finished"
-used to have gnawing in upper abdomen after eating and before diarrhea
-have more diarrhea during active inflammation
-still get bloated and full feeling that ends with diarrhea. even if I have a regular BM I never feel finished
-right now I'm having a "flare" but I'm mostly bloated and full with bouts of diarrhea

I'm wondering if I have something separate to the crohn's disease, like a lazy bowel or something because that's what my other GI thought. If anyone has any advice or information that'd be awesome.
 
Everything you outlined sounds just like what I had to deal with, with my Crohn's.

So far, I have no other diagnosis related to the GI tract. I did however have surgery to remove diseased bowel just 4 months ago.

The narrowing of the intestine can cause the gurgling, and the trouble emptying the bowel. At the time I had surgery, my bowels were VERY impacted with stool. I was even reconnected with about 20" still impacted. I would add that I had a 5 day prep before surgery, and that included NO solid food, yet I still had a bunch of solid waste!

I hope this is helpful, at least for the insight. :)
 
I wonder why this happens.. it seems like nothing makes sense with this disease. Thank you for telling me your experience, I hope the surgery worked for you. Did it help with the constipation? My doctor said if the new meds don't keep the inflammation away then she would think about getting me to have surgery too, but I'm convinced that wouldn't help the constipation which seems to be constant even when I don't have inflammation.
 

David

Co-Founder
Location
Naples, Florida
Hi there kmole and welcome to the community! Here's my guess as to what is going on, at least in part:

1. As you have a fistula, that likely means that you have a stricture as that's where fistulae usually form. A stricture is a narrowing of the intestine. Fistula usually form proximal (before) the stricture, in part due to the pressure build up.

2. The cramping pain is possibly partial obstructions as food has trouble getting past this narrowing.

3. Strictures can lead to decreased intestinal motility and one of the common problems associated with that is small intestine bacterial overgrowth which can lead to a whole host of symptoms as well.

If the roles were reversed I would want:

A. For them to evaluate the extent of my stricturing and whether it was mostly scar tissue which the medication wouldn't solve.

B. Check for C.diff

C. Put me on total enteral nutrition for awhile to help get things calmed down in conjunction with my medications.

D. I would then slowly transition to the paleo diet.

E. To be evaluated for every vitamin and mineral deficiency under the sun.

Just me of course and what is best for everyone is a little different. But that may give you a few things to research and discuss with your doctor if they sound interesting to you.

Again, welcome!
 
I thought it was partial blockages too but no one was confirming anything when I mentioned it. I will make sure I push them to investigate further! Also I've been looking into the Paleo diet but I'm a vegetarian so it would be hard. Thanks for your reply!
 
Yes, surgery has helped tremendously with both the D, and the constipation. It has also, at least for the moment, eliminated the regularly occurring obstructions.


IMO, sometimes Dr.'s are afraid to advocate for surgery. I had a GI, whom I was begging for surgery, all the while he was telling me to just let the medication do what it's supposed to. Well, this made my life a living hell! I was regularly bedridden, too sick to even feed my children, or myself! The pain was so bad I seriously considered ending my life, on more than one occasion. Nevermind the regular obstructions, D, and bleeding..

If you think it may help, go see a surgeon. A colorectal surgeon. They will be more proactive about surgery, and many won't do a surgery if they feel you don't need it.

At the least, a second opinion from a surgeon would help you with your decisions.
 
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