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Small bowel Crohn's vs colitis

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Crohn's Disease
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RobLee
Veteran Member
Joined : Apr 2017
Posts : 1488
Posted 3/19/2020 7:08 AM (GMT -8)
Has anyone been informed that there is a difference between small bowel Crohn's and large bowel Crohn's, specifically regarding dietary recommendations?

Last week while I was waiting to see my gastro to schedule my next routine endo, I was watching a video in the waiting room. The topic was the difference between what to avoid eating if you have small bowel Crohn's or large bowel Crohn's. The small bowel Crohn's sounded just like me. I was called back before the rest of the video.

I have never been diagnosed with Crohn's, but have Barrett's esophagus plus radiation colitis and now sclerosing mesenteritis, for which I use lansoprazole and cholestyramine. While discussing the BE and RC with my gastro, he perked up when I mentioned what I can and can't eat, and when I have 'episodes' and what can I do about it.

Most doctors are unfamiliar with SM and just say they "have to read up on it". But the low residue diet which I must follow is very much like what is recommended for small bowel Crohn's. I developed problems with frequent diarrhea after my second small bowel resection, though it was supposed to have improved with time, as was the radiation colitis.

The sclerosing mesenteritis (aka mesenteric lipodystrophy or panniculitis) is much like recurrent SBO's. I've asked about this in other IBD groups and no one has ever responded. I realize it's a lot of info to 'digest' and most others don't have this combination of conditions... but really all I'm asking is if anyone has had to deal with recurrent diarrhea due to any small bowel condition so I maybe don't feel so all alone.
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ambling
Veteran Member
Joined : Feb 2011
Posts : 1075
Posted 3/19/2020 9:49 AM (GMT -8)
Frequent diarrhea following small bowel resection is very common. I see you take cholestyramine, to bind the bile salts. That does help some. Apparently things can improve over time, but sometimes it doesn't.
It's a very annoying side effect of small bowel disease, and resections.
Often the Crohns returns to the site of anastomosis, and that further complicates the situation.

It's a charming thing many of us deal with!

take care
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19278
Posted 3/20/2020 6:10 AM (GMT -8)
RobLee, I had severe uncontrollable diarrhea after a small bowel resection for crohns. This went on for years every day! Even drinking water kicked it in. I started getting afraid of eating & drinking anything which was not healthy at all. I was the bile salts medications, plus Lomotil which gave very little relief. I have a great gi dr & he referred me to UTSW for a consult to the first dr that wrote a book on diarrhea. This guy did not have an explanation either. I literally became housebound. Now, things has calmed down compared to then. However, I still have problems with it. There are so many foods that I avoid for sure. The crazy part of it is, I can eat something one day & a week later eat the same thing & be stuck in the bathroom for a couple of days.

If you feel the medication is not giving you a lot of benefit, perhaps discuss Welchol with your dr. A lot of crohns people here had better luck with it.

Take care.
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RobLee
Veteran Member
Joined : Apr 2017
Posts : 1488
Posted 3/20/2020 6:20 AM (GMT -8)
Thank you, ambling! Yes, I realize that the increased occurrence of diarrhea was caused by the small bowel resection(s). The last one was 18 months ago. The first 6-8 months afterwards were hell, until my gastro Rx'd the Questran. The problem with that is timing intake with meals, supplements and other meds, as it blocks absorption.

The radiation colitis occurred a year before the SBR and was Dx'd midway between that treatment and the surgery. Basically I've had to discover on my own what I can and can't eat. Thank goodness for Dr Google, as my doctors have been little to no help.

Sclerosing mesenteritis is a rare diagnosis, so I've sought help from Crohn's/UC groups. There is a small SM group on FB but most there have been Dx'd from CT or biopsy and are treated with steroids. My case seems to be significantly different from most others.

Most treatments commonly used for Crohn's and UC do not apply here, but the dietary restrictions are shockingly similar. And I get fed up with those who recommend fiber or vegan, as that would probably be the worst things I could do. Getting tired of grilled chicken breast with white rice, and hoping maybe some others could make some suggestions. Again, so I don't feel so alone in this.
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RobLee
Veteran Member
Joined : Apr 2017
Posts : 1488
Posted 3/20/2020 6:39 AM (GMT -8)
Thanks Straydog. Mine also occurs in 'flares' of a week or two, even though I maintain a strict diet and don't dare eat fried foods or too many fruits and veggies.

The Welchol sounds a lot like Questran, which I get it free from the VA, so it's probably not worth changing as I do not have diabetes or high cholesterol. There is supposedly a specialist at Mayo but my family (and myself) have so much going on medically that I couldn't make a trip there as long as I am able to control with diet. But I've had to give up a LOT of favorite foods.
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HabsHockeyFan
Veteran Member
Joined : Jan 2006
Posts : 3240
Posted 3/20/2020 8:46 AM (GMT -8)
Hi RobLee. Pretty much the same as what Straydog said. I had a resection in 1990. I had total C before then. Since the resection I have always had D, sometimes worse than others. I also had my gallbladder out and that aggravated things further. Yes, watching what i eat helps...but sometimes even a plain cracker can kick things in. If you don't think the cholestyramine is helping as much as it should, I can recommend a couple of things. My husband calls cholestyramine the only thing that gave us our lives back!
My doctor originally said I could take two packets a day, one in morning +1 at night. I don't take that much, but maybe you should ask if that is an option for you.
My GI said that he recommends taking it at night if you take it only once a day. I never got a real answer if that was because they think then you can sleep through night or if it was anatomical. I take mine in the moring as that gives me a full day of relief.
I vary my dosage (I recommend you clear that with your GI!). If I am in a stricture/flare issue and getting bound up, I take less. If I am having a really bad few days of D, then I take more. Varying it seems to help balance things.
Are you taking a "lite" version> I take a light version and it does have some artificial sweetener which bothers some folks...maybe you could switch away from this if you are.
Hope this helps...Take Care
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RobLee
Veteran Member
Joined : Apr 2017
Posts : 1488
Posted 3/20/2020 7:50 PM (GMT -8)
Yes, thanks, I take the light version. about a year now, and it really does help. And once a day with evening meal works best. It has in fact been a godsend. But I don't want to use it every day as it does interfere with absorption of nutrients and other meds. Generally I only need it when we eat out, but sometimes even my wife's home cooking can do it to me. Thanks for the input and hope you are doing well.
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