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Crohn's Disease Forum » Surgery » Stoma Subforum » Long-term remission with ileostomy


08-25-2015, 03:01 PM   #1
Nosebag
 
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Long-term remission with ileostomy

Hi
I really want to ask this question because I know a person who had an ileostomy and basically no longer gas Crohns and takes no medication except imodium. Call this a cure call it long-term remission but I have recently got my ileostomy back and during my previous time with it I required no anti inflammatory medication. I just want to know are there others in this forum who have chosen an ostomy and remained med free long-term because medication has failed me severely.

Thank you
08-25-2015, 03:05 PM   #2
VeganOstomy
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Where is your Crohn's isolated to? Mine was entirely in the colon/rectum and having my colon removed put me into remission -there are no guarantees it'll last forever, since Crohn's can travel, but it's helped me tremendously where medication failed.

Good luck with whatever you choose.

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08-25-2015, 03:25 PM   #3
Nosebag
 
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Hi
Thanks Vegan I have colonic and ileal disease but like before the disease has been removed from my small intestine by resection. I know there is no guarantees but its just because I was so well before I really hopes that is the case again. For once I was able to live and eat like everyone else who hasn't got this wretched disease.
08-25-2015, 03:28 PM   #4
VeganOstomy
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Hi
Thanks Vegan I have colonic and ileal disease but like before the disease has been removed from my small intestine by resection. I know there is no guarantees but its just because I was so well before I really hopes that is the case again. For once I was able to live and eat like everyone else who hasn't got this wretched disease.
Having small bowel or ileal involvement certainly do complicate the matter, but I think a surgeon might be able to give you realistic expectations for long-term remission goals.

Barring surgery, have you been in any drug trials, perhaps for new drugs that aren't yet available on the market?
08-25-2015, 07:42 PM   #5
2thFairy
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I had (have) ulcerative colitis, so for me having a colectomy and now ileostomy has me in remission with no meds.
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08-26-2015, 09:13 AM   #6
highlandsrock
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I fit that description. Ileostomy October 2010, reversal June 2011 and in clinical remission ever since. I would never claim not to have Crohn's though. I do now have BAM which can give the same problem as Crohn's ie. dashing off to the bathroom. I take 2 Loperamide capsules a day to control it.
08-27-2015, 09:35 AM   #7
Susan2
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I had a total proctocolectomy and ileostomy in 2000 and haven't been on any medication for Crohn's since tapering off prednisolone after the operation. I sometimes have diarrhoea but control it with Loperamide/Imodium.

I wouldn't call the Crohn's "cured" but certainly "in long term remission".
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
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08-29-2015, 09:17 AM   #8
Nosebag
 
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Hi

Thanks everyone for your responses my large intestine is still in place but I have an end ileostomy. Even though my large intestine isn't near my small does it increase my chances of my disease returning because my large intestine hasn't been removed.
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