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Have a question and I think I know the answer. I'm a 66 year old male. I was Dx with UC in 1994 and had colon removed and temp ileostomy. J-pouch surgery in 1995. J-pouch performed fairly well until April 2016 then a major blockage due to inflammation. Had emergency surgery and now back to loop ileostomy and Dx now is Crohn's. Of course now on Humira. Flexible sigmoid and MRI's now show inflammation is gone and looks as though Crohn's is in remission. Have fistula in pouch that has healed. Doctor says we need to wait at least another 6 months before even considering a reversal and I'm fine with that decision. But, this loop ileostomy is hard to get a seal around to stop waste from going into the distal opening and leaking from rectum. So, I'm thinking of having an end ileostomy and leaving the j-pouch just in case I can get reversed and maybe the possibility of new drugs that may cure or control Crohn's even more effectively than what's out there now. Be just my luck to have everything removed and then the magic bullet hits the market. What you think, have the end ileostomy and save the j-pouch and eventually get reversed or go ahead and have everything removed and be happy with an ileostomy?

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If your j pouch and anal sphincter are in good condition and you were satisfied with your pouch before problems developed, I would opt to keep it.  As regards your temporary ileo, I suggest you be seen by a good ostomy care nurse who could get you set up with supplies and techniques that will make having it manageable until takedown.  You may also wish to check out the UOAA Message board for suggestions that could resolve your problem.  I would consider an end  ileo at this time as a last resort.

If you can hang with the loop ileostomy for now, it is better than getting an end ileostomy, unless you plan to stick with it in the long term. The readon is that there is a school of thought that surgery can trigger Crohn's flares. So, if you are doing well, Crohn's-wise, it is best to leave sleeping dogs lie, so to speak. 

Have you tried a convex system for your loop ostomy? They ten to be more flush and difficult to get a good seal. Also, Eakins seals are talked about as a good option for the problem ostomy.

Jan

i had the same problem before take down . After i had  a loop ileostomy , i started getting abdominal cramping so severe that my stoma would just flush with the skin or would sink in . i had to go to ER every few days and for sunken stoma and my pouch would get functional . As i was loosing weight again , my surgeon decided to take down my ileostomy .At the time of surgery they figured that i had lot of adhesions which was the cause of cramping . Not sure if thats what causing leaks in your case .

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