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Reply to "From temp ileostomy to permanent (need advice)"

From what you have posted, I am assuming that your latest surgery left your j pouch in place and created a temporary ileostomy.  Since it appears that you have made reasonable attempts to get your j pouch to “behave”, removing it at this point is a reasonable decision.  I cannot personally compare a temporary with a permanent ileostomy since I only had a temporary over 35 years ago as part of my j pouch surgery. I was so glad to see it gone.  A malignant polyp and recurrent high grade dysplasia made it necessary to have my j pouch removed 5 years ago.  I very strongly did not want an ileostomy with its associated issues and was fortunate to have knowledge of two alternative procedures that do not require having an external bag.  They are the Koch pouch and the very similar BCIR.  I opted for the BCIR and have had excellent results.

Since many doctors have limited or no knowledge of these options, they routinely only recommend a permanent ileostomy.  I do not mean to discourage getting an ileostomy since many people have had satisfactory results with them.  You may wish to research both of the alternatives on the internet.  My BCIR surgery was performed by Dr. Ernest Rehnke in St. Petersburg, FL.  They have a very informative website at www.bcir.com.  In addition, they are having seminars at Hebron, KY on 6/9/18 and Greensboro, NC on 7/28/18 where you can meet Dr. Rehnke and some people who have BCIR’s.

My surgery took longer than normal due to the presence of dense adhesions, but it was fully successful and I was able to resume many of the activities I enjoy within a month after returning home.  I now can eat almost anything I want, get a full night’s sleep without interruption, have no leakage of gas or stool’ and empty the pouch at my convenience 3-5 times a day with a small plastic catheter.  Please feel free to send me a PM if you have any questions or would like to talk with me about my experience.

Bill

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