Mayo Clinic Rochester

An update to a previous post. We are at Mayo Clinic Rochester. So impressed! After 20 years with a j-pouch (10 relatively good years, 10 rough years), my beloved husband is going to get some solid advice here. Is the pouch shot? Stricture at the anastamosis and at least 2 fistulas. Will it need to be removed and have a permanent ileostomy? Or can Mayo save it? Those are the questions we hope and pray to get answers to this week. We really appreciate prayers and positive vibes! Will post updates soon. Thank you all!

Original Post

I went to Mayo at Rochester for a second opinion on my J pouch 4 years ago and they confirmed that my pouch would have to go.  The surgeon I saw said they would only give me an end ileostomy, which I strongly did not want for its associated issues.  Fortunately, I was able to get a BCIR in St. Petersburg, FL, and it has worked out very well for me.  Google BCIR or K pouch (a similar procedure) that does not require an external bag.  Best of luck.

Your surgeon at Mayo should be able to determine how much small intestine is left and whether a third pouch can be constructed.  A definite diagnosis of Crohns  may make construction of a j pouch or a BCIR unadvisable.  In some cases, the current j pouch can be re-used to make a BCIR.  Please send me a PM if your husband might be considering a BCIR as a option to an ileostomy and would like more information about it.

Got some answers after three days of scope, MRI, CT scan, and labs. He will have the old jpouch with stricture at anastamosis and fistulas removed and will have a permanent end ileostomy. He is concerned about recovery. Any positive words of encouragement are appreciated. 

Sorry about the unwelcome news. I suppose you could still get a second opinion regarding a continent ileostomy. 

But whatever you decide, just know that nearly everyone who has had to revert to an end ileostomy has adapted well and had a good quality of life. Actually, the satisfaction rates of end ileostomy and j-pouch are very similar. It is just hard to wrap your head around it at first. 

Jan

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