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Reply to "JPouch stricture, surgeon recommending illeostomy as ONLY solution"

Oh sorry, I did not know you were with the NHS, so that definitely makes a difference in regard to options. I know that second opinions are possible, but wait times can be intolerable. Plus, once some doctor high up the rankings has made a determination, it is difficult to find someone to enter a differing opinion. That can happen in the US too. 

Also, there is the cost vs. benefit ratio. It is neither a bad or good thing, just part of the consideration. If biologics are not showing a benefit, they are less likely to invest limited funding to try other very expensive options. End ileostomy is a known factor and most people function quite well with one. If your past ileostomies were loop (diverting) ileostomies, they really do not compare in regard to day to day function.

The main thing though is being able to find someone who has the time to listen to your concerns, and explain fully what their assessment is. It is possible that end ileostomy is your best option, but it does not sound like you have been given all the information you need to accept it. You’d think it was not too much to ask to be part of the decision making process.

Jan

Last edited by Jan Dollar
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