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Hi Folks,

I need some advice.  I've had a j-pouch for years, but things are starting to deteriorate.

I'm having frequent pouchitus and am taking Cipro and Tinidazole together.  The medicine helps, but pouchitis returns.

I went to Cleveland Clinic for an exam and after many discussions have decided to have an ileostomy.  The surgeon told me that this surgery is pretty standard, but the "second surgery" to remove the pouch is much more extensive. The doctors won't know whether I will need the second surgery or not.  

Is the second surgery a necessity?  What determines the need for the second surgery?

I know that the Cleveland Clinic can do the second surgery, but unfortunately my insurance will not fully cover it because it is out of their coverage district.  

I'm thinking of having the ileostomy at my home hospital and if the second surgery is necessary, having it done at the Cleveland Clinic.  Any advice that you can give me would be great!

Thanks.

Last edited by buttout
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Hi buttout,

 

I’m sorry to hear about the problems you are having with your j-pouch.  I had mine for 30 years before I developed high grade dysplasia that made pouch removal necessary.  You will want to sure of your decision to remove your pouch since there is no going back once it’s out.    In my case, I strongly did not want an end ileostomy with its associated issues and was fortunate to find a surgeon who would give me a continent ileostomy.  I now have a BCIR, but there is a similar procedure known as the k pouch that is done by more surgeons.  Most people and many doctors do not know that these procedures exist.

 

It is also my understanding that j-pouch removal is a complex surgery, but that will vary from person-to-person.  My surgery went well, but took longer due to the presence of adhesions around the pouch.  I had a full and uneventful recovery and now have had a very good quality of life and appreciate not having a bag.  Any major surgery has risks of complications, even an ileostomy.  As far as insurance coverage is concerned, you can petition your insurance company to give out of network coverage provide you can furnish medical documentation that supports that there is not an in-network provider available for the recommended procedure.  Please feel free to send me a PM (“Start a Dialog&rdquo if you would like to contact me for more information.

Bill

Starting a dialog on this new forum platform is new for me, but I believe this is how to do it:

On your Profile page, click on "Create Dialog" button.  This takes you to a new screen.

Enter my ID in "Dialog Participants" space-left side of screen.

Type entry in "Subject" box.

Type your message in "Type Dialog " box.

Click on "Start Dialog Now" button to transmit your post.

 

I look forward to addressing your questions.

Up at the top right os this page there is a box labled "Dialogs." Click on it and you'll get to a page of the dialogs you are participating in. You can also set your notification settings so that you get an email if there is a new comment in your dialogs. To do that, click on "Manage" in the menu bar and choose your account. Choose "Notifications" from the list on the left.

 

Jan 

Last edited by Jan Dollar

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