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Reply to "Low quality of life with pouch... not sure what to do"

I'm rotating Augmenten for 2 weeks then Xifaxan for 2 weeks then Augmenten etc.

I'm also using Canasa, VSL#3DS and s.boulardii. For various other health reasons I can't take Cipro or Flagyl.

 

There are many here that do well taking antibiotics all the time.  I'm at 8 months of rotating them and getting worse. I've been wrestling with my j-pouch for  4.5+ years and it's time to make some tough decisions   Dr. Loftus, my GI at Mayo, has me scheduled for a pouchoscopy in a few weeks.  We know that the balloon dilation done in February didn't work.  He is going to determine if I need the dilation done under anesthesia for the efferent limb blockage. I'm going to discuss going to a permanent ileostomy with him and the surgeon.    

 

I have many other health problems so have no quality of life. I'm eating correctly for all of my health problems.  Pouring medications into my body is not working.  I can't make plans to do anything or go anywhere.

 

I'm turning 60 this year and don't have another 5 years to devote to a j-pouch that isn't working well.  Please don't tell me to go to CC as I am at Mayo's and my GI is the director of the IBD Clinic there.  He is a wonderful doctor. I didn't ask for the upcoming surgical consultation, he scheduled it.  He had one scheduled this time last year but I had a few months of doing better so cancelled it. 

 

I don't think several months is enough time to go back to an ileostomy. I was told it would probably take a year or more to fully recover from the surgeries.  I don't think it is time to quit using your j-pouch but think that I should have quit trying at the end of 3 years.

 

We are all different. 

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