Aaaaaarrrrggghhhhh!

The pouch is driving me nuts. I have had it for 14 years now and, for the most part, any issues have been controlled. I find myself relying more than I would like on cortisone suppositories (developed allergy to canasa) and doubling up on the Cipro a lot lately. The past few days, I have had bouts of living in the bathroom and not much success at it makes it even more frustrating.  Cortifoam is backordered and has been for at least 2 months. Sometimes I just want to scream! I realize this is still better than the bag, but it sure is slowly getting more complicated. I see my doc on the 30th and hope to get some advice to see me through his retirement. He is so awesome, and I fear I will not find someone I can connect with. I just want to cry.

Original Post

KTA,sorry you are in distress.I am going to through towel in on my lousy pouch in misery since 07/2012 going back to the bag.I sometimes wish I had ulcerative colitis backl at least there were periods of remission, this is constant 30-32 b/m daily, and whenever scoped my GI says it looks good.

Paulin, I’m sorry to hear that you are having so much trouble with your pouch. I had an abnormally high frequency with mine plus recurrent high grade dysplasia in the anal cuff that made pouch removal necessary.  I strongly did not want an ileostomy with its issues and was fortunate to get a BCIR. Like most people with these procedures, I enjoy a very good quality of life.  I empty my pouch with a small plastic catheter at my convenience 4-5 times a day.  I do not know if you have heard of this option (or the closely related K pouch), but these are available options that do not require having an outside bag.  In some cases, a J pouch can be used to make a K pouch or BCIR.  Please feel free to send me a PM if you have any questions.

Bill

I hear ya.  It can b so draining.  My dr tells me the same that all is good with the pouch when I am scoped.  I am thankful for that but what's all this; I'm getting that it's the way it is and and these are all the other issues from having a J pouch.  I would have never had surgery but it was my last resort.  I am glad I don't have a bag I just can't live with that.    

You are so lucky Billy, cant get the BCIR in Oz, had the J for 23 years now the ileo for last 18 months, can't say I like it but stuck with it. Actually found out there is a surgeon in Melbourne who does the K pouch but only privately, because of UC nobody in Australia will insure me so catch 22

 

thanks for replies, I would get a K or BCIR in a shot if I could, even considered returning to the UK - my skin doesn't like the bagbut its a long way back to find out if I'm suitable, prob take months to get sorted out so for now at least I have to stay with the illeo

Hever,

They are starting to do the BCIR in London as well...please find out if you are a candidate and if you can get coverage...I cannot stress enough the importance of Quality of Life...we need to be in control of our bodies and not the other way around if and when possible...

Maybe we can get them to bring the BCIR to Austrailia and get you in as the 1st test candidate???

Sharon

Yeah that'd be good cos I hate this contraption stuck on my belly, get lots of skin issues lately, going on for weeks and finally spoke to a stoma nurse who told me what to do so now its healing, but its a hassle I can do without, no health fund here would take me on as an existing condition and the public system doesn't do the BCIR only the Jpouch so right now i'm stuck, but have to make the best of it tho I resent the time spent on doing it all

Maybe I'll win Gold Lotto

Hope you are keeping well

Heather

 

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