So at any point in time when Im not on antibiotics I am sick. I prefer not to be on more pills and just learn how to live everyday with this disease. That doesn't mean I don't want to feel good. It just means that when I feel great for a little while, its amazing. Then you go off the pills and cant even get out of bed. Is that better? I work a full time labor intensive job, maybe that's my problem. I've had UC/pouchitis for 13 years and half of that time i did everything the varying range of doctors told me to do. Did it ever really help? No!I take that back the 6 months i had a iliostomy , I felt great. Well I couldn't really move, but hey I didn't have to know where every bathroom everywhere was. I'm a 28 year old widow(melanoma age 23). When will i get my break or will it just continue and never end. I just want that happily ever after. Also i have to say i hate when you go to someones house for the first time and there only bathroom is in the kitchen.

Yikes, in the kitchen!!?! I'd hate that, too.

There's got to be something which can make your life more liveable; you've had continuous problems with the pouch? For how many years? Perhaps a permanent ileo would help, or maybe there's some treatment that I haven't heard of; have you searched the "pouchitis" section on this site?

Hoping it gets better soon,
Gin

Sonja6,

It sounds like you are stuck on an unhappy merry-go-round - with very little merry.

Have you considered going to an end ileo? My temp, loop one was not in a good location and I had too many problems so the thought of going back is not a good one. If I ever have to go back to one it's going to be a permanent one in a better location. Enough about me.

If you can't stand the antibiotics and you are in constant pouchitis it seems as going to a permanent stoma, while leaving the pouch in, might be a good option. A friend of my daughter's did this and is even wearing 2 piece swimming suits and feels normal and never wants a pouch again. She's a young woman like you. I have a video she made about it and if you want will send it to you, as long as you send it back - or maybe I'll try to copy it. If you want to see it please PM me.

Went to perm ileo at age 30. Felt great ever since. Have two kids both born after perm ileo - now almost six and three. Life is exceptionally ordinary :-)

Feel free to PM if you have questions.

As an aside, I have a cousin who was widowed at 24 due to a car accident. Three years later she is going to be married in march to a great guy that everyone loves. Happily ever after can happen. Just don't stop working towards it.