15 years. Chronic pouchitis. Tried everything. Really sick again. I'm scared. Thanks for listening.
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I am so sorry...I know that all of the problems are intimidating, exhausting, frustrating and impossible to live with on a day to day basis but what are the options?
I am not an expert but there are 2 major ones that I know of...an outside bag and allow your pouch to rest/heal if possible and/or removal or an internal ileo that tends to have fewer incidents of poucitis due to/thanks to the fact that we empty it completely (liquidy stool) but has its weaknesses like a fragile valve.
No one should live with chronic pouchitis...but those are the only options that I can think of to keep it at bay or stop it completely.
Are either option imagineable to you? Are they feasible?
I do not know about you but I would personally (at my age) try the temp ileo option and see how you do before moving forward to a permanent solution. You may be able to get some relief that way and see clearer once you are not suffering.
Huge hugs and I hope that you find a liveable solution
So far my Drs have refused but will see what they say today.
I hate my pouch too. I am hopeful that we will get our differences figured out soon enough to avoid a divorce!
What did you find out Allykat?
My 'French Mother' (read: a woman who took me in and mothered me from the time that I arrived in France and has saved my soul numerous times) is full of old fashioned wisedom...
She once asked me why I had named my pouch George and why a guy's name...Why a name at all?
I gave her all of my usual answers, (a way to speak about him in public, a way to personify him etc) and she told me that as long as I spoke of him as a seperate entity, treated him like a stranger inhabiting my body (alien?) then I would never make peace with him and heal myself.
She asked me to find a different way of addressing him and his issues accept that he is part of me and not my enemy...
Not sure if I did it (I still call him George) but some people say that it helps the healing process and the reconcilliation process with your body "(Love your cancer and it will love you back???" sort of mindset?)
I am lousy at this sort of 'airy fairy' psyco-babble but maybe we should learn how to love it and see how it works for us (obviously traditional medicin has not been able to help us to heal everything and surgery can only go so far)...
Until you get a surgeon to agree with you that it is time to call it quits with your pouch or an internest or G.I who has a miracle solution to give you your life back it may be the only way to survive.
Just a thought (and please forgive me if this sounds stupid)
I'm admitted . Fluids got pouch moving but still feeling nausea and sick this am. I'm not sure of plan But I guess to see if they can get it under control And I can eat. This happened 5 years ago. See my post under pouchitis. I don't know why I get hit so bad.
I'm sorry you are in the hospital and so ill. I hope whatever they are doing for your nausea is working by now. I'll look up your other post under pouchitis. Sending good thoughts your way.
Sharon, That sounds like a positive way to think of our pouches. I just refer to it as my j-pouch and didn't name it or my stoma. I referred to divorcing it above as it sounds like a quick way of explaining all of the surgeries possibly. Like, there could be a trial separation which would be to go to a temp/perm ileo and letting our pouch rest - or getting a quick divorce with removing it. There could always be some sort of counselling when it undergoes a pouch advancement to fix it. You are right - none of this is funny but sometimes I think of it and other things in my life the same way. For example, I have divorced all the narcissistic people in my life and will never consider a reconciliation. Tried that and found out they never want to get better. I'm sure there are narcissitic people out there somewhere that do really change and some that change enough. I had some hard core narcissists sucking out my emotional energy.
I so agree...
When my dad had his stroke and I stayed by his side for the most horrible 6 weeks of my life (was on vacation with him in Fl at the time) I got back home shaken, traumatized and totally wiped out (he ended up having a craniotomy, with end result of irreversible hemi-plegia, aphasia etc and it took 2yrs of re-education to get some language and motor skills back)...a 'friend' called to complain about banalities like broken nails (!!!) and having to have her locks changed...I told her what had happened to my dad and she blew it off with, 'everyone dies one day'...lopped her off my address book in 1 fell swoop...then lopped off every other blood sucker, user and hanger on in my life until I felt light and free of useless burdens and toxic friends.
We have enough troubles in our poor little lives (and bodies) that we do not need toxic people to add to them...yup...I love your divorce analogy...Works great for me.
My pouch and I needed extensive couples counselling but we finally made peace...I treat it with respect and it does not bother me too much (I was seriously afraid that it would one day leave me!)...
Hope that you are feeling better and that the Plan works for you.