am so sorry for your situation.  i too have chronic pouchitis and as i've become resistant to antibiotics and either other meds don't help or hurt--as you experience--i faced the dreaded bag.  had it for a year, in 2000, and simply didn't like it.  am 68 y.o. and very active.  am scheduled for the k pouch at cleveland clinic in 3 weeks.  might the k be in your range of possibilities?  good luck with doc visit and outcome.  

I thought u can still get pouchitis with a k?

AllyKat, it might be helpful to think about rare-but-serious side effects a bit differently. When you describe the medications as "causing" lymphoma, melanoma, etc., it's hard to think about them in a measured way. For example, you wouldn't talk about crossing the street as causing you to be struck by a car, though in fact crossing the street really does create that small risk.

I hope this is of some help to you as you choose among diffcult options.

allykat

you can get pouchitis with a k pouch, and i must admit i am concerned about that.  so happens that most of my pouchitis is caused by ischemia, from the initial surgery 15 years ago.  from what i have read on this forum i am planning on daily flushing out the pouch so that there will be less time for the condition to manifest/less, and also consume no refined sugars.  it is one of the risks that i am taking, and am nervous about it. 

what have you heard/read about pouchitis and the k pouch?  do you have ischemia?  

like you i take family genetics into consideration relative to medications.  i've had too many side effects to ignore the potential.  please get back to me as to what the doc suggests.  do you live in an area where you can go to another hospital system to get a second opinion?  i suggest getting out of a system due to 'group think'.   janet

What is ischemia? Oh I looked it up. No I have good blood flow. It sounds like a great option for you. 

Will they use your jpouch or make a new pouch? I hope u don't need to lose more intestine.

Wow, can't believe Bauer does not take Medicare. Even Dr Milsom at Cornel takes that.

Im going over to Siani late Nov for a second opinion.

Many years ago I saw Dr Rubin, I'm almost positive it was him. If it was he wears a bag. 

Thank you Scott

Hi AllyKat,

I am so, so sorry...I understand perfectly...you are at the end of your rope and all of the options that they are offering to you seem booby-traped...they all have potential side effects but sometimes we feel like magnets for anything and everything that can go wrong...so are pretty sure that if there is a side effect to 'catch' then we will...

So hard to go from a success story to a full out disaster is so short a time...you have really tried it all thus far.

I am a risk taker (no always a good thing) and will go the whole 9yards and try anything if it has the potential to save my pouch but will stop immediately if there are side effects...the fact that it is unhooked and still not behaving is not a very positive sign...is it you or just the pouch? Would a redo change anything? Could they build you a new pouch (you said that you don't have CD) or a k pouch?  Unless you have already had a new pouch done you should have enough gut leftover but would it work? Is it worth the risk to you?

You have to weigh the options...obviously you cannot keep living in this hell...how do you feel about that bag for life? Can you go through yet another surgery (to either remove the old pouch or build a new one???), are you willing to try those meds with your family history?

None of the options is any good but which one is the least bad?

Personally I would go for a 2nd, 3rd or 4th opinion before embarking on any major change in meds or biology...

My heart goes out to you

Sharon

What is ischemia? Oh I looked it up. No I have good blood flow. It sounds like a great option for you. 

allykat--ischemia was a result of the initial surgery--wan't appraised of this situation until years later.  it's complicated

Will they use your jpouch or make a new pouch? I hope u don't need to lose more intestine.

the cleveland clinic doc says j is too diseased to reuse, so will use 80cm or so for the k.  will ask him to reassess the situation when they take the j out. ( mind you bauer wants to reconstruct the existing j, but that's a loooong story.)  apparently even if the k fails i should have enough intestine for the bag.

Wow, can't believe Bauer does not take Medicare. Even Dr Milsom at Cornel takes that.

Im going over to Siani late Nov for a second opinion.

Many years ago I saw Dr Rubin, I'm almost positive it was him. If it was he wears a bag. 

fascinating.  how did you find that out?  he is very athletic looking i.e. fit and active.  maybe if everybody says go to the bag you should have a consult with him and he could be inspirational.  he was very generous with his time.  i'm now terribly embarrassed that i told him i had a bag for a year and hated every day of it.  at least i didn't complain to anybody at the time.

i agree with sharon, go for more than two consults.  so important go to a different hospital system for the 2nd opinion.  i'd go to rubin in a second--but takes me 5 hours to get there!  

what happened at today's appointment?  janet