i cannot believe i am saying this..kpouch,bag!!!

I was so terrified to get the pouch surgery bc of the bag. I, too, said I'd rather die than live like that. It sounds dramatic, I know, but it was sure I'd wake up every morning hating my life.
Maybe it was bc I knew it was only temporary, but I managed it well. Physically I felt so much better then than I do now, 8 months post takedown. Lucky for me I never had any issues with raw skin, bags leaking, etc. My biggest problems were sleep related, I'm a lifelong stomach sleeper! Plus, my stoma was very active at night, I'd have to get up 4x a night to empty the bag. It sucked royally. However, lately I've been asking myself 'how much is too much?'. I'm fed up with anal pain, incontinence/leakage, cleaning up poop ALL DARN DAY, butt irritation, itchiness, having to constantly wear a pad, not being able to do some things I want bc of this leakage, etc. I know it's too early for me to be thinking that, but I never dreamed it would be this frustrating.
Katie

omg you are already having me see there still could be no peace with a bag..one of the things i deplore is being up at night to have to go to bathroom sometimes requiring sitz bath if i feel sore itchy and so on....so you could be up at night emptying..and already know you can have site infections leaking and so on.finding peace would be my only reason to do what was the unthinkable for me..i am fearful my luck has not been good with all high statistics of uc control,pouch success..i have failed both..can one fail the bag too?

as for you you already have the pouch and there is much better chance of complete success with it and a good life if you are one of the lucky ones..yes you need to give it a good year at least..

Rebecca,
I only had a temp ostomy for 8 weeks and hated it. I didn't have to get up all the time at night and empty it and I didn't have skin troubles. I have sensitive skin too so I am surprised I didn't have problems. Mine was just poorly positioned so it never had a good seal and I had to change it every other day. They say permanent ileo's are really better than temp ones. There are different sizes of bags too. Some hold more than others.

This whole thing is not at all what I thought it was going to be either. I have chronic cuffitis and pouchitis. I've finally given in and decided I need to take antibiotics more often than I have been. I'd been waiting until my pouch gets too inflamed etc., before taking antibiotics. My GI is having me rotate between 2 different ones.

I'm assuming your pouchitis and bacteria overgrowth hasn't responded to antibiotics. My GI said that the dosage that I'm taking is low enough that it won't cause a problem should I get an infection elsewhere in my body and need to take an antibiotic. Have antibiotics failed you? What else have you tried? I've been on them for 2 weeks now and still feel like crap.

quite the contrary ,my pouchitis has responded to antibiotics for 6 years...i rotated them ..but i rotated three at first..which one are you on?what is dosage? and two weeks is a lot of time to not feel effects of antibiotic..i usually get a positive response in days..

oh and do no be afraid to take antibiotics if it works..we have to choose our poison..for me getting my pouchitis under control was the important thing..

quote:

are any of them guarantees

Benjamin Franklin wrote "In this world nothing can be said to be certain, except death and taxes."

Two options after a failed j-pouch:

Ileostomy with an external appliance and continent ileostomy.

There are two types of continent ileostomy: Kock pouch and BCIR. Both involve internal ileal pouches and could be prone to pouchitis and/or additional revision surgery.

Ileostomy has the issues related to the external appliance.

Of course, no option carries any guarantee of a trouble free existence. You just have to decide which risks you find acceptable.

Jan

Rebe,
I am a k poucher (35yrs now).
J pouches didn't exist in my day and I wasn't a candidate anyway...no anal sphincter...so the incontenece and constant accidents/cleanning up etc was my daily life...my whole life.
The k pouch was still in infancy back then and I was lucky to be accepted and have it done. I could not face an outside bag at 18...it had been my lifelong battle up until then to avoid it (they gave me a colostomy at age 2 but closed it at 3.
The k pouch changed my life.
I cannot say that I got my freedom back because I had never had it...never known life without incontinence. So this was a revalation.
It was not without complications or problems but after the 3rd surgery life got very good.
I married soon after...then divorced and moved to Paris, a dream that I had never believed possible...and lived mostly normally for 20yrs without too many complications.
There was no info out there to guide me or people to help so I figured most things out on my own and did a fair job of it. I found all sorts of ways to get things functionning and even figure out that a desociated diet worked best for me and my pouch (do not mix carbs and protiens, eat fruits seperately etc).
After 20yrs I had some serious problems, lots of surgeries to fix things and finally a semi-healthy, functional pouch again.
I work at 5 different schools all around the city, take public transportation, walk everywhere, use public toilets, eat out, shop, live and love normally.
Life (if not for the annex problems like severe sacroilitis) is mostly normal.
I swim, exercise daily and eat a balance diet, travel and enjoy the G-kids.
The problem is scarcity. Not many surgeons do this surgery anymore. Some do the BCIR (a close cousin to the K pouch) and some are dusting off the k pouch and considering reviving the procedure. But many K pouch surgeons are retiring and leaving us...so you may find it difficult to find someone to do it and if you get one it may be far away or difficult to find follow-up.
So...yes it is an option looking into, yes, when it works well it is great...But it does have it limits.
I would highly reccomend it but it requires a lifetime commitment. On the other hand you can always have one after a while spent with an outside bag or go from a kpouch to the outside bag...you still have options.
Sharon

I was in Katie's camp- I thought life with the ileostomy again would be the end of the world to me. Turns out I had to have a permanent ileostomy (K pouch was not recommended to me) and it's not the end of the world! For me, I have zero symptoms or problems, but realize it's just been 5 months. As we all know, things can change as the years pass, but for today I'm totally feeling great and loving life. Yes, I had to change my routine and little and buy some new clothes (not necessarily a disadvantage, right?). Yes, it was a major of the major surgeries and a pretty serious recovery, but standing on this side of it, I can say I have no regrets in my decision. I was out of options to help sustain my jpouch health and my chronic issues of Crohn's of the cuff (was cuffities) and r/v fistulas. Today? No more! Completely gone!

I found many helpful posts searching this site...and many real stories of the trials of it all. I too avoided them until it was time to think seriously about my decision. It's bowel disease we're taking about and it's nasty to the core, so there are no guarantees of cures. But we can keep searching for what can heal us next.

Laura

Every so often I end up in the surgeons office and asking for my pouch out. And every time they find more meds to get it working again. Really think this out as pouch removal surgery is not the easiest. If it were this pouch would have been gone years ago. Also, any good surgeon unless things are dire will not just remove it. Ie failed medication, surgical complications, fistfuls, etc. It's been 15 year roller coaster for me. Personally, I'm starting to believe that this surgery should not be offered until they can figure out a better way to keep u healthy.