Hi I am having to make a major decision regarding my health. In 1992 I had a j pouch operation after many years of fighting UC. It was meant to be the start of a healthier life. well 15 years later and 12 or more operations on i am still having problems ( pouchistis, blokages , fistulares) and recently had to fly home from a european holiday due to a fistulure that keeps reaccurring between the pouch and vagina. this has been repaired and fixed with temporary ileostomies etc for many years and yet it keep coming back. I am at the end of my tether and am to again have surgery on the 14th of Feb . whaT I have to do is decide whether to try again and keep the pouch or go for a permanent ileostomy and maybe - just maybe be able to get on with my life. my problem is I am very active - I swim, I cycle and do alot of outdoor activitie and am concerned that I would not be able to do this with a permanent illeostomy as when I had the loop ileostomy ( temporary ) it really wasnt comfortable and the bags leaked and fell off and stuff. Is there anyone out there who can give me advice on this - anyone out there with an illeotomy who leads a really active lifestyle ( all the people I have meet so far are not sports minded) . can it be done? as i cant keep going on the way things are and I'm afraid to take the plunge and get a permanent ileostomy in case it isnt the right thing to do,
thanks Liz

I've been kayaking, hiking and swimming (frequently) with my perm ileo. I also carried a baby full term and am now a very active Mom. I am much happier and healthier with my ileo than I ever was with my pouch.

Loop ileos are generally harder to manage than ends and if you go perm, you'll get an end ileo. Then, you may have to experiment a bit with the products to get the right combo for you; took about 2 months for me to get the right products and routine.

I just got back from yoga and will be hiking again when the weather warms up here. A nice thing about hiking with an ileo is that it is very easy to deal with...I don't even have to pull my pants down far to get the bag out, empty it and be done. In my opinion, once you get the right system in place, there should be no problem maintaining the lifestyle you want.

I cycled over 2000 miles last year with my ileo without a single problem. I'd think you could do all the things you want to do much more easily with an ileostomy than an uncooperative j-pouch!

Good luck,
Kenadi

I'll second what Jill and Kenadi have said.

I have a perminent ileostomy after losing an 8 year battle to get my j-pouch to function properly. Me and Wee Willie (my ileostomy) have travelled far and wide in the 3 years since we've been together and there really isn't anything that I feel I can't do with Wee Willie that any j-poucher or coloned person can!

Like Jill says, once you have an ostomy appliance that you are confident with the sky's the limit!

Good luck.

Shell

Lissie
It sounds like having the j-pouch hasn't been the greatest experience for you all around. 12 operations is a lot for one person to endure in a life-time.
I just got my j-pouch but lived with an ileostomy for two years (end and then loop). And yes, as noted above end is much easier to manage than loop. I'm not super sports-minded but did enjoy some sports like aquacize, swimming, pilates, weights, cycling etc... The one thing that I really hated about swimming was locker room changing. I always went away to change as it made me uncomfortable that someone would see my 'bag'. But it never fell off or leaked at any time I exercised. You made a comment about that, and I'm wonder if the products are better now since you last tried in in the 90's? You can become very adept at handling the 'equipment' quickly and efficiently with no problems. You have a big decision to make... Good luck. Please let us know how it goes.

Thank you everyone for your wonderfukl replies. it is so heartwarming to know there are people out there who actually understand what I'm going thru. New Zealand perhaps does not have the variety of ileo bags that youget inother places n the world but I am one stubborn woman and wont rest till I find something that works.
I am still pretty much in turmoil about what decision i will make but am erring towards the permanent ileo as you folk all seem to get along just fine and i cant caryy on like this.
I will let you know what i dedide and how it goes and finding this site after 20 years of doing this alone is a life saver.
lissie

sorry I just read what i typed and the spellings awful - thats becuase I'm crying with relief that theres folk out there like me. better typing next time guys
thanks

Just a note to say you're in our thoughts- it's a huge decision to make, but once it's made you'll feel better. Only you can know what's best.
Paul had his end ileostomy surgery done just 4 weeks ago after suffering from chronic pouchitis and running out of options. He didn't deal with the complications nearly as long as you--you've put in your time, and you'll make the right decision.
Having said that, he's doing awesome, all things considered. Having a good attitude helps, I'm sure. In 2 weeks we're leaving for a couple nights to take the kids swimming at a water park hotel in Massachusetts. He's so ready to get away, mentally and physically! As his wife I really stand in awe of what he's been through and how well he's handled it.
It's okay to cry-- one of his close friends is a nurse and told him that he needs to grieve for all his body's been through and for the "parts he's had to say goodbye to" 'Sure seems like accurate advice.
Keep your chin up. We're new at this, but even at this early stage his future looks much brighter than his last 5+ years have been.
All the best to you.
Paul and Betsy

Thanks Betsy
I too have a wonderful partner in Carl and without him I dont think I would have coped this long - I tend to get people telling me how strong I am but I always thinks that carl and other partners ,like you,are the strong ones as you could walk away if you wanted to , we cant!!
I know I will be fine eventually and I hope that Paul continues to get well and that you all have a wonderful holiday.
I will let you know how things go for me
lissie