I've had chronic pouchitis ever since my take-down 12 years ago. I had been doing courses of antibiotics every few months and probiotics in between. For the past few months, I've been on continual antibiotics with no sign of getting off of them: Cipro, then Flagyl, now Xifaxan. Cipro works well but isn't a long-term solution. Flagyl is gross but somewhat effective. Not sure yet about the Xifaxan. I can still do my life with pouchitis, but need to make sure I'm near a bathroom, don't eat in public, I have a rather limited diet and I deal with leakage most days. Fatigue may also be an issue, but that could also be a by-product of my age and schedule. I am just so sick of the whole thing.

The thought of a permanent ileo scares me, but I also don't want to be on antibiotics for the rest of my life. I am active and enjoy activities like running. Would running need to be a thing of the past? I also dress professionally at work and wear tailored/fitted clothing, which I think would no longer be an option? And I'm trying to get perspective on the infections and irritations around the stoma. How do those compare with pouchitis?

I've heard that it is not uncommon for this surgery to get botched. While my temp ileo was created at a famous teaching hospital by an incredibly skilled surgeon (my stoma was beautiful, if you can believe that) and I had zero problems with it, I no longer have access to that medical system and would need to go through Kaiser, which has a mixed reputation. I'm considering changing my whole family's insurance to a more expensive option so I can find the best surgeon in my new geographic area and get whatever insurance s/he accepts. But it's just so. . . . permanent.

If you're willing to share how you knew it was time, I would appreciate hearing what you have to say. Based on what I've read on other posts, my problems are few and I should be grateful that I only have pouchitis to contend with. I've gotten feedback that it's too early to throw in the towel since I haven't gone down the path of immunosuppressants, but I think I'd rather get the surgery. I am blessed with a prince of a husband who will support me no matter what, which gives me more courage to explore options.

Thanks.

L Mac...Iam right there with you! Trying to decide how long I am willing...and able to deal with the 15-40 bathroom trips a day, very irritated and sore bottom, all the meds, etc. But vanity holds me back...I am 39 and still lead a pretty active life...love to swim, wear nice clothes, etc! Let me know what you decide to do and how it's going!

Each of us has to decide what we consider acceptable. For some, life long antibiotics are fine, for others, intolerable. Getting an ostomy should not require a world class surgeon, but I agree that not every surgeon in every group is great. Personally, I've had nothing but great care with Kaiser in my 40+ years with them, but it could be my location.

But, yes, there are those who have converted to an ostomy due to chronic pouchitis, and it was a good decision for them.

Jan

Thank you for your feedback. I'm still exploring options and will post any new info I come across along the way.

Lynne

I did it. Had chronic pouchitis for 3 1/2 years and didn't want to deal with it any more. Was offered a mucosectomy and other surgical options to "fix" my pouch, but opted for the ileo. I was 30. At first my pouch was just disconnected and while the ostomy worked fine, I had issues with the pouch still draining and STILL had pouchitis. 18 months later had the pouch out and have been 100% healthy and happy since (that was almost 7 years ago!).

I've had two children post pouch removal and am now at home with them, but prior to that was a Human Resources Director and dressed professionally all the time. It isn't an issue. Today I wore low rise pants with a form fitting cable knit sweater that came down only just past the button of my pants. It isn't an issue. I think people get wrapped up in worrying about this issue and trust me, it isn't a reason to avoid an ileo.

As for running, there is no reason you couldn't keep doing it. JasonPA who is on here occassionally (and is a former poucher now has a perm ileo) is a state trooper who wears a gun belt to work and plays full contact ice hockey in his spare time. I recently posted about a documentary about a US attorney living in Thailand who is on the amateur boxing circuit in Thailand. There just isn't anything an ostomy prevents you from doing unless your mind tells you it will.

Going to the ostomy was the best thing I've ever done. I would not have my children if I had stayed with my pouch. That's been the biggest up side for us. But, I also eat what I want, when I want, take no meds, sleep when my kids do, travel, go to the playground, anything any of my other Mom friends can do, I can do. I have a freedom I just didn't have with my pouch.

Feel free to contact me if you have any questions.

Oh, and when I go to Disney with my family in March, you will be able to find me in the hot tub every night after the kids go to bed

I had my j-pouch from Dec 2006 to April 2009. I switched to an end ileo. My only regret is that I kept the j-pouch in, it's just disconnected. I will eventually have to have it removed.

My day to day life is 100% better. I'm no longer living in the bathtub to relieve the butt burn. Pouchitis for me was just like having colitis again. That was a long 2 1/2 years, I'm so glad I had another option, and that it worked out so well.

Best of luck!

I did it October 2009. Having the J-Pouch was just like having UC, not quite as bad, but I was miserable. Since the end loop was created (my J-pouch is also still in, just disconnected also) Life has been 100% better. The "bag" takes a little getting used to, but after I found an Ostomy belt, boy it's been so much better than I thought. My surgeon and wife wanted me to keep my options open by keeping the J-Pouch, but at the time of the surgery, I knew I would never want to go back. I'm positive now that I will never go back to it. I just don't want to have surgery at some point to remove the pouch. I've had 6 surgeries and just don't want to have another. Good luck to ya! Oh yeah, I was 39 when I had the end ileo created, now I'm 40. I do everything I've always done with no problem. It does keep me out of the water more, but it's mostly just an excuse for me....never have been a big swimmer.

Hi
If you do a search on my recent posts, you will see that I too just opted for a perm ilio after dealing with a failed jpouch for 14 months.
For me it was a tough decision, but it was the best decision I could have made in the end. I had alot of great friends who gave me great advice. I would recommend talking to as many people as you can.
My final decison was based on the amount of chronic pain, pouch spasms, chronic loss of control, inability to go anywhere or do anything, and the amount of meds and procedures I had to constantly deal with.

I can tell you that now I am the happiest I have been in the past 8 years, and the healthiest.
Now, I am off the meds, can do anything I want, and feel great. After less then 3 months, I can believe how much has changed.
I never thought I would be able to jump up and go shopping, go swimming, or go for a hike again. Now I can.
I also have a disconnect, not a removal. My surgeon wanted to give me the opion of a reconnect or a revision later on in my life, but, honestly, I will never go back!

Going to a perm is your own decision and one that you alone need to make and be comfortable with.


Good luck to you -

Thank you so very much for sharing your experiences! This site has been an amazing resource and I am grateful for people's openness and knowledge. I'm still exploring options and your stories are helping me quite a bit.

Thanks,
Lynne

I agree with Lynne. Just reading about the trials and tribulations you have all gone through...puts it into perspective. I too am trying to decide what to do. Right now (past 4 days) things are great!! but I know that another bout of bad will come along. Especially as I wean off the prednisone!! (dreading that) but I am weighing my options and reading as much as I can to help make this decision. Thank you all for being so open and honest and putting your stories out there for others!
TJ

Hi Tarynn and Lynne,
I am right there with you too. I haven't found a successful treatment for pouchitis yet, and am going x20 day (including >5-8x night). Am having incontinence issues in the day and night. Its' nice to share the journey with others in the same situation. I dont remember having too much trouble with my ileostomy, but it is amzaing how much you forget in a few years. I can't even remember how often I needed to emtpy it.

I'm sick of chronic pouchitis too, plus the pain, million trips to the loo, can't plan a trip out, nothing spontenous, Boxing
day I went to my daughter's for a turkey, and because there were 11 guests, had to do an enima, so I wouldn't block up the bathroom plus all the embarrassment!!!! My husband is sick of it too, so illeo here I come, I don't remember that much about it as it was 18 years ago that the J was created, but I do remember doing what I liked, when I liked, and being for the firt time in years totally pain free, and thats what I want again. Heather

My husband suffered with chronic pouchitis for yrs before it was properly diagnosed and then after, too. He had his J-pouch made almost 14yrs ago and at about yr 6 began to have problems that only increased, never went away. It got pretty severe and he did end up getting an ileostomy, 3 months ago, although not solely because of the chronic pouchitis. The pouchitis, though, is what made him feel 'ready' for the ostomy --he was just plain sick of all the problems he was having with his pouch, the chronic butt rash, the bathroom frequency & how long he'd be when he was in there, and the little accidents he'd have. His butt just hurt all the time, too. He does not like his ostomy, hates seeing it and doesn't like the new things he has to deal with as he's learning about it.., but he is happy to have all the pouch problems behind him. When I asked him, he said the for him personally, ostomy over pouch. He is nervous, though, that he won't be able to return to power weight lifting, which he was able to do just fine with his J-pouch.

I went to a perm. ileo may of 2008.(I am 26 so vanity was a little bit of a factor) I have no regrets about having my pouch removed because I am free from pain and meds. I knew there was no way I could keep up with my now 2 year old son and be a good mom when I spent half the day in the bathroom. I'm planning a trip to europe for 2 weeks for this march! I too would rather have surgery than medications all the time...but I know that isn't everyone.
I am a healthy weight, use no meds, and did swimming lessons with my son this past summer every morning for 2 weeks.

The clothing options are wide open. Sure you will feel self conscience from time to time but you will be able to wear fitted suits and nice clothes. We don't all walk around in sweats all day! I find that wearing panty hose with dress outfits keeps the bag real snug and even so there is never a bulge before I'm able to empty it.

Best of luck, it is a big decision, but your life is only so long and you should be living it!

Dear Marcene, Thank you for your response...I can tell it is truly heartfelt. The past week or so has been good, but I know that tough times will come again. I am currently on a constant dose of prednisone and I am sure that is what is keeping the bad days at bay and i know that I can not keep that up forever. I have really thought about the vanity issue and after hearing all these inspirational stories I am starting to realize that it is such a small part of my life and that the people I love do not judge me by my appearance or disease. I think I will probably have the perm ileo within the next year...I am just getting myself ready for it!