J-Pouch Issues - At what point did you decide to go back and get a permanent ostomy?

The permanent ileostomy was the lesser of two evils for me. I had the j-pouch for almost 7 years and I kept hoping things would get better. They didn’t and I wondered at what point do you say enough is enough? It was a good decision for me to excise the pouch. Five months out now and I feel great—I’m finally getting a good night’s sleep again (only up once), my diet is pretty much whatever I want, I can drink alcohol again and emptying the bag takes two minutes compared to up to 20 minutes in the bathroom with the j-pouch. It sucks that you’re so young and looking at a permanent ileo, but sounds to me like you’re ready to throw in the towel to improve your quality of life. That’s what it came down to for me.

@Mikah the Bike Lover posted:

I got my pouch when I was 12 and I've had a good 10 year run with it. Starting a  couple of years ago I've been dealing with chronic pouchitis, abdomen pain + fatigue, weight fluctuation, long times in the bathroom, incontinence, and prolapse issues (even after revision surgery to address it). I also have Hypermobility Spectrum Disorder (probably hEDS) which doesn't help the prolapse issue. I love being active and walking/hiking/biking but I have been spending pretty much all of my free time lying in bed tired and in pain. I'm fed up at dealing with these constant pouch issues, shitting myself at night, and am considering a reversal to a permanent illeostomy. My quality of life has been adversely affected and I just want to feel better again.

What was the deciding factor for deciding to bite the bullet and get a permanent ostomy?

I just got a referral for a consultation with a colo-rectal surgeon at UW to talk it over but it's a big decision and I would love to hear other people's thoughts.

Do you have sensitive skin? I don’t have EDS, but I have a lot of trouble with any kind of adhesive dressing, so I dread to think what having an ostomy bag attached for the next 20 years would do to me (I’m a lot older than you). For this reason, I have held onto my malfunctioning j-pouch.

Whenever I try to explain how sensitive my skin is, doctors dismiss it by saying “Oh you can use hypoallergenic products”. But they are just as bad.

I’m also on the borderline of dermatographia, need extra dental anesthetic and have orthostatic intolerance, so I have a few minor things in common with folks with EDS.

It seems to have gotten worse as I have gotten older. I tolerated my intra-sugery ostomies okay decades ago, although my skin was always very red around the stoma. However they were only a few months each.

I had my pouch 24ish yrs.  My deciding factor for removing the pouch was the fistulas and abscesses which made me very sick, and like you, I spent much time in bed and/or just feeling miserable, and/or seeing my surgeon and having procedures, etc.  

Ostomies are not ideal by any means, but I felt I had to choose between feeling miserable with a jpouch, or feeling quite good with an ostomy, and I now very much enjoy finally feeling good with my end ileostomy .  Another high point for me is that I have not seen a GI doc or surgeon since my pouch was removed.  Knock-on-wood.  I'm sorry you're facing such a decision at this age.

@Kushami posted:

Do you have sensitive skin? I don’t have EDS, but I have a lot of trouble with any kind of adhesive dressing, so I dread to think what having an ostomy bag attached for the next 20 years would do to me (I’m a lot older than you). For this reason, I have held onto my malfunctioning j-pouch.

Whenever I try to explain how sensitive my skin is, doctors dismiss it by saying “Oh you can use hypoallergenic products”. But they are just as bad.

I’m also on the borderline of dermatographia, need extra dental anesthetic and have orthostatic intolerance, so I have a few minor things in common with folks with EDS.

It seems to have gotten worse as I have gotten older. I tolerated my intra-sugery ostomies okay decades ago, although my skin was always very red around the stoma. However they were only a few months each.

I luckily don't have sensitive skin - I often use tape to stabilize my joints and have no issues. I'm sorry that you deal with that!

I too, have had many issues with my j-pouch. Chronic pouchitis, many peri-anal issues. It has affected every aspect of my life for the past 14 yrs. I finally, with help from my primary Dr, am making headway thru pelvic floor physical therapy! Apparently this is a new field. Thru this p.t , I have pulled up the abdominal muscles to clear the blocks that are causing many potty trips. And plenty of Lidocaine for awhile, for the pain in my rectum and surrounding areas.  My Gastro Dr. blew off these very real issues and sent me toa wound care place that is an ostomy place. they was trying to convince me to reverse the surgery. No, no, no, I did not want to do such a life changing surgery because in the first surgery with the ostomy  it took a long time for me to adjust, and my skin was always inflamed inside the bag causing pain.  I still have issues but they are much less than before but things are getting better slowly.  Such a life changing surgery! What i want to know is why don't these Drs listen? He keeps telling me that I have antibiotic resistant pouchitis. I have not had that much antibiotics over the years. And what about all the irritations in the peri anal area? why don't they address these issues? Afterall, it is because of the Crohn's that I have these problems and that has very little to do with the pouch itself. I think it s due to the Crohn's. and should be treated that way. The pouch is the small intestine and why don't they see and treat the pouchitis like they treat the Crohn's?   With a biologic when the antibiotics don't work.  Just because I don't have pain in my abdomen doesn't mean I am not in a flare up.

I”m in a similar situation - thinking about getting a permanent ostomy but I”m much older than you.  My pouch no longer empties properly so I have to catheterie it (using water) 4 times/day.  It’s extremely limiting although I can do an enema instead (not as good) and have learned to do one anywhere (including those awful airplane bathrooms).  I think an ostomy is almost certainly in my future - it’s just a question of when. And I’m highly complicated because my pouch was already redone which means only certain surgeons can remove the pouch.

Any input on life with an ostomy after years with a j-pouch would be appreciated.  I’m a swimmer so I’m a bit worried about that.

Thank you!

Try this.

All who doubt.

It's not the real thing.

But it gives you an idea what it will be like.

Wear an appliance for a couple weeks. Put some apple sauce in the bag. Not alot. And wear it.  You don't have to empty it. But you'll get an idea how it feels. How it affects your skin. How easy it is to wear. Hide. Whatever.

I did it for two weeks while I was working.

It definitely gave me an idea of how it would be.

Shortly after. I had my pouch removed and have had my end ileo for over 8 years now. Not perfect. But a hell of alot better than all the misery I was in.

Just a suggestion.

R.

Great idea. I’m worried about skin issues so I’ll definitely try it.

thsnk you

Welcome.

I left it on just short of two weeks.

Nobody at work knew i was doing it.

But it didn't irritate my skin

Now that I have one permanent.

It still doesn't. Feels itchy at times. But I got used to that. Just don't scratch it. Lol.

It's like  I got used to the constant ringing in my ears. Some days are worse. Sometimes the itch or ringing isn't even there.

Good luck!

R.