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.

@Mysticobra What a great idea to give an appliance a trial run for a couple weeks. Brilliant. I am especially glad to learn you have had it for 8 years and your life is the better for it. Thank you for your posts.

Mysticobra - Can you tell us some of the pros and cons of having the ostomy (vs. j-pouch)?  Thanks so much!

Debbie

I have no pros for a pouch.

None. Having one in my situation was worse than the uc I had been dealing with.

All my pros go to an end ileo.

I have zero problems. Eat what I want. Take no medicine.  Change once a week. It may leak but it's no big deal to change if it does. It's part of having one.  But I only have leaks from the wafer as I am moving and bending and not thinking at all about it.

All I can say. Although it's not.

It was my cure.  I have no issues with it.

Now. Me be lazy. That's another story for a different day! Lol.

Having uc and a pouch that didn't work at all was a 24/7 job.

Richard.

I am a serious swimmer.  Have you had leakage at the wafer while swimming (if you've tried)?

Nah. I'm not a swimmer.

But even thinking about it I would see any issues with the water.

Now. Tempature may cause issues. The wafer is stuck pretty good. And I can't imagine it would leak. If it doesn't leak one way. Inside out. I don't think it would leak the opposite. Hot tub may cause it to soften.

My son has a full sized pool. Never been in it. But the appliance is not what holds me back. Just not a swimmer.

Richard.

Thanks - I swam with the temporary and didn't have problems.  I suspect some of the snootie members of my swim club might but I'll just have to make sure they never find out.

Ya can't worry about other people and what they think.

They didn't go through all what we did to get where we are at.

Small minds.

Stand proud with it.

Never be embarrassed by it.

It gives life. 

My perspective anyway.

Jump in that pool. Once in. Who cares. Enjoy what you do.

Richard.

Eleven years ago, I was faced with that decision.  A colorectal surgeon in a second opinion confirmed that my J pouch had to go and only recommended a permanent ileostomy.  I strongly did not want a bag and was fortunate to get a continent ileostomy (BCIR).  This procedure has given me a very good quality life, I encourage others to at least check out the continent ileostomy option before deciding what option would be best for them.

I published an article entitled, "Researching My Options" that can be viewed on the Quality Life Association's web page (www.qla-ostomy.org) under the Ostomy Options and Education tab.  This web site has additional information about continent ostomies, including a list of doctors who are familiar with this procedure plus access to videos of surgeon presentations at QLA conferences.

👍

Hello MikahTheBikeLover,

People deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  In 2007 after 17 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm 70 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 15 years old.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

Caty

Couldn't have said it better.

Especially. And I quote.

"Why did I wait so long".

I thought the exact same thing.

All the misery we go through can be eliminated but we are all afraid of a dreaded "bag".

But as it did for you it gave me my life back.

After my removal. Sleep came back immediately. That was the first time I slept six hours straight without drugs in years and it felt so good.

You spoke your truth.

Good for you. An ileo is a life saver.

Richard.

Thank you everyone - very helpful and lots for me to think about!

I do hope you find your zone.

Everyone is different.

And it's a difficult decision to make for yourself.

Good luck!