J pouch surgery (worth it?)

I would say overall yes it’s worth it. Now, some of it will depend on your age and how your body responds to the pouch. There is definitely a “learning” stage where your body has to acclimate to its new way of doing business. The first month is all about training the pouch to not have to be emptied immediately. This takes time, patience, and butt cream!

I found the stoma always got irritated, but then again, my butthole gets irritated a lot, too, mostly from hemorrhoids, though occasionally from burning butt syndrome.  It is just that the stoma type burning was more unpleasant. And I didn't like looking at the bag. 

Now if I had the opportunity to redo my decision to remove the colon or not (one tumor, UC in remission), I might have had them just remove the tumor and not the colon.  The colon has an important role in the body and I'm forever trying to rebalance the system, like daily.  Not sure exactly how to do it yet.  It's only been 20 years...

I’m very glad to have gotten my J-pouch over 20 years ago. It hasn’t been perfect, but it enabled me to take up scuba diving and study martial arts with my daughter (neither of which I had any idea about when I had my surgery).

People who have great outcomes with J-pouch surgery aren’t generally posting about it on social media or support forums - they’re busy living a normal life. A relative of mine had J-pouch surgery at 8 years old and completed medical school a few years ago. He is much too busy to see your question here.

It’s a very simple choice for me.

once i went down the colectomy path, it became a binary choice, appliance or internal j pouch .

while I question whether I should have had surgery  at all, given the choice above, I choose the pouch every single time.

its far from perfect, but no appliance for me, NOT EVER!

Hi there,

Yes! For me, definitely yes. It hasn’t always been easy but neither was my stoma and bag I had for 6 months. The adhesive irritated my skin and it was just kind of gross to me.

Like others have mentioned it takes some time for the pouch to settle in and for you to learn what foods might bother you.

And like Scott said, when things are going really well, pouchers probably aren’t here posting how great they feel.

Best of luck to you

Thank you all for replying, everything you have all said makes sense and is in my mind when making this decision, I feel I shouldn’t even of had the first operation in the first place, I have irritated skin, I can’t stand the look of the bag find it disgusting, I was a bodybuilder before the operation and would love to get back on stage, obviously the doubts kick in when all you read is problems after problems

If it's a choice between the bag and the j-pouch then it's a no brainer: J-Pouch.  I've had mine for over 20 years and no problems besides butt burn and having to go to the bathroom more than a few times a day, which quickly became the new normal for me.

I became a member here back in 2001 when I had my j-pouch surgery.  Was active for a few months but haven't really been back since then until recently when I came to post about an valid iLex alternative that I've been using.  I've just been living my life all this time.

Some people don't have the option to have the takedown for the j-pouch (or maybe this has changed over the last 20 years?) so if you can then I would advise it.  My quality of life is much better than when I had my ileostomy.

Diagnosed with UC in 1989

J-pouch surgery in 2001

Takedown 2 months later.

Sometimes this site disgusts me when discussing either the pouch or appliance.

And opinions expressed that the pouch is the way to go and the appliance. Bag. Is disgusting and ugly to look at.  That is a opinion of individuals. And opinions like that do not belong here.

There are people here that have had both.

And had to get rid of the pouch and go with an appliance. They are not. I repeat. Not ugly and disgusting.

They save lives.

Get right down to it. Most here could handle an appliance.  And most that speak of it have temporary ileos which are very hard to deal with. An end and final ileo like I have is so simple. If I can do it anyone can.  I'm saying that because I can't do squat most of the time.  I'm all thumbs.

All I can add is a pouch or keeping mine would have killed me. It just did not work. And I exhausted all means of keeping it.  Now some here just by all means keep it. Dealing with burning issues to taking an assortment of over the counter and prescription drugs to keep it.

I don't take anything. I can eat anything.  I have a normal life.  It's not ugly to me. It works and works well.

Personally I'd never have another pouch and all that goes with it.

Sure. I'd say try a pouch so you don't have regrets later. Which is what I did. My regret is I didn't go straight to the appliance. Wasted two plus years in misery and pain. Physically and mentally.

All I ask is some refrain from saying how disgusting a bag is and no way would they do it.   

It becomes part of the problem with perception of an appliance for people who have them or are considering them.

Of all places where people are trying to make an appliance normal. This place should be pro active in not demeaning the thought of having one.

The poster is right. She reads alot of people with pouches are suffering. Looking for remidies to keep it. No matter what.  Some will. Some won't.

I couldn't keep mine.

Now that I have had an appliance for over seven years it means it saved me.

And I have it figured out. I can go seven plus days without changing.  They make them so discreet no one knows you have one. 

I have no butt burn. That kept me from sleeping along with a constant urge to go. I have no skin issues. An end ileo is a different animal compared to a temporary ileo. I've had both

No sleep and working is a recipe for disaster.

Sorry if this post disturbs some. And I apologize if it does.

But I am speaking up. Bags are not disgusting or ugly. They are what they are.

But be pro active.

Perspective.

Means alot to new people who come in here.

Richard.

After 30 years and now facing either a permanent ileo or a pouch redo, honestly, I’m leaning toward the first.  I’m 62 and I think your age is a huge factor in whatever decision you make.  For me, I’m kind of done with the j-pouch.  If I could go back to 1995 knowing what I know today, I would be a hard no to the j-pouch.   Was it worth it?  For me, no. Just my humble opinion.

Sorry.  Best wishes for a happy and healthy future whatever you choose!!

@Momof2 posted:

After 30 years and now facing either a permanent ileo or a pouch redo, honestly, I’m leaning toward the first.  I’m 62 and I think your age is a huge factor in whatever decision you make.  For me, I’m kind of done with the j-pouch.  If I could go back to 1995 knowing what I know today, I would be a hard no to the j-pouch.   Was it worth it?  For me, no. Just my humble opinion.

Age and how long we have to live with what we decide on. Is a big factor. I got mine when I was 60.  An age where vanity is long gone. Lol.

Now. Being young and other factors if you are. Certainly the pouch if possible is the way I'd go. I did. Even at 57.  But it didn't work. But a young age of course is a big factor.  I'd try the pouch first.

Especially if I wasn't married.

I don't know. We all have specific reasons and things going on.

Yes

Best wishes and a healthy future to whatever you choose.

Richard.

At 62 years and 30 years of inconsistent quality of life, I would opt for the ileo.  Again, we’re like snowflakes, no one is exactly the others!

Assuming highly skilled surgeons in either case, I would say there is more certainty and more control with the ostomy than with the pouch.  And less interrupted sleep.  

I had a J pouch for 30 years.  It was not an easy ride, but i was able to adjust my routine to make things acceptable.  Cancer in the anal canal made it necessary to have my J pouch removed.  I strongly did not want to get a conventional ileostomy and was able to get a continent ileostomy that does not require having an external bag.  I have had a BCIR (similar to a K pouch) with excellent results for 11 years.  This procedure is not suitable for some people and there can be complications that may require pouch repair or removal.  Since these are major surgeries and may be permanent, I suggest researching your options and talking with surgeons who do them.  I wrote an article entitled, "Researching My Options" that can be viewed on the Quality Life Association web sire (www.qla-ostomy.org) under the Ostomy Options and Education tab.

I agree that Mysticobra's surgical decision was the best for him and has provided a good quality of life.  However, it is important that these forums provide a variety of information, even if some might feel uncomfortable about it being there.

AMB.

I had a very good surgeon for all of it. And the same one for all of it.

I was having so many problems even after a year into the pouch she said she could fix it. I asked how?  With an end ileo. Yup. Like everyone else I too wanted to avoid it.

But she was right. A year after that she did it and I'm fixed! Lol.

I just hung on too long.

She left it all intact down there in case I wanted to have another pouch created. I asked her if she'd do it. It was a definite "no".

And I'm good where I am.

Sleep is a wonderful thing!  I still remember I slept six hours straight. The first time in over two years.  And I will never forget it. Now I get probably too much sleep. But that's not a complaint. Lol

Richard.

So happy to hear that an end ileo is better than a temp one.  That's great news!  Any of us j-pouchers could go down that road at any time. And if the ileo was what made my life better after suffering too much with the pouch, you can bet I'd love it and think it beautiful.

@Mysticobra posted:

Sometimes this site disgusts me when discussing either the pouch or appliance.

And opinions expressed that the pouch is the way to go and the appliance. Bag. Is disgusting and ugly to look at.  That is a opinion of individuals. And opinions like that do not belong here.

There are people here that have had both.

And had to get rid of the pouch and go with an appliance. They are not. I repeat. Not ugly and disgusting.

They save lives.

Get right down to it. Most here could handle an appliance.  And most that speak of it have temporary ileos which are very hard to deal with. An end and final ileo like I have is so simple. If I can do it anyone can.  I'm saying that because I can't do squat most of the time.  I'm all thumbs.

All I can add is a pouch or keeping mine would have killed me. It just did not work. And I exhausted all means of keeping it.  Now some here just by all means keep it. Dealing with burning issues to taking an assortment of over the counter and prescription drugs to keep it.

I don't take anything. I can eat anything.  I have a normal life.  It's not ugly to me. It works and works well.

Personally I'd never have another pouch and all that goes with it.

Sure. I'd say try a pouch so you don't have regrets later. Which is what I did. My regret is I didn't go straight to the appliance. Wasted two plus years in misery and pain. Physically and mentally.

All I ask is some refrain from saying how disgusting a bag is and no way would they do it.   

It becomes part of the problem with perception of an appliance for people who have them or are considering them.

Of all places where people are trying to make an appliance normal. This place should be pro active in not demeaning the thought of having one.

The poster is right. She reads alot of people with pouches are suffering. Looking for remidies to keep it. No matter what.  Some will. Some won't.

I couldn't keep mine.

Now that I have had an appliance for over seven years it means it saved me.

And I have it figured out. I can go seven plus days without changing.  They make them so discreet no one knows you have one.

I have no butt burn. That kept me from sleeping along with a constant urge to go. I have no skin issues. An end ileo is a different animal compared to a temporary ileo. I've had both

No sleep and working is a recipe for disaster.

Sorry if this post disturbs some. And I apologize if it does.

But I am speaking up. Bags are not disgusting or ugly. They are what they are.

But be pro active.

Perspective.

Means alot to new people who come in here.

Richard.

My sincere apologies in my poor choice of words. I have had both a pouch and a temporary “bag”. I found the bag to be irritating to my skin. It was difficult to take care of because of that for me. On the flip side, the pouch also has its problems. I will try everything possible to keep my pouch for as long as I can, due to the horrible experience I had with the bag. Maybe a permanent “appliance” would be a better situation. I don’t know. It is nice to get your perspective on a permanent end ileo and I thank you for that. Truly, it is encouraging

Mrs P

I was 32 years old when I had my surgery and the 8 weeks with the temp ileostomy was very hard for me indeed.  My wife really didn't seem to mind, it was me that felt bad, discouraged at the possibility, small though it was, that the take-down might not be successful. 

At 55 years old now, I know things would be very different.  It would be a transition but I would be pretty ok if I needed to get an ileo.  And it's good to know that a permanent ileo is much better than a temp one.

But I've had little trouble with my j-pouch through the years and because of this I hope I can stay this way for a long time.

@Mrs P posted:

My sincere apologies in my poor choice of words. I have had both a pouch and a temporary “bag”. I found the bag to be irritating to my skin. It was difficult to take care of because of that for me. On the flip side, the pouch also has its problems. I will try everything possible to keep my pouch for as long as I can, due to the horrible experience I had with the bag. Maybe a permanent “appliance” would be a better situation. I don’t know. It is nice to get your perspective on a permanent end ileo and I thank you for that. Truly, it is encouraging

Mrs P

I understand.

I based my experience on getting an end ileo on the temporary ileo I had. Which was a horrible experience.

Raw skin and constant leaks. Omgoodness. It was terrible with the temp.  It's what I expected an end ileo to be like. I was wrong.

The end ileo is a totally different animal.

Once accepted by me and figured out how changes are done after trial and error.  I'm ok with it. I feel as though I've had it alot longer than I have. It's a part of me.  And I accepted that.  I didn't fight it.

Richard.

I got my jpouch at the age of 56. I suffered with UC since 98. In 2011 I had a very severe relapse & had to make a choice.  No doubt it's a very difficult choice, it changes your life as you once knew it.  As a woman having a ileo was a outright No.  When I had the temp ileo I had so much suffering with leaking & burning.  It just could have been because my condition was very severe between life,or death.  I like the comment we are like snowflakes all different, in our diagnosis & personal self & body type.  The J pouch was just as much of a struggle & it took years for me to finally c the light.  It's a hard road. So in saying all that it's all up to you & which rd you think will work best. No major surgery is easy & you want quality of life. Best wishes & pray yours is successful.   Either or these choices are not for the faint at heart.

I have had my j-pouch since 2011 and I got my life back. Granted, our “normal” is a different normal, and it takes a commitment to get there after the surgery; for me it was about a year. But if you are active, and acknowledge surgery and recovery are going to take some time, it is a gift to have the option. Good luck and good health to you.

HI I had a j pouch in 1995, and had a stoma for a year which was challenging. I  then had internal pouch. Yes I had teething problems and pouchitis for a short while. Being a Woman I had collection of fluid in pelvis  for years and had aspirations, which caused adhesions. 29 years later,other than gallbladder problems, I have learnt to love my Pouch and quality of life. So wholeheartedly I would say J Pouch is worth it..

I’ve had 3/4 possible permutations (no K pouch) other than death ;-) I had an end ileo after my first surgery. I kept it for 14 months so I could get back to work. I’m actually surprised that more here haven’t had experience with an end ileo (which is the same as a permanent ileo) as I figured the 3 stage procedure was pretty common.

My hand was forced to have stage 2 (j pouch formation) by a steroid dependent flare in the rectal stump with a lot of bleeding. I would have chosen to keep the end ileo for another 14 months to finish up that phase of my career. But had stage 2 and loop ileo. Had post-op infection and the loop was a nightmare. Constant need for IV fluids and one SBO after another. Spent the better part of 5 months inpatient. Since stage 3 (takedown) I have had nothing but problems with the pouch. I’ve had an anastomotic leak from day one, bone infections etc. More importantly, the pouch has never worked well. Other than the leak, it’s well constructed but just doesn’t work. Irrigate multiple times daily. Lots of partial bowel obstructions. The pouch has sucked every day for the few years I’ve had it and I’m just biding my time to go back to the end ileo. In this entire journey, I felt the best with the end ileo. No enemas or IV antibiotics.  No lying on the bathroom floor with obstructions or just brutal gas. The only thing holding me back is dealing with another major surgery and recovery. I don’t want to sacrifice more time and career advancement. I was, of course offered a consult for redo and I thought no way in hell (with my deepest respect for those that went that route of insanely complicated and risky redo surgery) . Wish I had never heard of a J pouch, never mind a redo! And Im a younger female for context.  I fully acknowledge this is a very personal decision. I had no issues with the end ileo and wish my personal decision had been to get on with my life 4 years ago. Feel like I’ve done damage to mind and body with this new fangled organ inside me.

This is a timely thread as I returned to the forum to see if there was a permanent home for those returning to the bag. I have some questions and plenty of concerns, none of which surround living with the bag but the surgery/recovery and frequency of SBOs thereafter.  Would be nice to have as a saved topic though I know it’s blasphemy to add a permanent thread on ileos on a j pouch forum!

Thanks for reading the rant. It’s the 11th hour for this pouch and starting to feel the tension. I fear the next end ileo will somehow not be as great as the first after all the damage of the past few years pouching. Ah, hindsight as they say. Good luck all.

Pouch2021, are you aware that there's a whole section pertaining to ostomies? Go to "home" and scroll down, where you'll see lots of entries from those having returned to end ileos.

@roseviolet posted:

Pouch2021, are you aware that there's a whole section pertaining to ostomies? Go to "home" and scroll down, where you'll see lots of entries from those having returned to end ileos.

I didn't and that's exactly what I was looking for. I just didn't scroll down far enough. I'll check it out. Thanks!

I suppose it is a bit of a crapshoot (pun intended) but I think a majority of those who had it done are happy with it.  I have not had too many complications and only one blockage but I would not have changed my mind based on where I am at now.  It takes time...for me almost 2 years to get back on track but I was working the whole time and I think my issue was being on steriods for far too long.

Anyway I had my takedown in 2009 and while not perfect I live about as normal a life as I could expect.  That was NOT the case before the surgery.

Best of luck!

I hated the bag as I sweat and it was like a band aid that when you first put it on it was ok but would deteriorate overtime and I couldn't bring myself to sleep under blankets and it would leak if I was cutting the lawn.j pouch is more pain and long recovery but a more normal life.

Chook2, are you talking about when you had a temporary ileostomy? If so, those are notoriously far more problematic than a permanent ileostomy. The permanent  version shouldn't be giving you problems such as you experienced.

@Mysticobra posted:

AMB.

I had a very good surgeon for all of it. And the same one for all of it.

I was having so many problems even after a year into the pouch she said she could fix it. I asked how?  With an end ileo. Yup. Like everyone else I too wanted to avoid it.

But she was right. A year after that she did it and I'm fixed! Lol.

I just hung on too long.

She left it all intact down there in case I wanted to have another pouch created. I asked her if she'd do it. It was a definite "no".

And I'm good where I am.

Sleep is a wonderful thing!  I still remember I slept six hours straight. The first time in over two years.  And I will never forget it. Now I get probably too much sleep. But that's not a complaint. Lol

Richard.

@Mysticobra

Richard - A good surgeon knows when to retreat.  

3 years in I am doing mostly fine, but only because I am on (if I remember to take it) Rifaximin 3 times daily.  It's been a life-saver since I went back on.  Had to switch my insurance to the platinum version for it to be covered. My retreat may well occur if the drug is no longer available to me. In the meantime, I invested in a luxurious warm water/ heated seat bidet, sleep is only briefly interrupted, I am a regular user of expensive pads to protect against surprises attributable to having no cuff mucosa, and my annual screening pouchoscopies involve an overnight in NYC, with banding or balloon dilation these past three years.  (Hoping this year it will be just a straight scope - but we'll see.)  And diet is still quite careful.  

It's a lot of maintenance for the privilege of not wearing an external appliance.   Since my very well constructed loop ileostomy caused me no grief, and I had acclimated to it by the time of take-down, I often wonder whether I made the right call.  But for now, at least, the battle advances.  

-A

@roseviolet posted:

Chook2, are you talking about when you had a temporary ileostomy? If so, those are notoriously far more problematic than a permanent ileostomy. The permanent  version shouldn't be giving you problems such as you experienced.

Yes I had the temporary ileostomy so probably was more problematic but I also didnt like being reliant on a bag.during covid I worried about supply issues.

Honestly, it depends. Some people have horror stories and some people have positive stories. Some get lucky and some do not get lucky. Unfortunately there is no way to know until you get it.

My experience: I have had my surgery for almost 10 years and no major issue. I have never had pouchitis in my j-pouch life. I also poop close to 14x a day or more than 14x a day. Some people on here have said I still have a plight since I poop so much but not to me. Compared to what I was going through before: pain, joint pain, bleeding, medicines, doctors bills, hospital bills, I am free! I just poop more and i have to use butt cream and wipes. I love what i have because i am free. For me J-pouch surgery is worth it but its not worth it for some. Ultimately it is your decision but my experience may be different than yours. It may be worth a try that way you can tell yourself that you tried everything you could.

Originally before the J-pouch, I wanted a bag but the doctors said I am a good candidate for a j-pouch so I opted for J-pouch and it is amazing!!!

Pm me if you have any more questions or post it here

@AMB posted:

@Mysticobra

Richard - A good surgeon knows when to retreat.  

3 years in I am doing mostly fine, but only because I am on (if I remember to take it) Rifaximin 3 times daily.  It's been a life-saver since I went back on.  Had to switch my insurance to the platinum version for it to be covered. My retreat may well occur if the drug is no longer available to me. In the meantime, I invested in a luxurious warm water/ heated seat bidet, sleep is only briefly interrupted, I am a regular user of expensive pads to protect against surprises attributable to having no cuff mucosa, and my annual screening pouchoscopies involve an overnight in NYC, with banding or balloon dilation these past three years.  (Hoping this year it will be just a straight scope - but we'll see.)  And diet is still quite careful.  

It's a lot of maintenance for the privilege of not wearing an external appliance.   Since my very well constructed loop ileostomy caused me no grief, and I had acclimated to it by the time of take-down, I often wonder whether I made the right call.  But for now, at least, the battle advances.  

-A

Amb

My surgeon knew less than a year into my J pouch what should be done.

But being stubborn I kept it.

I should have taken her advice then. Cause I did later.

Trust me when I say she was an excellent surgeon and knew what she was doing and what was going on with me.

She gave me the solution. But I didn't want it at the time. 

And she would and never did retreat. We worked together to try and solve it.  I would not want a different surgeon. 

Richard.

Richard.

Richard,

Where'd you have your surgery?  Women colo-rectal surgeons are still fairly rare. Is she still practicing? The one I know is about to retire.  I have a very good surgeon I'd return to if need be,  but it's good to keep track of the options.

-A

She was in ft worth TX.

She was part of a team.

They each took turns on lead. And took advice from three other surgeons. She had done quite a few pouches. As with the other Dr's in the office.  Alot of experience was there. She was or had to be close to 40-45 years old. And had a way with patients other Dr's I've seen didn't. She could read a person. A d she knew I was a pain in the ass from the beginning.

Lol. I would have no problem recommending her.

I have t seen her in over six years. I've had my ileo for close to eight and only had checkups after with her and no problems since. Small issues. All has been put in word here and will live forever.

If I do have a problem anytime. I still have her number.  Lol.

Richard.

As LoEC said, it depends.

For me, I would do the j-pouch 7 days a week and twice on Saturday.  The 37 year trip hasn't been flawless but it beats the pants off my old colon.

We all have our own approaches -- there's probably some statistical correlations to some of the 'best' advice but we also have to live our own lives.  I choose to eat & drink whatever I want ... exercise hard ... ignore leakage ... and generally just deal with any consequences. 

Net, embrace what you choose / surround yourself with a supportive & loving network / get at least one second opinion.  Best of luck.

@Mysticobra posted:

She was in ft worth TX.

She was part of a team.

They each took turns on lead. And took advice from three other surgeons. She had done quite a few pouches. As with the other Dr's in the office.  Alot of experience was there. She was or had to be close to 40-45 years old. And had a way with patients other Dr's I've seen didn't. She could read a person. A d she knew I was a pain in the ass from the beginning.

Lol. I would have no problem recommending her.

I have t seen her in over six years. I've had my ileo for close to eight and only had checkups after with her and no problems since. Small issues. All has been put in word here and will live forever.

If I do have a problem anytime. I still have her number.  Lol.

Richard.

I'm curious about who this person is.  I'm in Austin. I just recently restarted my relationship with a colo-rectal surgeon and am going to April Fox (the one who did my surgery died).  I don't know that much about her yet.

That's not her.

Gordon is her last name.

One of the Dr's she teamed with retired while I was post surgery.

Can't remember his name. But he was well informed on pouch surgery. Even advised strongly that it may not work. My uc was very close to the end of my colon. But even with his advice he did say it may be worth a try. I know it sounds counterproductive.

But we tried. Didn't work.

Never knew why. Just didn't.

Good luck.

Richard.

@Mysticobra

Thank you!

@Stoma BB posted:

Hi everyone I’m new to the group, I’m looking for people opinions on the j pouch. I’m in the middle of researching if it’s worth having the reversal as I’m meeting the surgeon next month to discuss if I want it or not. All I’ve read is negative stuff about the j pouch, so can I get opinions whether it’s worth doing or not please as I’m in 2 minds

Thanks in advance for your time

I love my pouch.

I work out at the gym every day, coach my kids wrestling team.

I eat pretty much anything I want. It's more about portion control for me than the type of food I eat.

I'm personally very happy with mine.