If the surgeon believes the fistula was a sign of Crohn's Disease, it may have been (for him) a game changer. Most surgeons won't construct a J-pouch when the diagnosis is Crohn's. I was turned down by a couple of surgeons before I found one willing to make a J-pouch for me.

Scott - this is good to hear - the fact that you kept pushing for something you wanted.  Good for you!  Sue - if you can stand to do it, it might be worth getting a couple of other opinions.  I know there is no perfect answer.  But, I sure have learned to ask more questions and to advocate for myself through the years. Doing so takes energy - and it has gotten harder to do so as I have aged.  I hope you have some family that may be able to help you reach out for answers from other docs.

Hello. 

I had my pouch removed a month ago. 

I thought I would chime in. 

I went thru pure hell to create the pouch. 

Then the  kept it for two plus years hoping it would work properly. 

It ever did. 

I dreaded having more surgery and kept putting it off. 

Well I finally gave in cause I couldn't live like that anymore. 

It was punishing. 

I read on here on how bad or serious the surgery was to remove it and go with the end ileo.  So I dreaded it even more.  But I still went through with it.  

Of course you think of how final it is and you will live with a bag the rest of your life. 

But I will be 60 soon and have... Had to do something. 

I have a short time on this earth and I didn't want to fight the pouch any longer. 

It wasn't worth it period. 

Now that I am a month past surgery I know I did the right thing.  It was not for me.  The pouch that is.  

I had the surgery and figured it was gonna be bad... Real bad. 

But it was a breeze compared to what I went through two years ago.  A month out and I am healing nicely.  I am gaining my weight back.  5 pounds in two weeks!  I didn't gain that much that fast in the two years with the pouch. 

The surgery of course was a bit painful but I healed fast.  I took 9 months just to get back to work for my pouch surgery.  And I never gained my strength back as quick as I am now. 

So.... My experience with the pouch removal was good.  I should have done it sooner.  I have no regrets. 

Of course I am still learning to take care of the bag and stoma but I am so confident now it will be a breeze. 

So I would say anyone that is contemplating pouch removal because they are at their wits end. 

Just do it. 

Of course one factor in my decision is my age.  If I were younger I may think differently. 

Richard. 

I choose to try and save my pouch with Entyvio.,had second reversal,yesterday. No guarantees but I'm 62 as well. 

Look a that years of pain you have listed below your post allykat.  

Im sorry and I am not singling you out.  

And my wife asked me this while I was going through my troubles. 

Why?  Why was I going through all I was just to poop out my butt. I couldn't answer her.  

The bag is a relief.  I had a constant urge to go for over a year.  Pain... Cramping... Butt so sore I couldn't sit down. 

Not worth it.  You can have the pouch and all the problems.  Mine are all gone.  Even just  after a month I am happier.... Getting healthy.  I am starting to love my life again.  I don't have to think..... Or my pouch doesn't do my thinking for me.  

I'm happy I did it.  And anybody contemplating it should not be afraid to do it. I 

Sometimes it's a curse and to read what some will go through just to keep it boggles my mind.  

No thank you... And I apologize if I have offended anyone. 

Richard. 

Richard, I am glad that your j pouch removal went well and that you are on the way to recovery. From what you have posted, it sounds like an end ileostomy was the right decision for you. There certainly will be no regrets on your decision since you gave your pouch a good chance to work out, and I wish you the best. I certainly gave my j pouch plenty of time and put up with the frequency problems, leakage and skin irritation over many years   The recurrent high grade dysplasia was the final deciding factor to have the pouch removed.

For those facing this difficult decision, I would first determine that no reasonable measures are going to make the pouch function at an acceptable level since there is no going back once the pouch is gone. Personally, I did not want the bag with its commonly associated issues (even though many people have had a good outcome with it). Those contemplating j pouch removal may want to consider the k pouch or closely related BCIR, which avoid the need for the external bag. Lots of information is available online about these procedures, including their benefits and risks. This is a personal decision that should be made after doing your research and in consultation with your doctor. Both of these surgical alternatives can be done at a later date for those with end ileostomies that present unresolvable problems.

Yes, I must be crazy. But when my pouch is not inflamed life is good. I've had plenty of years where things were good. 

 Thank you. 

My decision was right before me because of my age and I have to get back to work!  

K pouch and bcir are out.  Might as well have a bag.  I didn't feel like shoving a catheter in there all the time.  

And besides with my pouch not functioning I would have given me problems if left in. 

It was discussed at length. 

The thing is I see on the board is people suffering to no end to save something that is infected or takes extreme measures to keep.  While like I said suffering through it all.  It's not as easy to do all the searching and time involved to find something that may or may not work. 

So... With me... I just ended it.  It was right for me. 

I couldn't see spending many more years for the Dr that might or might not be there to fix it or not.  

I'm done with it and happy I don't have to deal with the stupid thing anymore.  I took over my life as it is doing to a lot of people on this board.  A bag is not that bad. 

It's a relief! 

This is a very person decision and I am so thankful for you that it has provided you with such relief.  If you've given the pouch all you had (and I know you did) and it became such a huge obstacle - it seems very clear you made a great choice.  I agree that age has a lot to do with the choice....someone up there said it - yes, I agree.

I think for some, the reason they continue is they do have some really good years with it - then a bad one, then more relatively good years, etc.  I would imagine when the bad day in and day out overcomes the good - then the decision is sort of easy to make.  (By easy - I don't mean "easy" in the traditional way - I mean - as in a marriage that is falling apart or something - there comes a tipping point - and really, the only choice is to move on. - It's not an easy choice - it becomes for the parties involved the only choice).  I'm thinking of my first marriage all those years ago - which fell apart - and much of it had to do with my health issues and the pouch - we were in our 20s.  It was too much for my first husband to deal with.  The maturity was not there.  Luckily, I found a wonderful second husband...but I stayed on my own for about 5 years in between.  That was worth it - to see that I could work, go back to school, deal with the pouch, etc. helped me gain back some belief in myself and my abilities to cope.  So important when you are that young.

Back to the issue at hand - I admire your decision.  I hope that if living with the pouch ever becomes that unbearable for me, I will make the same choice.  I think reading about decisions others make going through this - no matter which one they make - is very helpful to those reading.  So, I thank you all for sharing your stories. 

Allycat - btw - you are not crazy.  If I listed all the things I've been through with the pouch under my name, it'd sound similar.  Here's the thing- I've had it 30 years.  There were ups and downs - for now ups still outweigh the downs. Sometimes the pouch issue was impacted by other health problems, surgeries for other things that had nothing to do with it, etc.  So, you are not crazy! (Well - anymore than anyone else is if you've lived long enough! I think you are brave and did all could do and then finally said, "enough" - no choice anymore.  I can't remember if you got a regular ileostomy or a k pouch - I hope you are adjusting.  I know this decision could come my way as I age - and as I said above, hearing from different people on the forum helps me - so thank you so much.

Very well said! 

I am a determined person. I was bound and determined that my j-pouch would work. I suffered for 5 years. It never worked right and I had abdominal pain from all of the open surgeries I've had. My marriage suffered but he is still here. We just celebrated our 40th wedding anniversary. I'm 60 in a few weeks. I feel like I'm 80.

Since my surgery diverting to a permanent ileostomy my life is better. I still have all of my other health problems but this surgery has helped me get some quality in life back.  All I needed was for one thing to get better and it has.

We discussed other options and advancement surgery was ruled out. Our discussions were with my surgeon and GI together at the Mayo Clinic. My surgeon suggested excising it. I just couldn't deal with recovering from another major surgery at this time. 

My diversion surgery was the first laproscopic surgery I have ever had. My surgeon found an abdomen full of adhesions. It took her 3 hours to lyse them. She wasn't expecting all of that. The surgery was 4.5 hours and she did not remove my j-pouch.  If it causes problems again I will get rid of it. I am finally feeling better. My abdominal pain has gone way down. She scoped my j-pouch 2 months after the surgery and there was no longer cuffitis or pouchitis.  

If anyone reading this is on the fence about surgery to remove it you might want to consider diverting from it to a permanent ileostomy as I did. I'm glad Richard is doing so well! It has been nice to have him and others to support one and another other during our recent surgeries.

I just want to say how happy I am for you Richard. I agree that Jpouch life can indeed be terrible when things do not go as planned. I don't care about how I go to the bathroom... I just want to wake up in the morning and not wonder if today will be a good day, or whether there will be incontinence, torturous spasms, and 15 BM's.

Keeping the pouch isn't worth all that for sure. The problem is that I'm only 22 and while I don't want a life chained to the toilet, I also am afraid of the risks of permanent damage from pouch removal surgery. So at the moment I am getting by as best I can until I can feel comfortable taking action. Drugs have not helped so far.

Angie, I decided to keep my pouch and try to save it. 

Richard,  I'm glad for you. This is such a personal issue.

Yes.  I agree it is a personal... Very very personal decision. 

Solo.  As for being so young I do understand how you may feel.  It is a tough to decide and I would feel so much different if I were in my 20's. I cannot imagine. 

I am so fortunate.... I have been married close to 39 years and I have a wife who could care less if I have a bag.  She want me healthy.  Big big factor to have someone support you.  She has been so supportive through... Well... A very long time... 20 years of it.  I have had it all my life but no big problems until I hit 40. 

I would do all I can to save it were I in my 20's also.  

I appreciate all the kind comments.  And I wish all the best to all who are struggling with pouches. 

I did too.  But I just couldn't do it anymore. 

I have another grandchild coming in days.  It makes five grandchildren.  I want to be here healthy and happy to spend time with them.  Which I really have struggled to do with what was going on. 

Solo.... One thing... If you do decide to go permanent... Don't be afraid.  The surgery was a breeze for this old man.  The pouch surgery almost killed me.  So it made it a breeze.  I healed very fast.  I didn't want to do it either.  I was scared.... Of the surgery and of course wearing a bag. 

I am not now. 

I still have adjustments to make in my life.  Getting used to the bag is one.  But it gets easier every day.  I am not healed yet.  Biggest problem is around my stoma.  Dang thing is irritated.  If I can get that healed I would be fine. 

I do wish you the best.  I know how bad it is.  I was there. 

If you have any questions... Anybody.  Pm me.  Or post here.  If I can help I will. 

Richard. 

After reading all of the above posts, I see that each of you is right! Our journeys are very personal as are our reasons for making the choices we make. That's why the most important question we can ask ourselves is,"what is most important to ME." For me, it was wanting to reduce some of my pain and uncertainty as I also suffer daily migraines. It was needing more consistency because the uncertainty of every day was messing with my head. It was knowing that I had a highly skilled surgeon who felt confident with pouch removal. I was not as lucky as some here who have long good periods with their pouches. I had mostly bad periods. I'm also not 20 anymore, so I did base my decision on that. So we are all different, our concerns and priorities are different and, so, the moves we make pertain to ourselves and no one else and that's as it should be. One thing that we do share is that we are fr**king strong!

Right on everyone! 

SOLOMOSEAL , you have been hit hard with UC and all it entails in a few years. I had decades with UC before surgery. Hopefully your j-pouch gets better. I was told it could take a year to recover from the surgeries and others here said it could be 2 or 3 years. You have youth on your side. Please don't let this nasty disease and dealing with your j-pouch rule your life.