J-pouch removal - Has anyone faced this issue?

Wow, what a time you have had.  I'd be curious to see if others have had this issue as well.  Anything could happen to any of us at any time so this is all good to know about.

Mysticobra is on this site and he has gone through that, I would send him a message that way he can answer all of your questions.

Wish I could.

The only thing is my pouch was removed completely. I still have everything else . No pouch. I still have my anal canal. Short it may be. But sewn from the inside. I don't have mucus issues.

I just wonder although you had it a long time why not. Or why they didn't take it out?  It's useless like an appendex now. And causes probs.

Sorry your going through even more at your age.

Awful.

Richard.

Hi Richard - thanks for your reply. Guess I am reluctant due to my age & medical issues.  Dr decided not to remove J-pouch in 2017 at time of permanent Ostomy surgery telling me it would be a less invasive & quicker operation & faster recovery time; also I could emit daily mucous daily from the left over pouch & rectal muscles.  I did but only for about  6 years & now I have this problem getting out the mucous even though he has twice dilated my ‘rectal sphincter’, once under anesthesia.

i am planning to get the J-pouchectomy done August 5th.

i would like to know from you how long & painful was your recovery from your pouch removal surgery  - also was it more or was it less uncomfortable than your original ileo-anal surgery when your pouch was first installed?

Thank you.

I see why and understand why they left it in.

I only had mine for two plus years. It just never worked. So the removal of mine was probably pretty easy considering it was only there a short period.

It was my fourth and last surgery and the was the easiest least painful of all.

The other three getting the pouch was complete misery. All worse than my original problem of uc.

I recovered fast from removal. Four weeks and I could have went back to work. Easily.

But I was already off work and took another two.

Anyway 

I am so sorry that you have to go through all this bs.  You had yours a long time and it's probably adhered in there pretty good. I'm no Dr.

I was 60 when they took mine out. Considerably younger.

I do hope they find a solution for you so you can live the rest of your life without dealing with it more.

It's where I'm at. Of course I have an appliance. But thats nothing compared to what I was going through. I'd take five appliances on my stomach before I went through that again. Lol.

Being 81 and having the pouch so long they probably did the right thing. But left you dealing with what you have now.

Which stinks. Bring polite.

Richard.

@Mysticobra posted:

Wish I could.

The only thing is my pouch was removed completely. I still have everything else . No pouch. I still have my anal canal. Short it may be. But sewn from the inside. I don't have mucus issues.

I just wonder although you had it a long time why not. Or why they didn't take it out?  It's useless like an appendex now. And causes probs.

Sorry your going through even more at your age.

Awful.

Richard.

Did they take J-pouch out or did they unravel it??? I just wanted to make sure.

And do you have to still clean the anal canal???

All I know is they took it out.

Unravel was never spoken. So I don't know what that is. She just took it out.

And my anal canal gets a bit. I mean a tiny bit of mucus. It's really negligible.

It doesn't get past or come out.  Never has. And as time goes there is less and less mucus. I think there is just enough. I don't think it should dry up. That would seem to cause a problem. If it did. I don't know.  It's never appeared on my underwear or anything in the 7-8 years I've had it.

But as far as I know it was a complete removal.

She... As I have said before. Left everything else in place in case I wanted to have another pouch made.

No thank you! I'm fine.

Richard.

Mmm... I. Haven't seen a Dr about any of my condition in like six years.  I know my surgeon is still active. But I have no reason to bother her with questions.

Kenneth.

I do hope you get some answers and relief.

This is a terrible disease and the things we go through to get at least a decent life is a long road.

Richard.

@Mysticobra posted:

All I know is they took it out.

Unravel was never spoken. So I don't know what that is. She just took it out.

And my anal canal gets a bit. I mean a tiny bit of mucus. It's really negligible.

It doesn't get past or come out.  Never has. And as time goes there is less and less mucus. I think there is just enough. I don't think it should dry up. That would seem to cause a problem. If it did. I don't know.  It's never appeared on my underwear or anything in the 7-8 years I've had it.

But as far as I know it was a complete removal.

She... As I have said before. Left everything else in place in case I wanted to have another pouch made.

No thank you! I'm fine.

Richard.

Mmm... I. Haven't seen a Dr about any of my condition in like six years.  I know my surgeon is still active. But I have no reason to bother her with questions.

Unravel meaning they took the J-pouch apart and put it back in, but I guess that would not make sense because since it has been altered it would be better to take it out, yeah that makes sense now that I think about it.

Oh okay, I thought you had to take a enema or a suppository to clean out the anal canal, but it seems what you have been doing has been working just fine! Especially since you have not had it appear on your underwear or anything, that is excellent!

And yeah getting another J-pouch at your age and after everything you have been through would be a lot. And going through the healing process would be terrible to do that again.

It might be a good idea to get a scope through the small intestine to check it for Crohns and just to check on it in general. Some ostomates see a gastro to get scoped every now and then to make sure everything is okay.