Dear all,

 

This is only my second post, I'm fairly shy about it all, so thanks for listening.

 

I've had a number of surgeries over the last four years, maybe ten, and am sort of at my wits end now. You can see the see-saw of my surgeries below. I'm on my third stoma at the moment.

 

The frustration I repeatedly have, is that my whilst my Jpouch works really well after each take down (in fact I'd go as far as saying it works better then I could have ever wished for - I never suffer butt burn, nor incontinence. I could sleep a good four to six hours straight at night and I could even - and excuse the term, 'fart without fear'!!)

But my issue is, a part of the join on the pouch never seems to heal watertight, as I believe it should scar over. I'm told when I leave the theatre in hospital I am 'water-tight' but that somewhere in the healing process, a tiny hole opens up which of course means infection, and of course the pouch 'failing'.

 

In mid-July I was devastated to be told the Jpouch was no good, that it would not heal right a third time so a take down is not an option. The recommendations are a re do, meaning a totally new Jpouch joined lower down on the stump, which has many many high risk complications attached to it, or to lose the Jpouch and get sealed up.

 

It's taken me two months to sort this all out in my head, and I don't want to sound ungrateful because I know the wonders these surgeons do. But I could see a life ahead of me with my Jpouch, which is why I cling on to it. I have had stoma's for the best part of four years now and people say you get used to it, but I still despise it. I find most days a real struggle with it, and I guess I haven't yet come to terms with that as my future.

 

If anyone has an opinion on my situation I'd be really happy to hear. I don't want to lose my Jpouch if I don't have to, I linger hopes for the future that a tiny hole must be repairable...

Or does anyone have knowledge that unfortunately this is the risk you take when you get a Jpouch done, and that sad as it is, I'm in that small % where the Jpouch fails.

I guess I thought Jpouch failure would be via incontinence, or something else, not a tiny hole. Sod's law the Jpouch would have to be so great in each short time I got to use it. 

 

Please feel free to ask any questions, or offer any opinion on the matter. I've so far been on the NHS, which in England means it has been free - which has been amazing. Perhaps a private consultant would be more optimistic. I just don't know.

 

Thanks in advance, and good luck with all your own daily battles

 

Alex.

 

Original Post

Hi Alex, My first pouch failed because of a separation on the staple line.  I was hopeful that it could be repaired but no joy  and  I elected to have a pouch advancement.  A diversionary ileostomy was created during the first surgery.  Three months later, the cuff (the bit of colon that remains in a typical j-pouch  surgery) was removed, the pouch was reshaped and brought-down and the new connection was hand sewn.  After I healed, I was reconnected. Early j-pouch surgeries all used a hand-sewn connection.  Surgeons moved to a cuff with a stapled connection becasue of the higher incidence of failure of the hand sewn.   Please ask if you have any specific questions.  Best, Steve

A hand-sewn attachment is a much more delicate surgery, so the skill and experience of the surgeon matter a great deal. Perhaps you could find out who's most experienced at this procedure in your area? A hand-sewn procedure carries a higher risk of incontinence, which is why the stapled procedure is usually done first.

 

FWIW, if you've had the same surgeon all along perhaps it's time to give someone else a chance. You've been through a lot already.

I agree that another opinion is in order. Sure, sometimes a redo is what is needed, but if the defect is only at the attachment, then pouch advancement could be quite possible and successful. Sadly, repairs and "wait-and-see" approaches usually do not work in the long run. I had a pouch leak, but it healed up before they even knew it was there, so they only had to deal with the infection part. That was bad enough, but at least I did not need further surgery.

 

I do know that there are a number of fine surgeons in the NHS that are skilled in j-pouch management, but I don't know if they are at your location.

 

Jan

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