Saying Hello and Seeking Advice on J-Pouch Removal

Hello everyone! Hoping this message finds you well. I currently have a j-pouch after suffering from ulcerative colitis in my early 20s. My first pouch failed, but I was fortunate enough to find a surgeon who was able to create a new j-pouch, which I have had for 15 years (first pouch 13 years). Unfortunately, my pouch is again failing, and I am facing a permanent ileostomy. Does anyone have any experience of having a j-pouch removed?

Many thanks in advance for your advice.

Hi Mrs. Eff, welcome to the site. I'm surprised the surgeon did a second pouch, seeing how you were battling colitis, as it usually attacks where surgery was done.

Iggie!! Iggie!! This one has your name on it..

Sit tight, hon. He will explain.

G-Day Mrs_Eff,

I had a J-Pouch for 18 years, and if my doctor had said he was going to give me a second one, I would now be in jail. Mine was a disaster, and so were a few others on here. I now have a wonderful ileostomy, and so should you. You could have had 28 years of being as happy as I am with my ileostomy. Only about 1 in 10 J-Pouches works okay.

Please make life better for yourself and go for the ileostomy as well as a Barbie butt to eliminate other problems. Good luck.

Regards, IGGIE

I had very, very bad ulcerative colitis and was offered a J-pouch, but after hearing the stats the surgeon gave me, I opted straight for the ileostomy. IGGIE is correct as usually 🤣 only a very small number of pouches work out. I'm also having the Ken bum surgery now on the 24th of June after a postponement on the hospital's behalf.

Get as much advice on here as possible; it's a fountain of knowledge and lived experience. Some things work for some, and other things work for others. You will find what works best for you.

Mr B

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

Thank you so much for your replies. My first pouch was a disaster and I was in constant pain which the doctors said was all in my head. When I finally found a surgeon who agreed to help me, he found that my pouch had exploded and welded itself to my pelvis. I was ”fortunate” enough to have enough bowel left to have a second pouch but recently found out that it is failing. My only option is a permanent ileostomy, but I’m reading that having the pouch removed is very high risk surgery so very hesitant at choosing the surgery. I’ve had two temporary ileostomies (not sure if that is the correct plural) and coped well with them, but knew they were only with me for a short while. I’m a little afraid of how I will cope with a permanent stoma, so any advice would be most welcomed. 

If you read my note above, I did have my J-Pouch removed, got my butt sewn up, and received a great ileostomy. So if you want a better life, stop looking for problems; you have enough of them now. Go get yourself what you should have gotten in the first place: "AN ILEOSTOMY" and enjoy life.

Regards, IGGIE

Can't speak for having a pouch, but if you managed well with the temporary ones and the constant nerves of your pouch failing, surely it's a no-brainer. Far less chance of needing further surgery down the line and surely a better quality of life; life is for living, not wondering when it's going to blam! And back in the hospital….

Hello Mrs. Eff

Personally, I am not au fait with J-pouches - but I do know there are variants - including those with the living collar modification .....

However, if you have been advised there is no alternative to having a traditional Brooke's ileostomy - I might be tempted to get a further opinion - on the basis of your voiced reservation as to how you will cope with/accept the transition from an internal reservoir.

The concept of BCID is in relatively early stages of development - but may be a possible option if you were prepared to aspirate?

Just a thought. I mention this as an 'outrunner' consideration - given that you have had 30 years of bag-free lifestyle.

And also, as a possible option as the 'risk element' of the removal of the J-pouch is a stated serious consideration?

I guess it is this single aspect - the 'bag-free element' which is your prime reservation/concern ..... given your 30-year history of 'internal management' of your condition?

Clearly, you are aware of your history of pouch weakness - but you do not state what led to this - and whether an element of sepsis was involved when, as you express it, the explosion occurred ...... HOW did it fail?

Also, whilst you had colitis, were there/have there been any other concomitant conditions/diagnoses .... i.e. the cause or base for your condition may be the ultimate driver here - for it would appear to be down to histology - and for a full understanding of this you may require a surgeon who has a background in bowel failure to aid your decision process? ..... you are talking elective surgery in so far as timing is concerned - so could afford a delay perhaps to take in another opinion ...... for currently, you have no breach in your abdominal wall - but presumably potentially quite extensive adhesions from both of your JPEG surgeries?

I appreciate that you have learned to deal with a degree of pain in your journey so far ...... and for that element alone, you have much empathy - for clearly, you are a focused lady: I hope you are able to continue your route of choice which best suits your personal hopes and wishes. Please take care with your next steps.

I wish you all the luck in the world - for hope is a helpful hand forward - so long as balanced with good sound advice.

Best wishes

waves from the UK

~ ~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~ ~

Thanks so much for all the responses and advice. I had my two pouch surgeries in the UK but now live in Sweden, so navigating the healthcare system here is a little daunting. The hospital I am visiting is a world-class teaching hospital with a leading colorectal department. Plus, I sought a recommendation from my previous surgeon in the UK, who recommended this hospital and particular surgeon. I will seek out a second opinion, though, as the first comes from a gastroenterologist, not the surgeon, but in terms of quality of life, I suppose there are little options.

I really do appreciate you all taking the time to reply to me, so thank you. It's good to know that there are excellent experiences out there and I'm not alone. Not speaking the language here is tough, especially in healthcare. Lots of professionals don't speak English, so it's a bit of a miming game sometimes!

If they don't speak English, just learn enough to say, "I don't want another J-pouch."

IGGIE

Hi.. just wanted to mention the word interpreter.

Not sure of requirements in different countries but the hospital should have access available to people who don't speak their native language.

You could inquire about a voice interpreter and if they are available. You should not have to pay for this service of interpreting.

Miming?? That's funny. Gestures??

In case where you get bad treatment because there are no interpreting services, can you sue??

I understand you could use your phone to interpret as well.

There are apps for this.. give that a try. Likely won't work in the operating room. An interpreter would be allowed.

Just saying. They work for me.

Ha! I can't have another pouch even if I wanted one. I don't have enough bowel left after two! But great post, thank you. Made me chuckle :-D

Good suggestions, thank you very much.

Sending you good vibes, and I hope you will be satisfied with your end result. Please keep us up to date and come say hello from time to time.

Regards, IGGIE

Hej!!! No experience of a J-pouch, but a fellow Ostomate here in Stockholm. I have a permanent ileostomy.
Always up for a chat/fika and the likes.
Hope all is well!