J Pouch Removal?

@Jrt1352 Wow, you’ve been through a lot. I’m sorry all that has been thrown at you. I haven’t had a Whipple, but I’ve dealt with chronic pouchitis for about 13 years. I don’t think your weight loss has much to do with the pouchitis - most nutrients are absorbed before the intestinal contents get to the pouch. If the pouchitis is causing you to change your diet (i.e. eat less) there could be an indirect effect.

Have you tried other antibiotics for pouchitis? Rifaximin (Xifaxan) works well for some people and has few side effects, though it’s very expensive. Tindamax is another one that people have had success with. If I ran out of antibiotics to try I’d move on to a biologic. I don’t think past failures of biologics to control your UC are reliable predictors of likelihood of success treating pouchitis.

J-pouch removal can be a complicated surgery, particularly in an abdomen as tinkered with as yours is. If you find you have to go down that road I suggest you choose your surgeon very carefully. Experience in creating J-pouches isn’t the same as experience removing them.

Good luck!

I am sorry for all of your trouble!

For your last question: Finally to those that had their j pouch removed, are you satisfied with your decision and how has your quality of life improved/diminished since removal.

I would strongly recommend to reach out to mysticobra. mysticobra had his J-pouch removed also and often talks about his quality of life after J-pouch removal. I would suggest sending him a private message and asking him. He will give you lots of support.

Best of luck my friend

While mystricobra can give valuable information about going from a J pouch to a conventional ileostomy, I can provide information about going to a continent ileostomy (BCIR) which gave me a very good quality of life. Check out the article I published in UOAA's magazine, "The Phoenix" which has the link: https://www.qla-ostomy.org/wp-...chingMyOptions-1.pdf

Thanks Bill, but I think I’m done with internal pouches/reservoirs. I’m just ready to have the ileostomy and get on with my life.

I sent mystic cobra, does he still come on here?

@Jrt1352 posted:

I sent mystic cobra, does he still come on here?

@Mysticobra checks in occasionally. He was certainly glad to be rid of his J-pouch. You can also use the search function on this site to find his past posts - he’s shared his story generously.

Thanks Scott. Hopefully he’s out living his life to the fullest.

@Jrt1352 posted:

I sent mystic cobra, does he still come on here?

Perfect! I hope he replies soon! Good luck dear

I'm currently in the process of having my jpouch redone.

Redone or removed?

So sorry you've been tbrough so much.  You sound like a very strong person.  I had my pouch removed 2.5 yrs ago.  I lived with it for 25 yrs.  Am healthy and doing well (other than yet another possible fistula).  Have you looked at the ostomy forum here?  There are a number of us who've gone thru removal.  I'd be happy to answer any questions for you that i can.

Thanks for your reply.  I’m really just wandering if the churning, gas, and urgency that I feel more times than not with the pouch will be gone with the ostomy. I know it’s a big trade off, but I remember feeling so much healthier and energetic with my temporary ostomy between j pouch surgeries.  Thanks for any advice.

Did Mysticobra reply to your message???

He did. Thanks.

@Jrt1352 posted:

He did. Thanks.

Your welcome dear

@Jrt1352 posted:

Redone or removed?

Andrieta is getting it redone.

@Former Member posted:

Andrieta is getting it redone.

Correct. He actually says my jpouch itself is still viable but I had a permanent obstruction from my rectum. It is too long and caused problems. He will attempt to fix it and reattach

If it doesn't work I'll have an end ileostomy and call it a day

@Andreita posted:

Correct. He actually says my jpouch itself is still viable but I had a permanent obstruction from my rectum. It is too long and caused problems. He will attempt to fix it and reattach

If it doesn't work I'll have an end ileostomy and call it a day

Sorry to hear that. Hope everything works out! Keep us updated

Hi, Jrt1352

I’ve had 2 previous Jpouchs and lastly a Kpouch removed almost 2 months ago. A few little glitches, mostly dehydration and finding the right fitting products.

But I am the happiest person around now!! Wish I would’ve have insisted on having this done 2 years ago at least.

As for your question on gas, gas has to go somewhere, and it’s in the bag. And , pun intended, I’m full of it! Different bag can allow you to let the gas out without emptying the entire bag, all very manageable.I am still early into this so I have heavy output bags, when I had normal ones, it was more of an issues.
Again, I can not tell anyone how much I am at peace with this decision, my life is mine again.

Good luck to you in your decision.

Jan

@JanW2 posted:

Hi, Jrt1352

I’ve had 2 previous Jpouchs and lastly a Kpouch removed almost 2 months ago. A few little glitches, mostly dehydration and finding the right fitting products.

But I am the happiest person around now!! Wish I would’ve have insisted on having this done 2 years ago at least.

As for your question on gas, gas has to go somewhere, and it’s in the bag. And , pun intended, I’m full of it! Different bag can allow you to let the gas out without emptying the entire bag, all very manageable.I am still early into this so I have heavy output bags, when I had normal ones, it was more of an issues.
Again, I can not tell anyone how much I am at peace with this decision, my life is mine again.

Good luck to you in your decision.

Jan

I'm not clear in this. Do you have an ileostomy now?

Andreita ,I am sorry, just saw this tonight. Yes, I do now have an end ileostomy.  I feel better than I had in the last few years and just last night actually slept 6 hours! That has not happened to me in decades.

Still am adjusting to what foods I can eat and keeping hydrated,but each day is just so much easier and I am so grateful for this surgery.

Jan, what were some of symptoms/issues that you were having with the pouch?

Hi again, my last pouch was a K pouch and I had a lot of issues with intubations and having to do that at least 12 times a day in my case. From prior surgeries I had a lot of adhesions that added to the problem and caused a lot of pain throughout  the abdomen and entire pelvic area.               I was very limited on what foods I could digest that could exit through the catheter.Also much difficultly in emptying my bladder, had to contort my body to  empty myself of both waste products. Weird, but I’ve heard others have had to do the same.                                   Really just glad to bedone with that. Getting used to the ileostomy is easy, just still trying to get the best fit for me, going along good and then boom, a leak, but still just been a short time. I’m really soooo happy with this decision!     Happy 4th of July Everyone 💥🇺🇸

@JanW2 posted:

Hi again, my last pouch was a K pouch and I had a lot of issues with intubations and having to do that at least 12 times a day in my case. From prior surgeries I had a lot of adhesions that added to the problem and caused a lot of pain throughout  the abdomen and entire pelvic area.               I was very limited on what foods I could digest that could exit through the catheter.Also much difficultly in emptying my bladder, had to contort my body to  empty myself of both waste products. Weird, but I’ve heard others have had to do the same.                                   Really just glad to bedone with that. Getting used to the ileostomy is easy, just still trying to get the best fit for me, going along good and then boom, a leak, but still just been a short time. I’m really soooo happy with this decision!     Happy 4th of July Everyone 💥🇺🇸

Glad your well hone! Happy 4th to you too