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Good morning everyone, I am a long time member of the forum but have never posted. I was diagnosed with UC in 2007 and was put on Remicade immediately. Remicade put me in to full remission for 5 years.  I decided to discontinue usage because I was concerned with potential side effects (cancer).  In 2015 my UC came back with a vengeance. I was put on Remicade again but it had no effect.  Also tried Humira and entyvio, but neither seemed to work.  In 2016 I had my j pouch surgeries. After my first surgery I felt remarkably better other than having the temporary ostomy. Almost immediately after my final surgery (takedown) I began experiencing what I can only guess was pouchitis. Gas, churning, urgency with watery stool, and just a bad overall feeling. My surgeon prescribed Cipro after about a month of this and it had an almost immediate effect in calming my gi tract. I began to feel better and have “firmer” stools. Since then I have been on and off cipro and flagyl.  Well, as if I haven’t dealt with enough gi issues I was diagnosed with stage 1 duodenal cancer in October of 2020. I am blessed that it was found so early. But, I had to have a very extensive surgery called a Whipple procedure. The surgery removes part of the pancreas, gall bladder, duodenum, and a small part of the stomach.  After the surgery I lost nearly fifty pounds and am desperately trying to maintain/gain some weight back. My “pouchitis “ symptoms did not flare up in the first couple of months after my surgery (Nov. 2020), but have come back over the past few weeks with a vengeance. I don’t feel like my cipro/flagyl combo (500mg/2x per day) is working anymore.  I was seriously considering having the pouch removed prior to my cancer diagnosis, due to the constant pouchitis/cuffitis that I was dealing with. Finally my question is; has anybody on the forum had a Whipple and a j pouch?  If so, how has your quality of life been since? 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 am 48 and work For a police department (fortunately office work), and I need to make at least one more year to get a full retirement. So, I’m having to factor that in my decision as well. Thanks for any and all insight or advice that you might be able to give me.

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@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

Last edited by Lauren Of Emerald City

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.

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.

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

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