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Hello all! I had the 3-step procedure in 2001. Fast forward to 2015 where I started having chronic Pouchitis. From there it would flare up once in awhile. And then to the point I had to take Cipro daily to prevent it. Fast forward again to 2017 where I started to notice stool on the toilet paper when I would wipe my vagina on the toilet. At first I wasn't sure that was the case. Maybe because things are so close down there I was mistaken. 2020 it was confirmed I had a recto-vaginal fistula. And where it was, if they tried to repair it, I would most likely have incontinence issues. So diaper bond. My options where to try Remicade infusions to see if that could help close up the fistula. Last option would be to rid the J-pouch and have it taken out. And have a permanent Ileostomy. To be left with what they call a "Barbie Butt" because the anus and pouch to be taken out. And bottom sewn shut.  I opted to try the Remicade infusions. Wanted to give it my all and try all that was handed to me. Well, the infusions left me feeling tired and nauseas. And we saw no real change with the fistula. So I had to make another hard life changing decision. Either live with this fistula, that was unhealthy and could cause infection or worse. Live with poo coming into my vagina randomly. Which was super gross. Or get the permanent Ileostomy, no longer having to be on Cipro daily, no more butt burn, no more urgency, no more stomach pains and gas. No more leakage. So July 12th 2021 I had the surgery. It was not an easy surgery. Especially since now I am in my 40's. And when I had an Ileostomy before I was in my 20's. Today I am all healed up. Feeling better then I have in years. Ya so I may poop from the front instead of the back now. But I can't tell you, I feel so much better physically. I named my stoma Bertha. Because in the hospital there was a 5 day period that things were not passing through. So I felt like I was in birth from the stomach cramping I was having. Hence her name Bertha. LOL. But just wanted to share my story. I have logged onto this support group through the years. And I cannot tell you how much it has helped me through the years from the very beginning. So I thank you all! <3

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Hi Mamacakes!

I can't thank you enough for your post. I had a ONE step (traumatizing) jpouch surgery in 1997. I've had 21 years of chronic pouchitis (triggerd by pregnancy?) switching between Cipro/Flagyl. Inexpressible misery. I started Remicade today as a last stop before ileostomytown. I am thrilled that you are feeling better and am inspired by your story. I have the option to do a loop ileostomy (to go for a test drive since I've never had a "Bertha" of my own.") If you were me with a "clean" surgical field and Remicade doesn't work. Would you just go for the permanent ileostomy (assuming no pending cure for pouchitis) so I don't have to have a redo after the loop?


1-Step 1997 Chronice Pouchitis 21 years, 2 pregnancys/sons by C-section

Yes, thanks Momacakes for sharing. I’m just shy of a year since takedown and this pouch has never worked. No fistula but a sinus tract, floppy pouch (I don’t even get this and I’m in the medical field ;-), and descending pelvic organs. I’m sick of the enemas and cervical splinting and endoscopic procedures just to struggle to empty. And now the back pain with possible infection. I felt so much healthier with the bag. Ate everything, slept through most nights, put on weight. There’s just so much trepidation surrounding knowing when to throw in the towel. I wish I had just stayed with the end ileo after colectomy and skipped this F&$king pouch. It has permanently altered my internal organs beyond my GI tract. Anyway, sorry to highjack your rant. Congratulations on making the leap and recovering! Can you tell me what the recovery time and process was like for you? I’m also in my 40s and have PSC so wracking up surgeries is worrisome if I ever need a liver transplant. But don’t know how much longer I can keep this thing.

I am really sorry to hear that you lost the J Pouch after 20 years but am glad to hear that you seem to have adjusted well to the ileostomy. After 30 years with my J Pouch and 27 years battling Pouchitis, I am hoping to avoid a similar result, but at the same time it's good to hear that the last resort option is livable.

Your story about "Bertha" brought back in an unusual and long forgotten childhood memory. As a child in the 1970s, I used to build model rockets sold in "build it yourself" kits by the company Estes. Their signature model rocket was "The Big Bertha". I did a Google search and much to my amazement, over 50 years later, Estes is still making "Big Bertha":

Last edited by CTBarrister

Honestly - do any pouches work!! A surgeon admitted to me that most begin to fail at the 20-year mark due to chronic pouchitis. I had mine for 18 years - that was 18 years of abscesses, fissures, fistula and always thinking about where the next toilet was located...and finally losing all control and having to wander around in an adult nappy post my daughter's birth. I'm so glad I went back to my stoma!

Thank you! I have been fighting with local surgeons about this. I had an illiostomy at 19 (1992) and had to decide on a Barbie butt or try a jpouch in 1998. 24 years later and I have so many secondary issues and health problems - including another prolapsed bladder from having to bear down to empty my pouch. I am so sleep deprived - my kids woke me at night way less then my pouch does - I haven’t had more than 3-4 hours of sleep in a row. I had tp work from home for years and I MISS the full nights of sleep and ability to get out and do life. I have. Another 20 -30 years of life to live and I can’t keep doing this.

my father (age 75)  has Parkinson’s and we can barely get him to a washroom - I can’t imagine what it would be like trying to get him to the toilet 5-10 times a day - he would simply be in a home in diapers because there is no care centre that would be doing that and my mom surely couldn’t.

These aren’t things we think about when we are 22 - the freedom of no bag seemed a bit more important but I wasted my 30’s and most of my 40’s. it is time for me. I would LOVE to connect to anyone with UC who has reversed back to and ileostomy and gave up their pouch after the age of 40

Thank you for this thread. It has been something that is on my mind so often. Whether to throw in the towel and have a permanent stoma. I am always so aware of my backside. Every twinge and tweak I am wondering if I'll have another blockage or sleepless night.

I would love to sleep through the night. But I don't know if I am ready to deal with "Patrick" again.

So glad to hear you're doing well, mamacakes.  Deciding between dealing with fistulas and going to a permanent ostomy is not an easy decision.  I fought with fistulas/abscesses and more for too long and had my jpouch removed as well, 5 yrs ago.  And -  yes - I named this last stoma Bertha as well!   Here's to feeling well and living fistula-free.

@n/a posted:

So glad to hear you're doing well, mamacakes.  Deciding between dealing with fistulas and going to a permanent ostomy is not an easy decision.  I fought with fistulas/abscesses and more for too long and had my jpouch removed as well, 5 yrs ago.  And -  yes - I named this last stoma Bertha as well!   Here's to feeling well and living fistula-free.

How have you been finding life without you j-pouch?

@Scatty posted:

How have you been finding life without you j-pouch?

Doing great without jpouch.  I haven't seen a GI or CR Surgeon in 5 yrs, as I have had no problems.  I am retired, so life with the bag isn't too disruptive.  As always, there's a trade-off with having the bag, but to me it was definitely worth it to be fistula-free, able to sleep nights, no accidents, no pain!

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