I am about to go to the Cleveland clinic for pouch problems and wanted your thoughts. Did your small bowel get enlarged or have trouble with obstructive outlet dysfunction around the pouch or anastomosis? I have had 5 major surgeries that only partly helped and now it looks like it could have been my pouch all along. thank you for any insights and here is my post link with more info on my case... https://www.j-pouch.org/topic/j...-as-large-as-a-colon

how are you feeling now? take care

Hi team, 

Just checking in as I know there are very few places to read about people who have had pouch re-do at CC.  I am a little year after my last surgery and am doing so well I forgot this site existed until I got a PM!  These surgeries were some serious business but they seriously improved my quality of life and I am eternally grateful for Dr. Ashburn for the hours she spent with me and the CC staff for all their support.  Happy to help anyone out who might have a question as best I can, although of course everyone's experience will be different.

Hopefull11, I came across your post and glad you are doing well. I'm in the process of a redo with Dr. Remzi (excellent surgeon)@NYU. For the last 3 years,my j-pouch was enlarged,strictured,peri anal fistula,chronic leakage and kept me from a good quality of life. I'm 3 1/2 weeks with the ileostomy and already feel great relief from all the bathroom trips. My question to you is was it hard to decide to reverse back to the j pouch? I'm having mixed feelings. What if I go through the next step this summer and then I experience same problems. As a side note, my other NY Mt Sinai Dr's said I had Crohn's disease. Which was weird I was never  sick. Dr Remzi agreed with me, it's all mechanical. So happy you posted a good outcome follow up. ��

Funny, this is exactly what I heard from Dr. Remzi, "it's mechanical.  I can fix it."  I had four years of surgeries (original poster above!).  I had had enough and had resolved myself being happy/healthy an ileostomy.  However, since I was able to have Dr. Remzi perform a redo, and I had good insurance -- Obamacare (ACA)  - no longer going to sit by without making people understand that good insurance for those of us with pre-existing conditions IS very, very important -- I decided to give Dr. Remzi a shot.   If his redo didn't work, I could still have another ileostomy! 

Very happy I had it done.  I am 56, pretty darn good health an truly do feel I am "normal" in almost every way!  To answer your question, Dr. Remzi said he could fix me and I trusted him.  Happy I did.  

I'm struggling with severe cuffitis and am waiting on approval to begun Stelara. My cuff is tiny and less than an inch in length in the first place but the surgeon told me stelara gives me a 50% chance of remission (10% better than remicade) and if it doesnt work then I may need an end Ileostomy...im 27 and not married yet and really don't want a permanent Ostomy. I was told.pouch advancement or Pouch redo is not an option for policy with chronic, refractory cuffitis. Anyone know anything about this or what Dr. Reminder might be able to do?

Jeane,

My j-pouch was bypassed to a permanent ileostomy to give me more options. I decided to have it removed 6 months later. Our problems were very similar. In my case I didn't want more operations to make or fix my pouch...enough already. Plus I was 60, if younger I might have made a different decision. The ileo isn't like being normal but is close enough for me. 

J Moons, who told you that "pouch advancement or Pouch redo is not an option for policy with chronic, refractory cuffitis?" Pouch advancement (with mucosectomy) is commonly done for cuffitis that can't be controlled with medication. It removes the cuff. Both pouch advancement and pouch re-do should only be done by surgeons who at experienced at the procedure. If I needed either procedure I'd go to New York to consult with Dr. Remzi. Perhaps there's someone closer to you at Duke with the right skills. 

Dr Remzi refused to do a pouch advancement on me due to my chronic stricture  and cuff issues.  His only recommendation was ostomy for 6 months and then for me to decide whether permanent or opt fot complete pouch redo. My Yale surgeon is willing to do pouch advancement.  I guess it depends on the surgeon. 

This is definitely not "one size fits all." There will be differences of opinion, partly because no two pouches (or pouch problems) are exactly the same. 

F Scott, 

What do you do for work? I always find your responses knowledgeable. I asked Dr. Koruda about Pouch advancement and he said my cuff was intentionally made so small and the only remaining portion of it is severely inflamed with cuffitis so a pouch advancement would not work because there would not be anywhere left to attach the Pouch to? My Pouch looks pristine though (other than the cuff). 

Pouch advancement would generally be done with a hand-sewn connection (instead of stapled). The attachment is a quite delicate surgical technique, thus the need for an experienced surgeon. If you're suffering with cuffitis then the cuff (or at least the mucosa) has to get calmed down with medication or removed. As Jeane points out, not all situations are goood candidates for pouch advancement.

J Moons,

Only the most skilled and experienced surgeon will be willing to do a pouch advancement when your cuff is already very small. That said, a j-pouch attachment directly to the anus with no rectal cuff can be done. It just is not the common or preferred option. This is because there is a high risk of incontinence complications without some rectal cuff (all the nerves of continence are in that area). They can leave a tiny rectal cuff and strip the mucous membrane (mucosectomy) to reduce risk of continued cuffitis, but that also risks continence. So, perhaps your surgeon feels it is not an option, but maybe a second opinion is in order.

In Jeane's case, her cuff is further complicated with fibrotic stricture. If Dr. Remzi has ruled out pouch advancement as an option for her, I'd believe it. He has oodles of experience with surgical pouch salvage.

Jan

I had the fibrotic stricture problem.  My diseased cuff kept making strictures that came back after balloon dilations during scopes and a surgical stricture removal.  My cuff was making them.  Plus I had chronic pouchitis with chronic cuffitis so even if the cuff was gone I'd still have the pouchitis. Advancement wasn't an option. 

Good luck, Jeane.  Very difficult decisions to make.  Either way, I hope whatever you decide, things turn out well for you.  From what you have written, you have certainly been going through way too much!

Thanks CTB23. I should have done this three years ago. 

Please let us know what you decide jeane.  I feel for you as whatever you choose you will be going through major surgery.  If you have any questions regarding removal or the ileostomy please ask.

Jeane- I'm hoping you don't have to suffer much longer. I met with Dr Remzi yesterday. He is the only surgeon that truly understood exactly what my 'deal' is. Other NYC Dr's were treating symptoms. Never actually doing any tests to show a pouch that looked like a huge O, that wouldn't empty leading to a fistula. DX' d me with Crohns. Though I didn't feel sick. I've had ileo for 4 weeks on no meds and feel such relief from the stricture,fistula,leaking and 20+ bathroom trips a day. In 5 mos. he will do a new one & is confident it should have a good outcome and hook up 3 mos after that. I now get why he wants it to rest. I also was at the end of the line (practically home bound)and it wasn't fair to my husband of 26 yrs. to not change my situation and try to improve it. I'm also loving eating most of what I couldn't before. Dr Remz said  watch your weight, your going to want to eat all the time. Just an added bonus. He asked me do I want to keep ileo or go ahead with the redo. I couldn't answer. Ofcourse I'm scared to death it won't work. I also stopped meds a few years ago as it was only a temp fix and wasn't helping my issues that were mechanical. The decision is a hard one to make.  I do wish you luck and a speedy recovery. Please post any follow ups as I am in same situation.

Aka - knklhead- I am relieved to read your post that a redo has benefited you. Though my previous Dr's were very conservative with my pouch problems it wasn't until I went to Dr.Remzi that he knew exactly what was wrong. All mechanical. No more guessing. He's seen what I've had wrong with the pouch and basically there is a lot of pouches that weren't done right. Even though I went to leading NY surgeon 19 yrs ago. It's led to strictures,fistulas and leakage. Numerous stricture dilation, remicade infusion did nothing. It wasn't  crohns. I'm glad I have the temp ileo it gives me a chance to get my head in the right frame of mind to move forward with whatever decision I have to make. Thanks for posting your outcomes, it is so helpful to read positive responses.

Glad it provided a bit of insight.  The interesting thing about "feeling good" with an ileo helps you to be comfortable that you know it is always a fall-back for  you.  Dr. Remzi knows enough about what we go through to get us healthy to make an education decision before plowing forward.   It is GREAT that you are so positive with the "ileo break."   Take the break, enjoy, relax, feel good and you'll make the right decision for you.   By the way, when I had my "ileo break" I was on vacation with my family and enjoying underwater "snuba" among other things.  I had to wear a shirt.  

.. oh, and he's right. There's something about one's appetite when they feel good. Enjoy, but watch out!  I was at 165 lbs and "grew" pretty easily.  If you can, use the extra energy to get some extra exercice if you can before the next surgery and it will be helpful for recovery!  

Njshoremom

I am happy you found ,Dr Remzi. He is awesome. Best of luck to you. I'm confident he will help you. 

After I see the Yale surgeon I will decide if I  iwant to try the advancemebt or go back to Remzi for rest and re do.  Do you actually have crohns or is the fistula from your mechanical issues and stricture? 

Jeane-  I'm pretty sure my fistula is the problem. I had ulcerative colitis before jpouch. So I only know those symptoms. I felt like the flu all the time. I didn't feel sick this time. This time I just felt aggravated getting zero sleep with the fistula,stricture, and straining all the time. Ballooning the stricture was doing nothing because jpouch wasn't working because of the way it was originally done. I think it was the originally surgery(nyc) back in the day that did it. Not done the way Dr R does them. So happy for Dr R.  - he seems to know what they did wrong & will change the pouch to better the outcome. Good luck with your important decision. For me taking no medication (not even Tylenol)is worth having the Ileo.

Aka- knklhead-  Happy to know swimming didn't interfere with ileo.  We take a lot of vaca's. Especially Fla, beaches( going in April)I will use that tape on ileo. I wanted to know if the second surgery had an impact on you and for how long? Dr R said it's much more difficult than the first? I was up & about by 3 weeks with first surgery. Afraid part 2 will throw me for a loop. I know I should put that in the back of my mind & not worry. My son is getting married 12/17 & just want to feel normal. His fiance's shower will be a few weeks after part 2. How was second surgery for you?

I do get a slight leakage from anus, did you get that? Does it get less? At least it's not irritating like before.

My fistula is still there. I was hoping it would shrivel up and die, Dr R said it doesn't necessarily go away, and he will address that in part 2. Did you have any fistula issues?

So sorry for all the questions. I appreciate any responses as we both had mechanical issues. Dr R said my fistula formed because my jpouch was filling up & the stricture  kept it from emptying and the waste tunnelled out the only way it could. Thank you for helping.

NSshoremom:  I'll be honest, I don't remember the recovery much after takedown -- I work from home -- sort of unfair, and I have my  own schedule and, more importantly, access to the bathroom!  I would probably say that after a few weeks I was in pretty good shape and could get out of the house normally, attend events, etc.  I would say in ten months you will be in very good shape.  And yes, I still get very slight leakage from time to time, mostly if I eat something I shouldn't or when I recently had the flu and diarrhea, but I still wear liners just in case. It is not a bad problem for me.  I don't have any fistula issues.  There's no guarantee, but I think the wedding is a good goal that will help mentally and physically encourage you!  You'll nail it!  

Follow up to anyone trying to decide on a redo of pouch or a perm ileo, or in between the two. I went out for a walk on the beach with my dog and then later on a festival at a winery.  I was out for hours with no worries about using the restroom or limiting my activities to just one of the two. My ileo is 5 weeks old.  I looked at the long lines for the bathroom and was so grateful I didn't need to use it.  So happy for the little things that make me feel normal. Talk about getting a break from all that restroom going and never being comfortable anywhere. 

Njshore mom, 

My fear is a fistula due due to the stricture. How do you know you have one aside from leakage? 

Jeane,  About 3.5 yrs ago my jpouch really went haywire. My Dad was dying, we own a business and I have 3 sons (2 were in college,1 in high school). I ended up getting shingles and noticed I was having really hard time emptying pouch. For me turning point was on a vacation where it was leaking only when I lied down to go to sleep, I could feel it slipping down the pouch and it was so hard to hold it in. If I sat on toilet it wouldn't come out. It was so annoying! That never happened before.I also felt so much pressure and pain from all the straining. Went to my GI Dr. He suggested it was strictured, went to surgeon,scheduled procedure. When I woke up I had a seton. Dr. said it is a Perianal fistula. He said you most likely have Crohns. He was also my original pouch surgeon. It is located on my right side near vagina. What I thought was a pimple ( it was pink,small and round)was actually the fistula. The seton was so uncomfortable that I asked him to remove it a month later. By then, it was open and draining. For me the draining is only if I press on it. Tried a year or so of remicade cleared up for a few months but never went away. It has a tract that feels like a thick piece of yarn. It cuts through the muscle down there interfering with my ability to hold it in. That's when the leaking got progressively worse. It's still there but Dr R will address that in the summer surgery. I sort of think it's here to stay. It baffles me that it won't just go away. That is why I knew it was mechanical and glad to finally have a Dr who knows what I was going through. Did you get an MRI in the area ? Can you feel a thicker under the skin bump? Compared to other side. That's how I knew it was a fistula. Sorry if this is so long, I wanted to give as many details as possible. I felt in the dark about my issues at the time because my Dr's didn't diagnose me correctly.  So hard to explain because it's not that common. It's like the constant explaining of a jpouch to the nurses 20 yrs later that work in the GI office. There is 10 GI  Dr.'s in the group. I've been going there for 24 yrs,  Hope this helps.

Njshoremom, how does your pouch look aside from the fistula? You mentioned the doc said it's probably Chrons. Do you have inflammation in your pouch that points in that direction? 

BREWBIRDS-  My pouch biopsies over the years were always good. No problems. My last few years seemed to be an enlarged pouch (looked like a circle) & having a stricture, wouldn't empty properly.Then the fistula formed. My old Dr's assumed crohns.  I kept insisting it was mechanical. I went on remicade for 1.5 yrs, didn't fix anything. It was so frustrating. I know it's hard to figure out what's wrong with jpouchers. When I had  ulcerative c. I had pain, with the stricture,enlargement of pouch no pain. Just anal pain from all the straining. In the j pouch rebuild stage, hope it works.