J-Pouch Revision Updates

Hello!! Congratulations on finding the best surgeon out there to fix the faulty pouch. I had a 3-step series back in 2010-11 and my surgeons at Duke made me a S-pouch, due to a j-pouch not reaching far enough into the pelvis. It was a disaster, it never worked properly and I was sicker than I had ever been. Found Dr. Remzi later in 2011 and he diagnosed a long efferent limb, which perfectly explained my symptoms (Duke surgeons just dismissed it and offered no explanation, other than "maybe you need physical therapy." Boo. Anyway, he diverted me to the loop in Oct 2011 and I stuck with it for 5 years, moved twice, had a baby, and felt great. In June of this year I returned to Cleveland and Dr Remzi excised the S-pouch (confirming that it was a botched job), built me a lovely j-pouch with no reach issues whatsoever. I just had my takedown at NYU a little over 2 weeks ago and it's working pretty well, certainly a ton better than my first one did! Of course I don't expect things to be working perfectly for a while but I really feel well and am so encouraged. 

Dr. Remzi examined the pouch during surgery and I had a stricture so he went ahead and dilated it. He does think I will need to come back and have it dilated a handful of times over the coming year, expecting that the first would be about 8 weeks after surgery unless I need it sooner. I can tell it's a little tight but I'm hanging in there for now. He was adamant that he didn't want anyone else trying to dilate it, he apparently also has a cohort of patients who came to him following major bowel injury from dilation by other providers. It's crazy expensive and inconvenient to travel to NY for all these procedures but I've had enough of things getting messed up by surgeons I should have been able to trust. Dr. Remzi is a wizard, your husband is in fantastic hands. I would follow him anywhere and am reluctant to let anyone else touch me now! Good luck! 

PS, hotels aren't cheap, but I had a good experience staying at the Affinia Dumont on 34th St. between 3rd Ave and Lexington. It's about 4 blocks from the hospital and really close to other fun things in NYC, since they have you come for pre-op a few days in advance you will have time to play a bit before surgery. It's 2 blocks from the Empire State Building, my mom and I went to the top (with tons of crazy lines and on my feet for a long time) just 2 days after surgery!  

Well, after four years of issues and six surgeries, the last two (loop redo and then pouch redo) were done by Dr. Remzi in Cleveland.  Anyone that gets to be a patient of Dr. Remzi is very lucky.  I am over a year out from my last redo with him and feel fantastic.  As I like to say, "I feel like a normal human being!"  I don't have any restrictions on my life, really .. bike-riding,  coaching/playing basketball -- you name it.  Best wishes to you and all the others on getting the best quality of life possible!

I wanted to add, I think the second surgery was not too bad -- just have to give your innards a chance to heal up and start functioning.  I didn't need pain meds, personally.  I was sore, but happy to give my new pouch a shot.   I also recommend a bidet and/or Sensacare to try to keep the bum from getting sore and irritated.

Thank you so much for writing, that is just the information we were hoping to hear!  Jim also has a stricture that has been causing as much trouble as any of his other problems.  He has had many dilations and therapy that was of no help to him.  We're hopeful that Dr. Remzi will be able to help.

Thank you also for the hotel recommendation, the Affinia Dumont is one I was considering and will definitely reserve with them now!

Good luck with your recovery, hoping it is speedy and uneventful!

Thanks again for writing, we really appreciate your input and support!

Della

Thank you for the update Knklhead, I remember reading your previous posts and am glad to hear you're doing so well since your last surgery!  It's good to know the second surgery wasn't too bad for you, we know it won't be a picnic but have been a bit concerned about the flight home.  He'll be happy to get this one behind him.  After this revision on Dec 1st, his takedown (hopefully final takedown & surgery) will be scheduled in March.

Thanks again to both of you for writing, we appreciate it greatly!

Della & Jim

Very welcome!  You are in good hands!

I had my redo my Remzi last year and take down this past March. Besides some minimal leakage I feel pretty good and doing ok. I am having a hernia surgery though ina few weeks that is where the ileostomy was closed. I obviously wished I did not have this leakage cuz without that I think I would feel awesome about everything. But would rather have this minor annoyance than a bag 

Wanted to add one more thing... overall I am very encouraged by my recovery process and feel like things are going as well as could be expected. But the afternoon I was discharged from the hospital I was utterly miserable. The surgical pain was already subsiding, and I was off pain meds entirely, even OTC, within a week, and I usually really struggle with post-op pain control. But the gas. Oh my. That afternoon I thought I was going to end up back in the hospital. I couldn't move, it was so painful, and it's hard to get your body to expel it efficiently. And it's one of those problems that you wonder how it's going to get better... where does the gas GO? Still don't really understand that. But this is not to scare you, but to encourage you... it seemed to peak at about 2-3 days post op, but it subsided very quickly, and by 1 week out it was much better, still a bit bloated but nowhere near as painful, and by 2 weeks it was pretty much gone entirely. So if he has some extremely uncomfortable periods in that first week, don't worry too much, it DOES subside, and for me it was really pretty quick. Just a heads up! Just make sure to take eating and drinking VERY SLOWLY and chew really well, paying close attention to how things feel as you go. He may only be able to take a couple bites of food at a time at first. Taking it slow will minimize the crampy pain and nausea that are kind of inevitable in those first days. He will be feeling better before you know it! 

Thank you for taking the time to write, we appreciate it!

Pouchomarx- Is your leakage daily or when sleeping? Jim is looking forward to being rid of his bag too.  Good luck with your hernia surgery!

Boogiemomz - Thanks for the reminder about gas and taking it easy on food ... It's shocking how incredibly painful gas can be!  I feel he was given the go ahead to eat too much, too soon last time.  It's scary after getting home and so far away from the hospital to have problems.  We appreciate hearing your timeline and encouragement! 

Thanks again for the help!

Glad pouch brought up leakage, just to set expectations.  I would have to say that he should expect leakage, but it will get better and better with time.  I am out over a year now and leak pretty much only when my diet is horrible.  And I have been sleeping through the night.

I also have night time leakage, but taking Pepto. at dinner and 2 Immodium at bedtime has helped.  I am just about 3 mos. out fro takedown and was a little discouraged with this at first but it is getting better.  I was also instructed to keep up on Kegels.  

Ah, I forgot you said it's the revision surgery coming up, not the takedown, which all my above advice was referring to, sorry! Well of course the revision is a much tougher surgery and tougher recovery. I was SO anxious and scared before that surgery, and I was fully prepared to wake up with a permanent ostomy because he hadn't been able to fix mine. But the news was much better... it went perfectly, didn't even take him very long (about 3 hours, they had slated 6). Dr. Remzi will take wonderful care of him, he really is the best there is. The recovery is hard but he will get through it and then takedown will seem like a walk in the park! Best of luck and keep us posted!  

Thank you for clarifying, we appreciate all of the information and encouragement given! 

JsWife posted:

Thank you for taking the time to write, we appreciate it!

Pouchomarx- Is your leakage daily or when sleeping? Jim is looking forward to being rid of his bag too.  Good luck with your hernia surgery!

Boogiemomz - Thanks for the reminder about gas and taking it easy on food ... It's shocking how incredibly painful gas can be!  I feel he was given the go ahead to eat too much, too soon last time.  It's scary after getting home and so far away from the hospital to have problems.  We appreciate hearing your timeline and encouragement! 

Thanks again for the help!

 

yes its daily, its been 7 months since being reconnected. I square up a few sheets of toilet paper and stuff it up against the anus. I just change out when I go to the bathroom. Sometimes there is a very small stool spot sometimes not. more times not but use it as precaution. I rarely have leakage at night unless I eat just before bed, which with my schedule, I tend to eat later. I know my diet needs to improve, so maybe it will decrease even more if I watched, but I love food too much..lol

hernia surgery is scheduled for Nov 9th, its very small. half size of golf ball. Using an onlay procedure with synthetic mesh. short procedure and very minimal risk to intestine and jpouch. said a 5-10% risk of reoccurence

Thank you for the information, it's so helpful to hear details of what to possibly expect.  Haha... my husband loves food too!  I know it's such a fine line and a matter of trading one issue for another.  :-/   Hoping for a better outcome than what he has been dealing with... hoping the same for you as well!

Thanks again!

I had my j pouch done in 2011 after a couple of years of dealing with what seemed to be pouchitis I decided to go to NYU to meet with Dr David Hudesman Professor of Gastroenterology to consider a permanent bag at that time I was going 15 -20 times a day he did a full evaluation I entered into a study which I failed out of and concluded that he thought my pouch was failing  . He informed me that Dr Remzi was transferring to NYU and suggested I get him to take a look at my case after a bunch of test he confirmed the pouch was no good and felt a redo was a option . My first surgery was OCT 20 2016 back to the bag for six months to let every thing calm down and get some rest hated the bag but the break from my pouch was good .My second surgery  was APRIL 18 2017 to construct a new pouch . That surgery was a little tough but the care at the hospital was good pain management was good. My reconnection surgery was JULY 25 2017 seven weeks ago . I am very happy with the outcome and pray things stay as they are I go about every four hours which is good. Leakage depends on diet I am just trying to learn how to regulate my new pouch. All things considered in that I was going to NYU for a permanent bag things were that bad and to by chance meeting  Dr Remzi  I am very grateful. At this time I feel like I am on my way to getting my life back .Hope today is as good as yesterday. His staff were all very good as well as the nurses at NYU. I hope this helps anyone considering a redo.