NJSHOREMOM, Have you tried giving yourself mini enemas to empty? I had to do that for almost a year due to strictures. I also had other problems includinf pain so my j-pouch was removed and I feel much better. Since you have don't have pain maybe this will help until your surgery.

TE MARIE- Yes I did try enemas. Would work for a few hours until I ate something, all food irritated me. I was beginning to think I was allergic to everything, then it would be that aweful urge feeling. Constant bathroom trips with very small output. Now I have an ileo going on 7 weeks. What a delight to eat & not have that urge to go. Went to a Broadway show & dinner. Only 2 bathroom visits in 6 hrs! I felt 'normal'-I resumed my walking & gentle yoga to gear up for next operation, still undecided if I should just be happy & go permanent ileo.  I do wish the fistula would go away. I wonder if any perm ileo's out there still have a fistula. I should of asked Dr if that resolves itself with a perm one?

Hi NJSHOREMOM. I feel your pain! I am currently diverted with an ileostomy (10/2015) and j pouch intact which I had done by Dr. Gorgun at Cleveland Clinic. I also have a stricture at the top inlet of my pouch and have been re-diagnosed with Crohn's after pouch formation in 1992/1993 and diagnosis of UC. I don't think fistulas go away on there own b/c the body doesn't recognize them as foreign. Uggghhh. I had setons and couldn't stand the discomfort any longer so I had a fistulotomy done. I am assuming this killed my sphincter and that I have no chance of re-connecting the pouch. All this was done while I was 99 percent sure I was going permanent Ileo. That darn 1 percent is what keeps me up at night wondering if I should find out how much spinchter damage was done and if pouch re-connection would be a possibility. My pouch looks fine but what good is it if I can't get poop out of my body without making the whole rectal region angry. And I have no idea how the stricture plays into all this since I never had any adverse symptoms from the stricture.  I have also thought about BCIR but my favorites -spinach and sunflower/pumpkin seeds-don't seem very BCIR friendly. This stoma rocks and I would be so sad if I had to limit my foods :-(. That being said, I am very skinny and feel like the bag is way noticeable despite all my attempts to minimize it, so that is where negative thoughts creep in about my ileostomy. I am currently wondering if I should make an appointment with Remzi just to see if he will squash the 1 percent hope of re-connecting my J pouch so I have to go to permanent ileo. As you can see, I am a terrible decision maker...hahaha. I need to have something done because I am so sick of rectal discharge. Now that Remzi is in NY, he is was closer to me than Cleveland Clinic. If I go permanent ileo/butt closure, do I go back to Cleveland b/c as I said before, this stoma rocks and can handle anything I throw at it!! Or do I go to NY b/c that is way closer to me?? Sorry-I didn't mean to take over your post with all my crazy thoughts but I thought I would share in case you had any similar ones!! I hope everything turns out great for you and good luck on your journey to being able to poop normally!!

Hi Lori, I certainly understand the situation you are in and the decisions you are faced with.  The initial steps I would suggest are to have a manometry test (to determine the strength of your anal sphincter) and a consultation to determine if retaining your J pouch or getting a BCIR are acceptable options for you.  If your sphincter muscles are good, I would go with a reconnection. I had a J pouch for 30 years, but had to have it removed due to recurrent high grade dysplasia in the anal canal.  Since I strongly did not want an ileostomy with its associated issues, I opted to get a BCIR.  The procedure worked out very well for me and I now enjoy a very good quality of life.

With my BCIR, I am able to eat almost anything I want, including sunflower seeds and everything in a large salad.  If something I ate clogs my catheter when I empty my pouch, I simply withdraw my catheter, pick out the offending item and then re-insert the catheter, a minor inconvenience.  I empty my pouch 4-5 times a day at my convenience and need only have a catheter with me when away from home.  I do not need to have replacement ostomy bags, supplies and a change of clothes with me since there is no leakage with a BCIR.  In some cases, the surgeon is able to re-use the J pouch when making a BCIR or K pouch.

Be sure to read up (on the internet) about your options and have a list of questions when you meet with your doctor.  Please feel free to send me a PM with any questions you have, and best of luck.

Bill

Lori- We are jpouch twins! Reading your reply was so similar to my expieriences. I am 5'0 - 105lb & the first few weeks with the ileo- the bag hung practically down to my knees. I was horrified. Not to mention it felt like I was wearing a dinner plate. After getting my never ending mail deliveries of free supplies-and some advice from an actual person who wears one & she's tiny.. I ordered the small size,incisions healed & life is pretty good. I do get morning anal discharge( I feel weird being so graphic-but pouchers get it)- I think it's from my coffee( can't & wont give it up). Funny thing is.. it's non- irritating ? How can that be, I had such bad  butt burn before ileo. If you can get to Dr R- he's so great and extremely personable and takes all the time you need. He didn't really sway me one way or the other. My other Dr 's would say/ stop trying to save pouch - just get the ileo. Now I know why. But I wasn't sick - it was all below pouch-so saying I have crohns is a stretch. Hoping it can be repaired. The fistula seems to stump every Dr I go to, mine were conservative, I did have a seton but was really uncomfortable. Got it removed. I guess deciding on the  hookup comes down to a few factors.  Pro/Con list is needed.  I don't want to be dominated by all the b.s. associated with strictures,fistula. I was really hating it & my social life was dominated by 'where's the bathroom located' was my first thought.. not anymore. Going to be hard to choose - vanity vs bigger clothes- lol .. 

BILLV- I wonder why my Dr's don't mention the BCIR, is it because only certain Dr's perform them? I am interested in that as well. My small size makes the regular ileo a challenge for form fitting clothes. Are there any long term issues with the BCIR? I'm grateful 7 weeks out from ileo & take no meds. Do you get flare ups of any sort with the BCIR? I know I'm strange in the fact I often feel what in the world would I do if I couldn't get ileo supplies & you said all you need is a tube. Sounds pretty awesome to me. Thanks for the info.

Thanks Bill and NJSHOREMOM for the input. Thank you Bill for the information and for confusing me more by telling me you can eat salads and seeds with the BCIR..hahaha. I am thinking I will call to see if I can even get in to see Remzi. There is no turning back after the butt is sewn up and the j pouch is gone so why not know what my options are before deciding. Quality of life is so poor with those fistulas, that I don't ever want to return that state of living. That is the only thing I am 100 percent sure of. HA! Stay in touch and we'll see where we end up!

NJSHOREMOM, it is indeed unfortunate that more doctors are not mentioning the BCIR or related K pouch to their patients as an alternative to the conventional ileostomy.  Some doctors try to discourage patients from getting one of these procedures, citing “high failure rates, complications, etc.” which is not true.  While some patients experience valve failure, fistulas and pouchitis, these conditions are usually corrected with surgery and antibiotics.  Only about 6% ultimately require removal of their pouch and getting an ileostomy.  At present, there are 2 surgeons who do BCIR’s in the USA, Dr. Ernest Rehnke in Florida and Dr. Don Schiller in California.  Both of these fine surgeons have done thousands of these procedures.  It is my understanding that efforts are being made to get more surgeons to do BCIR’s.  There are quite a few more surgeons who do the K pouch procedure.

The J pouch is the most commonly performed procedure since it is less complicated and maintains the “normal” outlet for elimination.  The majority of people getting BCIR’s and K pouches do this because of a failed J pouch or a conventional ileostomy that is problematic in terms of function or lifestyle.

Most of us with BCIR’s (and I have made personal contact with a number of them) are very satisfied with their BCIR and highly recommend it for the quality of life it provides.  The most common “flare up” that can occur is pouchitis.  In almost all cases, it is treated with antibiotics and probiotics.  A number of people have had their pouches for 30 years or so.  I sent you a PM with my contact information if you would like to learn more.

Bill

Hi guys, I am so grateful to find this thread. I am a 36 year old female considering a redo with dr Remzi. After his testing he couldn't find anything "conclusively mechanical", but still feels a redo will help me. I guess in the scope of j pouch suffering I have it pretty good. I have pain everyday (gas, cramps, bloating and trouble emptying) and use the restroom about 12-20 times a day and once or twice overnight. But I can function and can hold it well I just get very uncomfortable...anyhow...has anyone had a redo where Remzi could not 100% be certain it was only mechanical? Thanks and love to all my fellow j pouchers 

coco22 posted:

Hi guys, I am so grateful to find this thread. I am a 36 year old female considering a redo with dr Remzi. After his testing he couldn't find anything "conclusively mechanical", but still feels a redo will help me. I guess in the scope of j pouch suffering I have it pretty good. I have pain everyday (gas, cramps, bloating and trouble emptying) and use the restroom about 12-20 times a day and once or twice overnight. But I can function and can hold it well I just get very uncomfortable...anyhow...has anyone had a redo where Remzi could not 100% be certain it was only mechanical? Thanks and love to all my fellow j pouchers 

I had a redo with Remzi almost 2 years ago when he was still at Cleveland Clinic. My first pouch was a mess that I dealt with for almost 7 years. I had a sinus and a leak that they tried numerous procedures to fix but all failed. Mine was indeed mechanical. I am not sure why you would go through all this again if these are your only issues? Maybe you should see the top jpouch GI in the world, he is at Cleveland , Dr Bo Shen, for a consult before you decide on a major surgery. I trust Remzi a zillion percent but I would at least explore that option if nothing is mechanically wrong.

I have gas and pains all the time , and my pouch has a very mild prolapse that is not affecting function at all and Remzi and Shen both state that the pouch looks great. My bathroom trips are pretty much determined by diet. Some days its 4-6 and some days it could be 6-10 if I eat something that bothered me. My diet isn't all that great but I eat what I want to.

Hi everyone. I had my pouch redo in November of 2015 by Dr. Remzi. He stripped the cuff and fixed the mechanical problems of the pouch. During the last two years, I developed a recto-vaginal fistula which made him change my ulcerative colitis diagnosis (that I've had for 13 years) to a possible crohns diagnosis. In any case I just started Stelara and had my takedown surgery two weeks ago. So far so good except for this dreaded butt burn. I bough a bidet attachment and have been using Calmoseptine, but ouch this still really hurts. Does anyone have any idea how long this will last for? Thanks.

Hi BML,

after my first takedown I had the butt burn for about 3 months, then it got a lot better. Still happens on occasion...aweful right...hope it passes quickly for you

I just had a redo with Dr Remzi 6 days ago in NY. My last jpouch made was by one of the top surgeons a year ago. Remzi upon surgery also noticed a twisted top part of the pouch which was not observed on any CAT, MRI or xray I was required to take over the past year. Once I am out of here I will write a post on all specifics of how I am. 

AK-NY, I wish you a speedy recovery. I'm going in for part 3 on Oct 3.  I was interested to know how long they keep you in NYU for part 3? Part 2 of the revision was very rough. I truly believe the only way to fix the failing pouch was the revision. There was so much going on that no medicine could fix. Strictures,fistula,intestines were a tangled mess,fused together by scar tissue, large hernia. My pouch was a goner. Thankfully now I'm feeling great.  New j pouch is looking good and waiting for Dr. R to hook it up. If new pouch stops working can always go to perm ileo. The ileo lets you live a care free life. I can change the appliance in 60 seconds. It becomes very easy. I recently started telling friends and they couldn't believe I had it.  I believe in mind over matter,  you and I will recover and live a great life.��

just to post in regards to my recovery from the redo procedure

I wouldn't want to bore people with my background, but to summarize i had a failed pouch which was determined right during the take down procedure. For the Redo pouch procedure I chose NYU Langone over my previous hospital. I was lucky to discover Dr. Remzi had just moved to NYC where I reside. My mother and a friend had pushed me to get a second opinion.

As i already had an illeostomy, step 1 of the redo was the construction of a new pouch. This was an open surgery and i came to terms with it right upfront. My only concern was the upcoming pain level as all my previous surgeries were laparoscopic (maybe also why i had a failed pouch) vs the redo being open.

I was given an epidural for this surgery and i must say the pain was easily managed. The only side effect was itchiness on my body when i was on the epidural. All went smooth. I was out of the hospital in 5 days. I did have a over active output initially, and there were reservations on my discharge but i assured i would keep my liquid levels high. Long story short, all went fine. I was back at work in 3 weeks after surgery date. (5 days in the hospital, 1 week rest at home, 1 week work from home, the third week back in the office).

Ofcourse any surgery is not easy but half the job is done when you make up your mind. I must say - my caregivers (my mother) has been my lifeline. Alongside her, Dr. Remzi and each and every associate on his team is worldclass (10/10 on every aspect).

I had my take down 3 months after my redo. All went fine. 3-4 days in the hospital. Definitely painful as there was no epidural this time

i am one year post redo and takedown. i go to the restroom 4-5 times a day; sometimes more; but i have no issues with going as long as its pain free.

I was prepared for diarrhea but have more so experienced constipation and they discovered some narrowing on the outlet which the doctors open up during an EUA. I manage constipation with Prune juice / Plum juice / Grape Juice. Very recently, i experienced severe bloating and feeling sickish. A course of antibiotics did the trick here.

My diet - I eat everything except Salads and nuts. not much of a red meat eater either. My weakness is sugar and i have promised myself that now i am going to start taking it easy and clean up my diet and follow something along the lines of a paleo diet.