J pouch removal is a major operation. Before proceeding with this surgery, I suggest that you get a second opinion. Cleveland Clinic is one of the most highly regarded places for evaluation and treatment of J pouch problems. After getting a second opinion at Mayo Clinic (which was closer to where I live), I elected to get a BCIR. This surgery was done at the same time my J pouch was removed. The operation took longer than normal due to adhesions, but everything went well and my bottom was healed by the time I left the hospital. I enjoy a good quality of life and feel that this surgery was the best choice for me.

If you decide on surgery, you may wish to consider a BCIR or closely related K pouch as alternatives to an ileostomy. These two procedures avoid the need for an external bag. You can get lots of information online about all 3 alternatives. You may want to check out the BCIR program website (www.bcir.com) for information on that procedure. Hang in there and best of luck!
Bill

Thanks, BillV. I'm being advised by both Cleveland and Cornell hospitals to have my pouch removed. Does IBD continue with BCIR?

Does anyone else have any further advice/info regarding their experiences with pouch removal surgery and the bottom wound?

Thanks so much!

If Crohn's is diagnosed or highly suspect, then continent ileostomy is contraindicated.

Jan

Yes, I had my pouch removed six months ago. It does heal (I had multiple fistulas to heal as well) over time. Thankfully, I did not require any further surgery as both the abdominal incision and my new Barbie butt healed just fine. I'd say it was a solid 6 weeks of healing and I was 100% by 8 weeks. I was on pain killers/not driving for 4 weeks (one of these weeks was in the hospital, of course).

Click on my name in blue and you can search all my other recent posts about the recovery. If you have other questions, please ask or send me a PM.

It's a big decision as permanent is permanent. I'm thrilled to be doing so well and completely drug and symptom free!
Laura

Thanks for the responses! Do the fistulae dry up after the excision or do they have to be surgically closed as well?

I'm not so concerned about the permanence of it all; I'm worried about disease progression after pouch excision. I'd been diverted from the j pouch 3 years ago and did well for 2 years, but the disease managed to return and progress. Has anyone seen IBD progress even after the pouch is removed?

Yes, mine just closed up and stopped draining anything a few weeks later. Some patients need further surgery or cauterization, I was told, but I didn't need this.

I have a Crohn's diagnosis. The doctor at Mayo was willing to just divert and do a temp ileostomy, but I came home and had my surgery at Johns Hopkins Hospital and that doctor would not just divert as his assessment of my case was that the pouch had to come out to heal the fistulas (and cuff was a disaster also). I pray that Crohn's doesn't show up in my small bowel. Mercy!

Let's just keep praying for the best. Best wishes to you and thanks for all your feedback and support

HI. I am in exactly the same position. I've had pouch for 22 years now. Sadly I have crohns also so fistuals and poor reaction to biologics have brought me to the decision or removing pouch. I am almost 50 now so I don't really care if i have a bag now, I just want to be alive for my kids. Hard to recover from other illnesses such as pneumonia when immune system is so shut down from drugs and disease. I just want as little disease in my body. You're not alone in making this decision. It seems to me this pouch was great at 1st but steadily declined after 6 or 7 years. Its just gonna be more and more drugs unless we remove the disease. TNF is difficult for them to stop unfortunately. Good luck

Good luck to you too! My j-pouch had pouchitis from day 1. It just feels so disheartening to have had all these surgeries and worked so hard to keep it functional all this time and then bam, it's gotta go. I wish surgeons and GI doctors could have a better criteria or some tests that would allow them to determine who would be at greater risk for pouch failure and accordingly make recommendations so that our suffering wouldn't be as prolonged.

Pouch removed in 2003 - no issues wih healing tush or anything else. Snapped back really fast because my pouch was my problem. Once gone my body was very happy. Have since had 2 babies. Never a single regret about having the removal done.

When you get a new stoma where do they put it? I ram 4 months post takedown, but I hate it! I miss the bag. But I am small, my scar is only 1 1/2 in, but it is right where imwould want the stoma.

My new stoma is right in the same spot as my temporary one (right side, about 2" below my belly button). I like this placement. I too am small (5' 1"), so I just choose bags that are midi sized to comfortably tuck inside my pants.

My daughter has come up with all sots of tricks to keep the bad as discrete as possible. She has a surgery date for the 26th and couldn't be more ready. An ostomy is the least of her concerns. She is just hoping to feel better!

She uses an ostomy belt that is 4 inches wide--she has a retracted Stoma.

She wears her bag off to the side--likes it better that way has no problems emptying

You know those layering tops that ere advertised on tv that are no more than a tube top for around the waist for a layered look? She uses them a lot. At home she lets her bag get a lot more full than when out and about. I think they may be trendy tops or something like that. Sold at bed bath and beyond for one place.

She wears shirts a lot that aren't too tight but she's thin so a lot just hang loose at the waist.

Hi All,
So I had my j-pouch, rectal cuff and anus removed 7 days ago and now have Barbie butt. I'm not gonna lie- this has been one hell of a surgery to recover from. For one, my bottom feels like someone straight up took a torch to it. I'm still in the hospital and was wondering what sorts of things you all did to alleviate the butt pain so you can sit with greater ease? Does a gel cushion or some kind of ointment help? Any and all recommendations are greatly appreciated!

Hi desisn00ps
Hope you are feeling a little better. Not sure what kind of butt pain you are having as I have not had your surgery. But after my takedown I used Nupercainal ointment with good results for irritation. Best of luck for a swift and comfortable recovery!

Thanks so much for all your advice everyone!

So I'm 5 weeks out of surgery but I'm still draining from the bottom and the bottom is closing/healing. I'm on my 3rd round of antibiotics to try to help this heal. I'm being told that I may need a catheter/wound vacuum inserted to help the drainage clear up so the bottom can heal properly.

Has anyone experienced this? What was it like and did it work?

I had my JPouch removed on December 10th of 2014. It was six months of one problem after the other...pouch/vaginal fistula (that did heal some on its own), bacteria overgrowth and Cuffitis. I had been a fairly happy ostomate for a little over a year. But I had active UC STILL in the 8 cm left in the rectum after colon removal emergency surgery dut to UC gone mad. It was actually my first diagnosis of UC. I had only been dealing with Proctitis for 6 years prior to that. Anyway, for six miserable months I went to the bathroom 10-12 times from afternoon to early morning, had a constant swollen bottom, and was on four medications to treat the bacteria overgrowth and Cuffitis. My main reason for having surgery was to have the UC completely gotten rid of. The surgeon told me he would remove it all and that the JPOuch would improve things for me. It did not. At all. He left enough diseased tissue that caused the Cuffitis and the JPouch just never worked well for me. I felt like I was living with UC all over again. So I decided enough of that...and had the JPouch removed December 10. I immediately felt better and have done well post op. My surgeon did not remove the entire rectum, it is merely sewn up. Although he assures me he got rid of all infected tissue. I do have slight drainage that is tinged with blood but they are not concerned about this and say it will go Away in time. I hope so. But it is nothing compared to the pain and discomfort I had in my bottom before with the JPouch. I am addressing some pouching issues to get the proper fit and hopeful that the skin irritations I have will go away now. This hospital had poor ostomy care while I was there and so I didn't start off as well as the first surgery for an ileostomy was. I had my JPouch done at UNC Chapel Hill as I was referred to a doctor there who apparently had major credentials in doing JPouch surgeries. It just didn't work for me. It was a tough decision to make to have it removed, but I am feeling so much better and able to be more active in my life rather than camping out by a bathroom. I'm only five weeks out from this so I need more time to heal all the way. None of these surgeries are easy. I am very glad to find this site though!

Good luck with the healing process!!

I had temp ileostomy for five mths.  Lost part of my rectum due to cancer.  It was an adjustment to say the least.  It took a good 5 mths for my bowels to get back to some kind of normal, I still go 8 times a day, but have some regularity now.  I never had problems healing after my takedown surgery.  They sewed me up where stoma was and it healed nicely, never any drainage. I wish you the best. Prayers.

Hi guys, so I'm now 14 weeks post j-pouch/rectum excision and my bottom is still draining. I had multiple drains put in in January to ease the healing process and even though the bottom is now 90% closed, it is still raw and bleeds if I walk more than a half mile a day or do light exercises/physical therapy. Has anyone else had this issue? How long have you guys seen it take for the bottom to close? Any and all insight would be appreciated!

Just wondering how long is needed off work for jpouch removal and permanent ileostomy? I am a healthcare professional, so on feet all day and quite physical. Thank you

Winter, we were told 6 weeks.  My son was also told no driving for six weeks either.  Trust me, you're not going to want to.

Looks like I'll be going down the same road sooner rather than later; hoping for a good surgery and recovery time, although I know it is a major surgery. At this point, I just want to be done.

 

I am sad to lose my pouch, but the stupid fistulas have proved too much.

 

Gin