Have ileostomy with J pouch but feces coming from bum

For general discussion of ostomies and continent diversions.
Anyone can read. Only registered users can post.
No commercial posting allowed.

Moderators: Bob Webtech, Jimbob, ot dave

Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Post Reply
Diana T
Posts: 2
Joined: 2023-02-11 12:53:26

Have ileostomy with J pouch but feces coming from bum

Post by Diana T »

I have Chron's disease and assumed that my doctor was performing a permanent ileostomy due to very bad painful sores that developed because of
so much incontinence. I had no control! I was totally shocked after the surgery to still have feces coming out of my bum (sometimes quite a bit and wear thick panti-liners that I have to change often. When I questioned my surgeon about it he said that I would now need another major surgery that would be 20 fold what the ileostomy was. He would have to remove the J pouch and rectum! He tells me it would entail a long recuperation period. He also told me that he didn't advise or recommend it because he didn't think I could handle it. Yet now he is asking me if I want the surgery or
will I just live with this. My ileostomy was done 9/7/21 and I have been living like this since. Can anyone offer a suggestion. Please help!!!
User avatar
Posts: 4
Joined: 2023-02-12 08:54:26

Re: Have ileostomy with J pouch but feces coming from bum

Post by Bill_G »

I am not a doctor or medical professional.

You doctor may be explaining it poorly. Consider getting a second opinion Diana.

A healthy colon would void itself in a few days. But, your colon is the issue. An ileostomy interrupts the colon. It will take time for your colon to void if the surgeons didn't evacuate it during your procedure. Estimates for that amount of time increase if there are strictures preventing the colon from voiding.

For your own peace of mind, ask your provider's attending nurse for another explanation. And if they cannot satisfy your questions, then ask for a referral to another doctor.
Husband and caregiver to recent ostomy patient
Learning bag maint and wound care one day at a time
User avatar
Bob Webtech
Site Admin
Posts: 984
Joined: 2005-09-29 11:17:09

Re: Have ileostomy with J pouch but feces coming from bum

Post by Bob Webtech »


I think Bill_G may be right that you should get a second opinion, although not for the reasons that Bill described. (If you have a J-pouch, you don't have a colon any more.)

About the ileostomy you obtained in September 2021: Did the surgeon lead you to believe you were getting a permanent ileostomy but did a J-pouch instead? If so, that doesn't sound proper because a J-pouch is generally considered contraindicated when the patient has Crohn's disease.

Or did you already have a J-pouch before getting diagnosed with Crohn's disease, in which case your J-pouch was done sometime before the 9/2021 surgery? If so, then in the 9/2021 surgery, did the surgeon lead you to believe you were getting a permanent ileostomy but did only a temporary ileostomy (which may be similar to the temporary ileostomy you probably had for a few months when you had your original J-pouch surgery). This would suggest inadequate communication by the surgeon prior to the 9/2021 surgery, and may be a reason for consulting with another surgeon.

It may be true that the only complete solution to your current problem is removal of your J-pouch and rectum. This would indeed be a large operation, although probably not as big as the surgery that created your J-pouch. It's also true that removal of the rectum creates a large anal wound which can take a long time to heal. If this surgery would be too much for you to tolerate, you might get some relief of your current symptoms using short-chain fatty acid enemas, which are often used as a treatment for diversion colitis. You're probably suffering from diversion colitis (or more properly diversion pouchitis). Look up treatments for diversion colitis (you'll find many posts on that topic on this board).
Bob Baumel, UOAA discussion board administrator
User avatar
Diane C
Posts: 986
Joined: 2005-10-02 08:30:29

Re: Have ileostomy with J pouch but feces coming from bum

Post by Diane C »

Yes, Bob Baumel is probably correct in that you're dealing with diversion colitis. Fecal material is not leaking from your rectum but mucous with perhaps blood which sometimes (often?) occurs when the fecal stream is diverted from the rectum into a pouch. This is because necessary short-chain fatty acids (SCFAs) are no longer reaching your rectal area -- they're helpful and found in stool. I tried Rowasa enemas and Canasa suppositories and they didn't help much. Others use a "lavage" method during which they apply water enemas in the shower. And then there is fecal transplantation which you can Google. Didn't help me but may help you although rather messy and time-consuming.

After trying all this, I finally had my anorectal canal removed. (You can also search for Barbie butt to find more info.) I never ever thought I'd have this surgery but it was a godsend although it's not an easy one. I did have a tiny wound in my "posterior" for 3 months and a visiting nurse had to come to my home and apply a dressing. We thought it'd never heal and considered plastic surgery to close the tiny wound but it DID finally heal. Wound care is a field unto itself and complex so ask your surgeon about this, too. I did ask my surgeon and he skirted the subject -- don't let yours do the same.

Hope you've found a surgeon whom you trust and with whom you can talk honestly. That helps a lot! Whether you'll develop a wound with this surgery depends on the patient and the surgeon. I was lucky. A friend was not and has been at Johns Hopkins for quite a while because of his wound. Good luck!
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
Diana T
Posts: 2
Joined: 2023-02-11 12:53:26

Re: Have ileostomy with J pouch but feces coming from bum

Post by Diana T »

Thank you all for your help and education! But, I have an appointment with Dr, Kleiman at Layhey Clinic in Burlington,MA to get a second opinion
on Friday, March 17th ! I'm nervous and am very afraid to have the Big surgery but I believe that Bob Webtech is right on that I will need to do it!
I am also 72 yrs. old now and have 3B Chonic Kidney disease! Had severe renal failure twice soon after the illeostomy surgery and hospitalized
twice with receiving many bags of Fluids. Even continued outpatient fluid infusions 3 times/wk for month or two. My surgeon told me I had too
much output in the ostomy pouch therefore dehydrating so much. I now drink about 64 oz. of water daily as well as taking 2 lomotils and 2 immodiums
30 minutes before meals and at bedtime prescribed by my surgeon and that helps the stool to thicken. Otherwise stool is all liquid. And was also having
to measure the stool (emptied into plastic container) for a month or more so he would know my weekly output! Anything over a total of 1200 mgs.
daily (8am - 8am) is too much according to him, And due to this issue as well I am terrified even more! He also referred me to a Kidney Specialist as
well and do have an appointment coming up in April. thanks again!
User avatar
To Dream a Dream
Posts: 1356
Joined: 2010-08-10 18:35:53

Re: Have ileostomy with J pouch but feces coming from bum

Post by To Dream a Dream »

Welcome to our Discussion Board & thank you for your very detailed & informative post. Because I had surgery decades ago, I know there have been many changes in the surgical field. Your comments will probably ring true with many readers facing similar conditions today. Please continue to visit our board & remember that UOAA is here for you. It is easy to become discouraged when our bodies are undergoing the many challenges you have undergone, simply from fatigue. You are not alone in this. Our members care & understand. May your courage & will to face them as you have, support & sustain you.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
Post Reply