Has anyone had a jpouch and then for WHATEVER reason had to go back to an ileostomy? I am only 27 yrs old. I was dx with rectal cancer and FAP last year. I had the temp ileostomy and now the jpouch. But I have developed a deep fissure, GI doc said about 1 cm deep, that is obviously super painful and am in pain basically 24 hrs. I don't have much sphincter muscle left so surgeon and GI doc are a little apprehensive on suturing or cutting fissure out. I also deal with incontinence, I think due to radiation. Therefore the fissure is having a hard time healing. My surgeon started me on paregoric and are trying to get incontinence under control to see if they can heal the fissure. I'm giving it til the end of the year to try everything but I can NOT live like this. So I'm thinking I may go back to the bag in hopes of having a better quality of life. Any suggestions, ideas, comments, maybe this has happened to someone? Thank you!
Original Post
Your situation is quite similar to mine. My GI discovered high grade dysplasia next to my J pouch and said it had to go. I also had very weak sphincter muscles. I was very strongly against having the bag and its associated issues and opted for a BCIR. I am 1.5 months post op and have a very good quality of life. A BCIR or closely related K pouch are good alternatives to an ileostomy if your J pouch does not work out. Please feel free to send me a PM if you wish.
Bill
Hi Kryss,

I'm in that boat right now. Had j pouch 10 yrs now but have had issues for the past while. Partial blockage, stricture and just urgency cramping etc. I had a scope of pouch and it is narrowing and will not improve. I have an appt to discuss going back to illeo which will give me a better quality of life.
I had my jpouch 15 years and just went to a perm. ileo this April. My issues were fistulas and Crohn's of the cuff, so my jpouch and rectum had to be removed. It was a difficult decision to make and I lived with the pain and issues for many years leading up to it. I'm sorry for your trials and sad to hear you have rectal cancer! Just letting you know that I'm doing really well and the ileostomy is not as big a deal as I worked it up to be. I'm 34 and healthy again!
Laura
I am having my jpouch removed after 22 years and having a permanent ileostomy on 9/22 due to developing Crohns around 2008...no choice now...failed all meds, stricture, Crohns in pouch, and horrible anal fissure...who knew these fissures can be so painful?!?!? I too am in pain 24 hours a day from it...want to pass out every time I go which is often...and they won't give me anything for the pain...what are you taking for it?
Thanks everyone for the responses! I am starting to research BCIR now, but am a little nervous about infection. I have no colon and experienced very high output with the ileostomy. So I don't know if the pouch would be able to hold all the stool. I am on no pain meds. I was on morphine immediate release over 300 mg and the pain management doctor said he didn't feel comfortable prescribing anymore because he was afraid I would overdose on accident. The pain was-is so bad that I would keep increasing the amount on my own. I am so happy that hopefully you will be free of pain now with your upcoming surgery. Please keep me updated on how everything goes. Best of luck!
Krys, you are fortunate that one of the surgeons who does the BCIR is in St. Petersburg. When you refer to “infection”, I am assuming that you mean pouchitis, which occurs in some people with continent pouches (J pouch, K pouch and BCIR) and usually responds well to antibiotics. I have had no problems with infections. The typical BCIR expands from about 50 cc’s just after surgery to a maximum of 1,000 cc’s (one quart) several months post op. You will have a feeling of fullness when it is time to empty. I have always had plenty of time to find a bathroom when that feeling occurs and typically empty 4-5 times a day at my convenience. It is possible that your output will decrease with the BCIR.

You can get an excellent informational packet from the BCIR center in St. Petersburg(www.bcir.com). This packet includes a good description of the procedure, medical research papers, a CD and a list of about 300 people with BCIR’s who have consented to talk to those interested in the BCIR. Over 70% of BCIR’ers converted from ileostomies.
Bill
I have never had an abscess, but I did have skin irritation around the stoma for the first couple of months post-op. This was due to some valve leakage while the pouch and valve matured. I controlled the rash with skin barrier creams (like diaper rash ointment). Since then, I have had no leakage whatsoever and no skin irritation. The stoma itself is button hole sized and does not protrude like a standard ileostomy stoma. This is one of the ways a BCIR is better than an ileostomy. It really is no more of a “wound” than an anus.
Bill
Thanks again Bill! I spoke to my GI today and she has hope that we will be able to get incontinence under control and will get skin healed. She also said after speaking with my surgeon that it is not a true anal fissure but instead severe breakdown of the skin. I will be getting a bidet in the next few days so I am crossing my fingers that the decrease in wiping will help relieve some pain.

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