I have seen surveys about giving up on the J-pouch and going back to the ileostomy, and wanted to be sure that people who are struggling with the J-pouch know that there is an alternative to going back to the bag. I suffered for 4 years with my J-pouch (fissures, inability to empty because of scar tissue build up at the reconnect site, cuff bleeding, constant pouchitis, etc.) Finally, after 4 blood transfusions, the internist I was seeing said that I had to go back to the bag. I know that the bag is OK with some people, but I would have rather died that had to have that bag for the rest of my life, so I started to do my own research, and found Dr Schiller with Olympia Medical Center in Los Angeles CA who doews the Barrett Continent Intestinal Reservoir. I had the surgery done 4 1/2 years ago, and I have never been happier! I will be forever grateful to Dr Schiller and his team for giving me my life back! I am happy to answer any questions for those that are suffering with the J-pouch and feel like the bag is their only option. Feel free to email me directly at firstname.lastname@example.org
I agree with what Lisa said and can relate personally to her experience. My BCIR was done by Dr. Ernest Rehnke in St. Petersburg, FL and the care I received from him and the hospital staff was first class. I now enjoy a quality of life that is much better than I would have had with the bag. Both surgeons have web sites that provide a lot of information on the procedure and contact information. A large percentage of patients getting BCIR’s (and the related k pouch) have converted from conventional ileostomies that were not satisfactory for them. Those considering these options should research them and believe that this is the best personal choice for them.
Yes, the K pouch (the original continent ileal reservoir ) and the BCIR are excellent alternatives to failed j pouches or for people who already have an end ileo and are having problems (physical or emotional) with it or people who are not candidates for a j pouch for other reasons (no anal sphincter...)
Doesn't matter which procedure you get, the principal is the same...you keep the pouch inside your body (made out of your own small bowel) and remove the waste when you want to with a catheter.
A BCIR or K pouch must be done by an experienced surgeon with a competent team...this is not an approximate surgery that can be done by just anybody. They must be trained.
That is the problem...very few colorectal surgeons wish to be trained in this procedure because it is so delicate to do and mastery or it is difficult.
It lost popularity with the advent of the j pouch (a good thing...it meant that people got to keep their natural exits and not have to carry around a syringe and catheter to empty out...a sort of freedom in itself).
But when j pouches started to fail ( uncontrolable pouchitis, fissures, cuffitis, strictures...) people started to turn to 'other' solutions. Not everyone is capable of facing an ileo with outside bag. Some for physical reasons like skin breakdown with the bag and others for emotional reasons or body image reasons.
Please get the word out there...The more people who ask about it and request it the more surgeons will continue to do the procedure.
Happy to hear that you are alive and well and living your life to the fullest.
ps. sorry to sound so preachy!
hi lisa, bill and sharon
i'm in the failed j pouch boat and sinking!! my k pouch surgery is scheduled, as i have mentioned before, for friday the 13th, in nov, at cleveland clinic with dr. dietz. i also had a consult in nyc with two docs and they are promoting redoing the j pouch, claiming that my problem is that it was improperly constructed from the get-go and i suffer from ischemia and not pouchitis. they are not taking into consideration that i have anal canal pains that inhibit proper evacuation.
i'm on board for the k pouch, but do need to talk with my local doctor one more time to make certain that the pouchitis is not going to be too much of a problem with the k. i've run through all of the drugs for treating it. lisa, i am interested in your experience with pouchitis and the k.
sharon, not at all preachy, you are always informative and helpful.
thanks all, janet