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I just joined your site and am so glad to have found it.
I have had long standing problems with colonic inertia (slow transit constipation.) I have had many ,many tests to confirm that as well as other tests to asses pelvic floor dusfunction, outlet obstruction syndrome, rectocele, cystocele and uterine prolapse.
My surgeon recomended after a recent deforgram that I have the Starr procedure to correct the rectocele. He feels that it is very big and fixing it may help with the constipation as well but the problem is that my muscle tone is at 50% and he feels that it may be further compromised by the procedure. He also feels that I must undertake any surgeries being fully prepared to have a permanent ileostomy due to the inertia and complications to fix the other presented problems.
I asked him if I would be a good candidate for a BCIR and he felt that given the inertia, it would not be a good choice. He also felt a j pouch would be a good choice.I don't want to have to wear a bag or the j pouch if I can help it.
I need advice so I can make the best decisions possible. Would anyone know doctors they would recommend especsially in the New England area for these issues? All areas would be great as well. I want as many good medical opinions as I can find.
I am pretty much getting desperate for relief. I am in constant pain and the quality of life I have is poor.
If anyone can help point me in the right direction for info, I would be ever so grateful.
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LindaAukett UOAA Advocacy
- Posts: 1603
- Joined: 2005-11-06 12:29:31
Hi rosebud,
I don't live with either a BCIR or a J-pouch, but hope I can shed a little light on things for you.
You referred to 'wearing' a pouch or J-pouch. A regular pouch is definitely something you 'wear' externally, but the J-pouch is an internal reservoir or storage area created from your own living tissue, a portion of the small intestine. Completely inside you.
I am a bit mystified that a doctor would tell you 'no' to a BCIR, basing that on lack of motility - because the BCIR is essentially drained by a catheter and doesn't rely on peristalsis - so the lack of motility wouldn't affect it all that much. (The BCIR is basically built the same way a J-pouch is, from your own intestinal tissue, but the exit canal is brought to the surface of the abdomen, which is where you would introduce the catheter to drain it.)
I am equally mystified that he would think a J-pouch is OK, since that has to empty through your compromised rectum and anal canal, and you do need to do a certain amount of work with your abdominal and pelvic floor muscles to either make it work or keep it continent.
I'm also not from the Boston area so will leave it to others from there to suggest actual names, but two great resources are:
- The International Foundation for Functional Gastro... Disorders at www.iffgd.org for motility issues
- this link to locate a board-certified colon & rectal surgeon by city or zipcode: http://ascrs.affiniscape.com/displaycom ... clenbr=104
One thing to be aware of re the BCIR, there are very few surgeons or surgery centers that do them. You can get more information at the association formed by people who life with a BCIR: http://www.qla-ostomy.org/
Good luck, and do hope you will remain in touch with us here.
Linda
I don't live with either a BCIR or a J-pouch, but hope I can shed a little light on things for you.
You referred to 'wearing' a pouch or J-pouch. A regular pouch is definitely something you 'wear' externally, but the J-pouch is an internal reservoir or storage area created from your own living tissue, a portion of the small intestine. Completely inside you.
I am a bit mystified that a doctor would tell you 'no' to a BCIR, basing that on lack of motility - because the BCIR is essentially drained by a catheter and doesn't rely on peristalsis - so the lack of motility wouldn't affect it all that much. (The BCIR is basically built the same way a J-pouch is, from your own intestinal tissue, but the exit canal is brought to the surface of the abdomen, which is where you would introduce the catheter to drain it.)
I am equally mystified that he would think a J-pouch is OK, since that has to empty through your compromised rectum and anal canal, and you do need to do a certain amount of work with your abdominal and pelvic floor muscles to either make it work or keep it continent.
I'm also not from the Boston area so will leave it to others from there to suggest actual names, but two great resources are:
- The International Foundation for Functional Gastro... Disorders at www.iffgd.org for motility issues
- this link to locate a board-certified colon & rectal surgeon by city or zipcode: http://ascrs.affiniscape.com/displaycom ... clenbr=104
One thing to be aware of re the BCIR, there are very few surgeons or surgery centers that do them. You can get more information at the association formed by people who life with a BCIR: http://www.qla-ostomy.org/
Good luck, and do hope you will remain in touch with us here.
Linda
Like Linda I am also confused by your doctor's no to a BCIR and yes to a Jpouch given what you have posted.
Dr. Joel Bauer and Dr. Milsom (I think the first name is Jeff) do Kock's and Jpouches out of Mt. Sinai in NYC. If you want to be really imformed
you may want to set up a consult with a doctor that does both.
Dr. Joel Bauer and Dr. Milsom (I think the first name is Jeff) do Kock's and Jpouches out of Mt. Sinai in NYC. If you want to be really imformed
you may want to set up a consult with a doctor that does both.