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Question regarding health & QOL w/ colostomy vs. ileosto

Posted: Fri Apr 29, 2016 4:15 pm

I'll give much more detail about my situation soon, but I have a nagging and very important question to help me sort through things here.

I had a botched resection/rectopexy that has left me with a very poorly-functional colorectal area. I've been told the surgeon wants to do an ileostomy. To me it seems to clearly be a case calling for a colostomy (descending or sigmoid?). I was wondering, are there huge differences in what to expect health wise in the short and long term? How much energy should I put into second opinions and/or fighting for a colostomy vs an ileostomy? I'm very confused, but obviously a bit scared of accepting giving up the entirety of my colon when it clearly seems like only the final third is dysfunctional.

Any thoughts on life with a colostomy vs. life with an ileostomy would be very helpful for me right now. I know each case is unique, but I'm finding difficulty seeing information that goes through the basic differences in quality of life and/or what to expect, besides the consistency of stool changing.

Thank you very much.

  Past Member
Posted: Fri Apr 29, 2016 7:34 pm

rewinj  I am 62 with an ileostomy since 2014.  The best that I understand is that if the lower third of you system is damaged the removal is generally thought to be the best procedure because of the possibility for rectal cancer in the rectal stump and anus.  BUT YES by all means get a second and if you are still wondering a third opinion, preferably by a surgeon from another facility.  I have discovered that surgeons do not like to discuss procedures that they themselves are not capable of performing.  Having an ileostomy, I have only recently learned about the BCIR procedure, whereby the rectal stump is removed, a barnett continent internal resevoir is formed out of the last 2 feet of small intestine and elimination takes place from a very small incision just above the pelvic bone, where a small catheter is inserted by you two or three times a day to empty waste.  It requires no outside appliance and is covered by a small band aid.   This is the latest improvement on the KOCH pouch which  along with the J POUCH and IAAP are the most ofter performed procedures.  Again, the last third of you system being what is damaged, it kind of takes you out of the picture for being able to have a typical J Pouch, etc, because with that you evacuate your waste as any normal person, by sitting on the toilet.  I have been to a seminar about this procedure, and webinars are available online for information. AS far as differences between ileostomy and colostomy, I'm not sure of the real differences except that I am aware that ileostomy patients are considered the best candidates for the BCIR.  I heartily urge you to do the research, because I can promise you that your surgeon will suggest what he/she is capable of doing, and may not even discuss the BCIR.   Mine didn't.  Again, check online  there is a lot of data and many webinars from Palms of Pasadena Hospital in St. Petersburg, Fla. and also OlympiaMedical Center in LA> California, the only two hospitals that I am aware of that perform this procedure.  And yes, no matter what you decide and what the outcome, it is worth the time and energy to make yourself comfortable with your decision.   

Peace Nancy

Posted: Sat Apr 30, 2016 2:58 am

Hello rewinj. I just wanted to say what a great reply you have from Nancy, particularly in the last line.

It sounds as if you are already familiar with the main differences between colostomies and ileostomies. I hve a colostomy which allows me to irrigate so the effects of having a stoma affect my life adversely seem to be diminished as compared with what people write about their ileostomies.

I hope that you get some replies from people who have experienced both because they will be the people with a better grasp on what the real, practical  differences are.

Best wishes Bill

 

Posted: Sat Apr 30, 2016 4:08 pm

Thanks a lot guys. Based on my initial readings, it seems like quality of life is actually often better for ileostomy patients, at least according to the medical literature. I was just assuming that less functioning colon = more whole body problems, considering all the research about the human microbiome and gut flora. I'm still really confused about everything though, and would love to hear anybody else's ideas and/or experiences regarding colostomy life vs ileostomy life. Thanks again!

Posted: Sun May 01, 2016 10:28 pm

Rewinj, The biggest difference between Ileostomy and Colostomy is the consistancy of the output. Since the large intestine aabsorbs water the output is usually firmer. However, as the body adjusts the small intestine will start absorbing the water. I am 69 years old with a 54 year old stoma. Ok, I've had a couple of revisions but my initial Ileostomy was in 1962. Depending on what I eat will affect the type of output. I had no choice in having a Koch pouch as it hadn't been invented. I've discussed an iinternal pouch and after looking at the problems I have stuck with the Ileostomy. It has seen me through High School, College, dating, mariage, raising a family, having a career and moved into retirement. It neve stopped me from doing things I wanted to do, from ridiong motorcycles, flying, traveling, swimming, etc. But, then agaiin, everyone has to make their own choice. Just be sure it is a fully informed choice.

Bob H.

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