![[United Ostomy Associations of America, Inc.]](https://www.uoaa.org/forum/uoaaxt/images/uoaa_header_board7.png)
Need help/information on Artifical Bowel Sphincter
Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Need help/information on Artifical Bowel Sphincter
I am new to this site and I am facing a major life altering decision. I have no muscle control in my sphincter due to several surgeries to correct intestine problems. I currently have an ilistomy and the doctors want to reverse it. I have 3 options and one is placing this artificial bowel sphincter in my body. I have read information about it on the internet, however, I would like to have some input from someone who has had this device placed into their body. Any information, be it either positive or negative, will help me with my decision.
Need Help/Information on Artificial Bowel Sphincter
Hi JS,
I don't have an ABS but not too long ago I was in the same boat you are so I thought I'd pass along the names of the doctors who I saw. I think if you were to call any of them they would be able to hook you up w/ their patients who've had the procedure...
1) Dr. Doug Wong at Sloan Kettering in NYC - I've been told he's still the "go-to" guy for this surgery
2) Dr. Bernstein at St. Lukes Roosevelt in NYC - He's done 4
3) Dr. Steven Wexner at the CCF in Fl. - I'm thinking since you live in Florida, you've probably seen him?
You mentioned that you felt you have 3 options going into this reversal. What are your other thoughts?
Has anyone said anything about sacral nerve stimulation? I had the opportunity to give it a shot last summer. Unfortunately it didn't work for me. I won't bore you w/ my whole sad story but my sphincters were too damaged, but I know it has helped others.
I'm sorry I can't be of more help. I sincerely hope whatever you decide will work beautifully for you. Keep us posted.
Ali
I don't have an ABS but not too long ago I was in the same boat you are so I thought I'd pass along the names of the doctors who I saw. I think if you were to call any of them they would be able to hook you up w/ their patients who've had the procedure...
1) Dr. Doug Wong at Sloan Kettering in NYC - I've been told he's still the "go-to" guy for this surgery
2) Dr. Bernstein at St. Lukes Roosevelt in NYC - He's done 4
3) Dr. Steven Wexner at the CCF in Fl. - I'm thinking since you live in Florida, you've probably seen him?
You mentioned that you felt you have 3 options going into this reversal. What are your other thoughts?
Has anyone said anything about sacral nerve stimulation? I had the opportunity to give it a shot last summer. Unfortunately it didn't work for me. I won't bore you w/ my whole sad story but my sphincters were too damaged, but I know it has helped others.
I'm sorry I can't be of more help. I sincerely hope whatever you decide will work beautifully for you. Keep us posted.
Ali
Ali:
Dr. Steven Wexner is my doctor and I feel that I probably have the best around. He also suggested the nerve stimulation however, since I had a colostomy at 19 with reversal and then had a bit of incontinence after that, and then had this surgery and had even more damage we all felt that trying to reconnect the ilestomy was a bad decision. I would probably have severe incontence problems, not too bad during the day because I still had squeeze left in me however, the resting would probably result in me having to do laundry everyday. Not what I want to do with my life. My other option was a permanent colostomy. I was resigned to that after I read the website for the ABS system, however I then spoke with 2 ladies that had the system in place and they both had different stories. One loves the system with no problems and the other had a lot of problems but they both said they would do it over in a heartbeat. I had a lovely conversation with the one that had all the problems and after hearing about her situation I decided to give it a try. I know if I don't at least try this I will kick myself later.
My surgery is scheduled for June 21st and I am scared to death. But I have a great surgeon and the team will take great care of me.
Also, the lady I spoke with stated, if I can recall properly, had issues with Sloan Kettering at the beginning of the ABS system being used in research and testing that they wouldn't install it in her because they only did it for cancer patients at that time, I'm sure it has changed by now.
Wish me luck,
JS
Dr. Steven Wexner is my doctor and I feel that I probably have the best around. He also suggested the nerve stimulation however, since I had a colostomy at 19 with reversal and then had a bit of incontinence after that, and then had this surgery and had even more damage we all felt that trying to reconnect the ilestomy was a bad decision. I would probably have severe incontence problems, not too bad during the day because I still had squeeze left in me however, the resting would probably result in me having to do laundry everyday. Not what I want to do with my life. My other option was a permanent colostomy. I was resigned to that after I read the website for the ABS system, however I then spoke with 2 ladies that had the system in place and they both had different stories. One loves the system with no problems and the other had a lot of problems but they both said they would do it over in a heartbeat. I had a lovely conversation with the one that had all the problems and after hearing about her situation I decided to give it a try. I know if I don't at least try this I will kick myself later.
My surgery is scheduled for June 21st and I am scared to death. But I have a great surgeon and the team will take great care of me.
Also, the lady I spoke with stated, if I can recall properly, had issues with Sloan Kettering at the beginning of the ABS system being used in research and testing that they wouldn't install it in her because they only did it for cancer patients at that time, I'm sure it has changed by now.
Wish me luck,
JS
Need Help/Information on Artificial Bowel Sphincter
Hi JS,
Hey that all sounds great.
It sounds like you've really thought it all thru and to speak w/ those who have been thru it, is such a blessing.
I wish you all the best on June 21st.
It would be great to hear back from you after the surgery. This is one of those procedures that we've all probably heard about but never get to hear about it's success firsthand.
Take good care,
Ali
Hey that all sounds great.
It sounds like you've really thought it all thru and to speak w/ those who have been thru it, is such a blessing.
I wish you all the best on June 21st.
It would be great to hear back from you after the surgery. This is one of those procedures that we've all probably heard about but never get to hear about it's success firsthand.
Take good care,
Ali
Ali:
I will let you all know how the surgery went. Once I have the device placed in me it will take about 6-8 weeks to heal and then they have to activate it to make sure it works properly. Once we know it is working properly then they will close the ostomy. I am looking forward to the closure so I won't have to deal with the bag, adhesive and the noise. (Today he was talking very loud, had a bunch of my favorite food last night - green beans).
JS
I will let you all know how the surgery went. Once I have the device placed in me it will take about 6-8 weeks to heal and then they have to activate it to make sure it works properly. Once we know it is working properly then they will close the ostomy. I am looking forward to the closure so I won't have to deal with the bag, adhesive and the noise. (Today he was talking very loud, had a bunch of my favorite food last night - green beans).
JS
Hello everyone:
Had the surgery on the 21st of June and the doctor was extremely pleased with the outcome. He said the only thing we have to worry about is infection which was at a 50% rate but I have been loaded with antibiotics and right now I feel great. I was having some problems with the bladder but they released me from the hospital showing me how to self cath and today I started peeing on my own at a good flow. (You know the little things). I have a checkup on July 31st to see if everything is healing well and so far I've been out of the hospital for 1 week and getting around pretty well for still having a butt full of stitches and my belly full of staples. I do get the staples removed next week and the stitches are supposed to be self dissolving. I still have the ostomy but once the device is activated we can go in a close this thing.
Let's all keep our fingers crossed that my new "rubber asshole" works like it's supposed to. Isn't it great to have a sense of humor!
JS
Had the surgery on the 21st of June and the doctor was extremely pleased with the outcome. He said the only thing we have to worry about is infection which was at a 50% rate but I have been loaded with antibiotics and right now I feel great. I was having some problems with the bladder but they released me from the hospital showing me how to self cath and today I started peeing on my own at a good flow. (You know the little things). I have a checkup on July 31st to see if everything is healing well and so far I've been out of the hospital for 1 week and getting around pretty well for still having a butt full of stitches and my belly full of staples. I do get the staples removed next week and the stitches are supposed to be self dissolving. I still have the ostomy but once the device is activated we can go in a close this thing.
Let's all keep our fingers crossed that my new "rubber asshole" works like it's supposed to. Isn't it great to have a sense of humor!
JS
Wow,
Bet you're relieved to have the surgery overwith.So glad to hear everything went really well and that you are recuperating rather easily. I'm sure all those staples and stitches aren't a whole lot of fun but in no time it will all be a distant memory. How wonderful!
Do you have any sensation of the cuff or balloon? I would guess not until it's activated and even then probably no biggie...bet you're counting down the days to being bag free.
Please keep us posted.
Take good care and don't over do
Ali
Bet you're relieved to have the surgery overwith.So glad to hear everything went really well and that you are recuperating rather easily. I'm sure all those staples and stitches aren't a whole lot of fun but in no time it will all be a distant memory. How wonderful!
Do you have any sensation of the cuff or balloon? I would guess not until it's activated and even then probably no biggie...bet you're counting down the days to being bag free.
Please keep us posted.
Take good care and don't over do
Ali
I am counting down the days for closure. August can't come soon enough. I can feel the device inside me from actully seeing the balloon under my belly (just the protrusion of it due to being very thin) of course the pump makes my girlie parts look funny and I have very little sensation in the back end but boy did I know it when I had one stitch poking me. Had to have that one removed, it was actually making me stick to my stomach. I am taking it easy, bought a new recliner because the old one was well, old and had no more padding. Waiting for the Pirates of the Carribean to come out tomorrow. Sitting in the movie theatre is no problem. I bring my cushion, get a bucket of popcorn and enjoy.
Thank you all for your prayers and well wishes and I will let you all know when the next surgery is.
JS
Thank you all for your prayers and well wishes and I will let you all know when the next surgery is.
JS
I'd really like an update on this. As someone mentioned it to me b/c i just recieved word that i need a perm. ileo.
(my story is over in the 'young adult section' but for a refresher:
I just turned 26 in may, and back in march found out i had FAP, or familial polyposis. A genetic disorder that gave me rectal cancer...possibly stage 3. I started and finished 6 rounds of chemo, and five weeks of radiation. I just met with my surgeon who did some rectal ultrasounds to see how low in the rectum the tumor was, and how close to the sphincter muscle it was. turns out, after he examined me as thoroughly as he could under anesthesia that the tumor is waaaaay too low and close to teh sphincter, and he THINKS it's penetrating through the sphincter also. So he feels the entire sphincter has to come out. the whole colon, whole rectum, whole anus.
someone told me to look into kock pouches, and artificial sphincters.
i found some info online: http://www.surgeryencyclopedia.com/A-Ce ... rtion.html
but i'd definitely like more info.
and thanks for posting those doctor referals. i'll ask my surgeon about contacting them (he's encouraging me to get second..and third...and fourth opinions.
(my story is over in the 'young adult section' but for a refresher:
I just turned 26 in may, and back in march found out i had FAP, or familial polyposis. A genetic disorder that gave me rectal cancer...possibly stage 3. I started and finished 6 rounds of chemo, and five weeks of radiation. I just met with my surgeon who did some rectal ultrasounds to see how low in the rectum the tumor was, and how close to the sphincter muscle it was. turns out, after he examined me as thoroughly as he could under anesthesia that the tumor is waaaaay too low and close to teh sphincter, and he THINKS it's penetrating through the sphincter also. So he feels the entire sphincter has to come out. the whole colon, whole rectum, whole anus.
someone told me to look into kock pouches, and artificial sphincters.
i found some info online: http://www.surgeryencyclopedia.com/A-Ce ... rtion.html
but i'd definitely like more info.
and thanks for posting those doctor referals. i'll ask my surgeon about contacting them (he's encouraging me to get second..and third...and fourth opinions.
JS
I hope everything is going well for you. If your are up to it I would love to talk to you about this. I have been thinking about this surgery ever since I heard about it 5 years ago. I have a colostomy as a result of a pelvic fracture that damaged my sphincter muscle.
If you would like you could PM me. Thanks! Again I hope everything is going well for you.
Paul M
I hope everything is going well for you. If your are up to it I would love to talk to you about this. I have been thinking about this surgery ever since I heard about it 5 years ago. I have a colostomy as a result of a pelvic fracture that damaged my sphincter muscle.
If you would like you could PM me. Thanks! Again I hope everything is going well for you.
Paul M