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To ileostomy or not to ileostomy...need advice from experts?

Posted by michaelm700, on Thu Oct 31, 2019 10:01 pm

Hello,

 

I have always been very active all my life, no IBD, but...I broke my butt...yep, that can really happen and need advice from real experts.

Lifting weights, age and years of spinal damage from doing the same culminated in nerve damage after an exterme lifting session that left my rectum paralized.

I have gone from exercising every day for the last 40 years (since I was 16), socially acive and productive at work to dropping 30 lbs, stop exercising, much less productive and a hermit shut-in. I cannot have a bowel movemwnt. I limit diet, take tons of Mirilax daily to prevent im[paction and clear my colon with water irriagatin which is painful for days.

I have tried everything and anything, all medications, laxatives and biofeedback with no effect.

 

Should I get an ileostomy? I just want to be functional in life again.

 

Really appreciate any and all input!!! 

 

 

Reply by lovely, on Thu Oct 31, 2019 10:24 pm

Hi I have an colostomy not an ileostomy I have had it since 2014. Is your Dr recommending the ileostomy? It does take some getting used to having an ostomy. There is a lot to learn but this site has a lot of information from people who are willing to share. I have not been on this site long but have learned a lot. If you decide to have this done feel free to ask any question you may have. You will find a lot of different information on any subject you may have. Hope everything works out good for you. Let us know how things work out for you. Best wishes

Reply by w30bob, on Thu Oct 31, 2019 11:56 pm

Hi Mike,

  Is your rectum actually paralyzed or do you have neurogenic bowel?  I assume it's the latter and you've seen the appropriate Docs and tried all the treatments.....right?  If so, you're talking about a colostomy rather than an ileostomy. I believe there are 2 types for your condition, depending on how your peristalsis has been affected. You can have a traditional colostomy where they route your colon thru your abdominal wall and you wear a bag....or they can route your bowel to form a stoma, but not disconnect it from your rectum. In this config you'd use your stoma only to irrigate and you'd still poop out your ass......so basically giving you an irrigation port and you wouldn't need to wear a bag.  

  I can't comment on the pros and cons of either, as my situation is different from yours.  But I do have a friend who had colon issues (after his liver transplant) and got a colostomy.  He loves it, as it gave him his life back. I'm sure the colostomy folks will chime in here and give you some good advice and guidance. You came to the right place.

Regards,

Bob

Reply by Bill, on Fri Nov 01, 2019 2:53 am

Hello michaelm and welcome to the site. I like your question and the replies you have had so far. An ileostomy sounds a bit drastic for the condition you describe and I would certainly be questioning this with the surgeon.

You don't mention any diseases that might affect the colon so I presume that the bowel/colon is otherwise pretty healthy. 

I had problems with my anus and sphincter, which pointed very much to a colostomy rather than an ileostomy. If a colostomy would sort your problem out, then I would highly recommend it from my own experience. It would or might also give you the opportunity to irrigate, which will make your life with a stoma so much easier and give you the freedom to do almost anything (except perhaps weightliftng, which I'm afraid, will probably be a thing of the past for you).

It took me years to make the final decision to have the operation, but since then I have only looked back in order to confirm in my own mind that I made the right decision and that I now think I should have made it sooner rather than later. 

Best wishes

Bill

Reply by michaelm700, on Fri Nov 01, 2019 3:25 am
lovely wrote:

Hi I have an colostomy not an ileostomy I have had it since 2014. Is your Dr recommending the ileostomy? It does take some getting used to having an ostomy. There is a lot to learn but this site has a lot of information from people who are willing to share. I have not been on this site long but have learned a lot. If you decide to have this done feel free to ask any question you may have. You will find a lot of different information on any subject you may have. Hope everything works out good for you. Let us know how things work out for you. Best wishes


Hi lovely,

 

Thanks for responding. Depends on the doc, but one says I'm close and all agree it's on the table. I think this is such a rare situation, even doctors are lost about the best course of action. Hope you are doing well with your ostomy!

michael

Reply by michaelm700, on Fri Nov 01, 2019 3:36 am
w30bob wrote:

Hi Mike,

  Is your rectum actually paralyzed or do you have neurogenic bowel?  I assume it's the latter and you've seen the appropriate Docs and tried all the treatments.....right?  If so, you're talking about a colostomy rather than an ileostomy. I believe there are 2 types for your condition, depending on how your peristalsis has been affected. You can have a traditional colostomy where they route your colon thru your abdominal wall and you wear a bag....or they can route your bowel to form a stoma, but not disconnect it from your rectum. In this config you'd use your stoma only to irrigate and you'd still poop out your ass......so basically giving you an irrigation port and you wouldn't need to wear a bag.  

  I can't comment on the pros and cons of either, as my situation is different from yours.  But I do have a friend who had colon issues (after his liver transplant) and got a colostomy.  He loves it, as it gave him his life back. I'm sure the colostomy folks will chime in here and give you some good advice and guidance. You came to the right place.

Regards,

Bob


Hi Bob,

 

Thanks for the info. Seen two colorectal surgeons and both want to try more biofeedback but agree surgery may be an option. This is such a rare situation, think no one knows for sure what's best and of course of action. Then I read about people like your friend, Blake Edwards, there's a guy who ran a 2:30 marathon and a professional boxer, Michael Valentine all with ostomies, so I keep wondering if it's not the best of a bad situation.

 

Thanks,

 

michael

Reply by michaelm700, on Fri Nov 01, 2019 3:45 am
Bill wrote:

Hello michaelm and welcome to the site. I like your question and the replies you have had so far. An ileostomy sounds a bit drastic for the condition you describe and I would certainly be questioning this with the surgeon.

You don't mention any diseases that might affect the colon so I presume that the bowel/colon is otherwise pretty healthy. 

I had problems with my anus and sphincter, which pointed very much to a colostomy rather than an ileostomy. If a colostomy would sort your problem out, then I would highly recommend it from my own experience. It would or might also give you the opportunity to irrigate, which will make your life with a stoma so much easier and give you the freedom to do almost anything (except perhaps weightliftng, which I'm afraid, will probably be a thing of the past for you).

It took me years to make the final decision to have the operation, but since then I have only looked back in order to confirm in my own mind that I made the right decision and that I now think I should have made it sooner rather than later. 

Best wishes

Bill


Hi Bill,

 

Thanks for the info. They're not sure exactly, rectal manometry showed definite rectal dysfunction and motility studies showed some colonic inertia. It all happened literally overnight...went from no constipation problems with daily BMs for 56 years to nothing. My colon was fine at the beginning a year ago but has gotton worse from all the laxatives and enemas. Where you offered biofeedback? In any event, I know it was a tough decision, but glad to hear it was the right one!

michael

Reply by Bill, on Fri Nov 01, 2019 6:17 am

Helo michael. I was offered all sorts of things but biofeedback wasn't one of them. At the time I don't think it would have showed any abnormalities thatwe didn't already know about.

Best wishes

Bill

Reply by w30bob, on Fri Nov 01, 2019 10:01 am

Hi Mike,

   I'm not saying you haven't already done this, so if you have just ignore.  But the first thing you need to do is find the best, most experienced team of docs who specialize in your paralysis.  I don't think it's as rare as you allude to.  There's so many damn people on this rock, and everyone has something wrong with them that the term "rare" now means just not as common as some other ailments.  Either way, experience with the condition is the most important aspect in finding a medical professional.  When I Googled it the most information was provided by Cedar-Sinai, which has locations all around LA and probably throughout California.  Not saying they are worth contacting, but they might be at least a starting point.  So before you do anything drastic....find the most experienced folks to help guide you.  I was just looking at stem cell research for another friend and found the link below.  Again, not saying it's your magic bullet, but the point is advances in medical treatment really are happening at breakneck speed.  Clinical trials might be another avenue for you to consider.  There's a government website that lists all the clinical trials beind done or planned to be done and you'd be amazed at all the stuff that's going on.......and that you can get involved with.  I'll see if I can find it.  So bottom line is "look before you leap".  I'm a bit busy right now, but if you need help researching this stuff I can make time to do some digging later this weekend.  And if all that I'm saying is making you roll your eyes (because you've been there and done that) I again apologize. 

https://www.spinalcord.com/blog/first-paralyzed-man-treated-with-stem-cells-has-regained-movement

 

regards,

bob

Reply by Tickpol , on Fri Nov 01, 2019 11:23 am
w30bob wrote:

Hi Mike,

   I'm not saying you haven't already done this, so if you have just ignore.  But the first thing you need to do is find the best, most experienced team of docs who specialize in your paralysis.  I don't think it's as rare as you allude to.  There's so many damn people on this rock, and everyone has something wrong with them that the term "rare" now means just not as common as some other ailments.  Either way, experience with the condition is the most important aspect in finding a medical professional.  When I Googled it the most information was provided by Cedar-Sinai, which has locations all around LA and probably throughout California.  Not saying they are worth contacting, but they might be at least a starting point.  So before you do anything drastic....find the most experienced folks to help guide you.  I was just looking at stem cell research for another friend and found the link below.  Again, not saying it's your magic bullet, but the point is advances in medical treatment really are happening at breakneck speed.  Clinical trials might be another avenue for you to consider.  There's a government website that lists all the clinical trials beind done or planned to be done and you'd be amazed at all the stuff that's going on.......and that you can get involved with.  I'll see if I can find it.  So bottom line is "look before you leap".  I'm a bit busy right now, but if you need help researching this stuff I can make time to do some digging later this weekend.  And if all that I'm saying is making you roll your eyes (because you've been there and done that) I again apologize. 

https://www.spinalcord.com/blog/first-paralyzed-man-treated-with-stem-cells-has-regained-movement

 

regards,

bob


I agree with Bob.  Not everyplace is well served by experienced gastros and surgeons.  I would see about going to the Mayo (there's three of them)  or Hopkins before you do anything permanent. If anybody's seen your situatopm before it's likely to be there.

 

Best of luck,

 

Dave

Reply by warrior, on Fri Nov 01, 2019 12:00 pm

Good albiet great advice from dave bill and bob..research..i might add however....before considering a bag...get yur hands on a waffer and bag and attach it at yur belt line. A faux system like that will give u great depth in knowing how u can manage somethibg like wearing an external appliance..  I wish i had that kind of time before my emergency surgery. Boy. It sucks.  But u do adjust to it.  You seem like a practical fella..do this.  Samples are feee from any vender...hollister...convateck... Get yourself comfortable with the prospect of wearing one BEFORE ..you need one.  Go out..date..get laid..shop..mingle.. Wearing an appliance is a servere head trip. Emotionally and phsyically. Then as if wearing one alone wasnt enough...fill the bag with water...try sleeping with it...try emptying it.. Go out with this nerf football attached to yur side..  It will definitely help you decide one of two evils. People will agree its a life changer.  But if u had say an internal option..hiden...boy I'd grab that fix without blinking an eye. Good luck. Keep us posted..keeping questioning and asking.. And do find the best place...hospital..and surgeon...you can while u have time. 

Reply by panther, on Fri Nov 01, 2019 12:04 pm

I've have an ileostomy and had it for over 30 years I'm not an expert I just have one. I've had mine since I was 19 it's never stopped me from doing anything or working just live my life as anyone without one does. I used to exercise a lot and strength train with my ileostomy (not to your level) I can't now due to other health problems. There are profesional body builders with ileostomys/colostomys so No having one wont stop you, health problems could but thats for Dr's to advice on 

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