Need advice - Ileostomy for rectal paralysis?

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 extreme lifting session that left my rectum paralyzed.

I have gone from exercising every day for the last 40 years (since I was 16), socially active and productive at work to dropping 30 lbs, stop exercising, much less productive and a hermit shut-in. I cannot have a bowel movement. I limit diet, take tons of Miralax daily to prevent impaction and clear my colon with water irrigation 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!!!

Hi, I have a colostomy, not an ileostomy. I have had it since 2014. Is your doctor 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 questions you may have. You will find a lot of different information on any subject you may have. Hope everything works out well for you. Let us know how things work out for you. Best wishes.

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 through 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 configuration, 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

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 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

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Bob,

Thanks for the info. I've seen two colorectal surgeons and both want to try more biofeedback but agree surgery may be an option. This is such a rare situation, I think no one knows for sure what's best and the 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

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 gotten worse from all the laxatives and enemas. Were you offered biofeedback? In any event, I know it was a tough decision, but glad to hear it was the right one!

Michael

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

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 Cedars-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 being 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 every place is well served by experienced gastroenterologists 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 situation before, it's likely to be there.

Best of luck,

Dave

Good albeit great advice from Dave, Bill, and Bob. Research... I might add, however, before considering a bag, get your hands on a wafer and bag and attach it at your belt line. A faux system like that will give you great depth in knowing how you can manage something like wearing an external appliance. I wish I had that kind of time before my emergency surgery. Boy, it sucks. But you do adjust to it. You seem like a practical fella... do this. Samples are free from any vendor... Hollister... Convatec... 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 severe head trip, emotionally and physically. Then, as if wearing one alone wasn't enough, fill the bag with water... try sleeping with it... try emptying it... Go out with this Nerf football attached to your side... It will definitely help you decide one of two evils. People will agree it's a life changer. But if you had, say, an internal option... hidden... boy, I'd grab that fix without blinking an eye. Good luck. Keep us posted... keep questioning and asking... And do find the best place, hospital, and surgeon you can while you have time.

I've had an ileostomy and have 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; I 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 professional bodybuilders with ileostomies/colostomies, so no, having one won't stop you. Health problems could, but that's for doctors to advise on.

I wouldn't presume to advise you re the prospect of having ileostomy surgery.  However, I can relate how mine has impacted my life.  Before the surgery, which I had in 1964, I was hospitalized for a total of five months and in constant, acute pain.  Once i got through the operation and recovered, my activity level simply picked back up again as i became accustomed to it.  I married, had two children, got an advanced degree, had a successful professional life, became a runner, and generally lived an otherwise normal life (except for my secret belly bag, of course).  Now, at the age of 77, I've commenced strength training.  I'm at the gym at 4:30 AM every weekday morning.  It's nothing like what you described re body building, but I mean only to convey that a post-ileostomy active life is still there for you.  In other words, it's not the end of the world once you accept it psychologically.  In my prime, I was running about 25 miles per week.  As recently as a few years ago, I ran 10Ks.  In sum, you can still be active with an ileostomy.

Hey Michael,

I just saw Henry's reply above and wonder how you're making out? Having read the posts after my last, I have to say what Warrior suggested was brilliant. Wearing a bag before you have to will really give you a feel for the best it can be if you go the ostomy route. You won't get a sense of any skin problems associated with it or any of the weird issues you read about on here.....but you'll experience a good 80% of what it's going to be like if you end up getting one. Just remember that folks like Henry (and I'm incredibly happy for him) are at one end of the spectrum of how this can turn out for you and folks like myself (short gutted, always liquid output, empty my bag 15 to 30 times a day) are at the other extreme. Where you'll wind up all depends on what they find when they go in and where they decide to disconnect your bowels. The further away from your rectum they disconnect you, the less normal your life will be. So the more confident the docs are about the specifics of your ostomy operation, the better you can estimate your outcome. I don't envy you and the choice you have to make, but at least it's YOUR choice.....but I really do hope if you do it, you end up a Henry and not a Bob. Please let us know how this works out for you!

Regards,

Bob