Struggling with Decision - Colostomy vs. Alternative Treatments for Neurogenic Bowel

Right now I am dealing with a life-changing decision on whether to get a colostomy or just try to figure something else out like diet or ???

You see, I have a condition from a spinal cord injury at work that happened 27 years ago. I have a neurogenic bowel, which is basically a flaccid bowel! On a good note, I am walking and for the most part very active. The downside is the bowel issues! With no feeling in the rectum and it being loose and flaccid, I have frequent accidents, but mainly when stool is loose, which seems to be getting worse as I age.

My doctor has already okayed the surgery, but I am not sure I have tried everything I can. Although, I do feel that I have, and this might be the last-ditch effort to get a better quality of life. Normally I can take meds like loperamide or bismuth, and that buys me about a week or two of possibly no accidents. But when it hits, it's like a major blowout and it could last for days.

I am here to hopefully get some advice and support as my marriage has recently dissolved and my kids are all grown, so I do not have a very good support system. Let alone, as we all know, it's not exactly something you want to talk about. 

Thanks

I had a similar situation after chemo and radiation for rectal cancer to the point I had to wear adult diapers all the time. Have had a colostomy since August and my life is so much better.

It would be life-changing for the better. There are many survivors on here that lead a normal life.

I learned something new today, I'll be damned. 😁 My grandson had spinal cord surgery last year and his bowels now get impacted to the point he has to go in and get flushed out. I just thought it was a new issue but not related. Anyway, if it were me and I'm a gambling man by nature (Sixteen Candles reference) 😁, I'd take a colostomy bag over having to take medications constantly or deal with crapping my pants. Good luck with your decision.

Hi Broken Pipes (love the handle!), I spent decades with undiagnosed colonic inertia, which basically means that the colon doesn't push the stool along the way it should. I had to take massive amounts of laxatives, which often resulted in bowel movements that were hard to or impossible to control, so something like what you are dealing with. I spent years resisting ostomy surgery, and now after being an ostomate for nearly four and a half years, I can only say I wish I had done it sooner. It has changed my life for the better in so many ways. One thing the ostomy does is put you back in control of your bowels, instead of them controlling you. It's a big decision, and maybe not the right one for everyone, but it sure was for me. Have you talked to your doctor about the possibility of a reversal if things don't work out well?

Terry

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Hi, thank you for sharing. As far as reversal goes, that would not be an option because I wouldn't want to come back to the way it is now. And so far, after hearing from you all, this really makes a lot of sense to gain back some measure of QOL. After hearing what you said about still not pushing along the way it should or once had, I am pretty sure I have a similar issue. Along with the paralysis to even make things better! Or worse! However!

That is good to hear that your QOL has turned around. I actually turned 30 in the hospital after my SCI, and when it was all new, I had to wear those dang baby bottom wraps! Talk about belittling! So for many years after I learned to deal with it, I had some sort of freedom with the occasional incontinence. Or maybe I just blocked out the bad times over the last 27 years! But I have noticed in the past year and a half that accidents seem to have gotten worse. Thanks again for the reply.

Thank you! I am beginning to think you are right.

I have never had to get flushed out, and quite frankly, I don't think I could because of having a flaccid bowel. But I am grateful to be able to walk and do most activities after my SCI. Hope your grandson figures out what is going on.

Hi there! So glad you are on here to get opinions and others' experiences! I had a birth defect, and as a baby, they went to correct it but cut my sphincter muscle. As a result, I dealt with incontinence for many years, all throughout school, having to bring a change of clothes as well as wearing diapers, getting special bathroom privileges, etc. It was a nightmare! In my 20s, I'd had enough and decided to find out what my options were. I went with the colostomy and am so glad I did! I had the option to reverse it, but I never wanted to go back to what I had been dealing with, like you said. It's not perfect, but my QOL is SO much better, not to mention my social life! Get all the information you can and ask all the questions you need.

You've probably tried more fiber in your diet and bulking foods...

Sorry to hear about your marriage. Best wishes!

Wow! So sorry to hear about that, Night Owl. My heart breaks that you had to go through that as a child and through your teens. So happy for you that you found a way to get a better QOL. It sounds like it made a HUGE improvement in your life. You must have felt like a prisoner breaking out of prison! The best way for me to describe my emotions is that I feel like a prisoner in my own body!
Thanks for your reply.

Do not get a colostomy because you have neurogenic bowels. I'm a quadriplegic, got shot while in combat in Iraq 20 years ago. I have both neurogenic bowels and bladder. There's absolutely no reason to get this life-changing (for the worse when not an emergency) ostomy. You can fix that easily with a change of diet. Low carbs, less than 40g, no sugar, no grains, no nuts, no seed oils whatsoever, no dairy but butter, heavy cream, hard cheese, 3/4 cup full-fat yogurt a day. If you change your diet you will be just fine.

Now you have to ask yourself, "Do I want to be healthy, have all my organs in place, live a normal life" or "I don't care, I want to eat anything I want, I want to depend on an ostomy my whole life and deal with leakages, skin infections, public embarrassment (when gas gets out), be extra cautious with everything I do because I can rip open, tear up, lose the flange, bag, etc. life" then by all means go get an ostomy.

Only you can fix that. Doctors will tell you there's nothing you can do because they want that fat paycheck, they don't care about you in reality, they care about the $$ you are going to provide them.

If you need more advice don't hesitate to contact me.

I got this stupid ileostomy (oh it's for the best, life-changing and easy for you) lie I was told. Because I have a sacral ulcer, they didn't want me to get poo 💩 in there. So I had it done, what do you know, my stomach now is all but messed up, I had slow gastric emptying to begin with because of my SCI injury, this stupid thing now made me almost have gastroparesis. I can't eat but 1 hardly 2 small meals a day even then my stomach is full, bloated, gas, pain, etc. I have reversed the bloating and gas with diet but the epigastric pain and early satiety is the same. I'm 2x screwed for life, I can't reverse it, because that would mean more intestine manipulation and more scar tissue, furthering my stomach issues to the point I'd probably have my stomach removed and be tube-fed for life too. This is no joke, fix your diet it'll fix your life.

This ain't the magic pill everyone praises (unless you have a serious condition that warrants it, colon cancer, ruptured intestines, etc.) U.C., IBS, etc. is not warranted. That too is fixed with a proper human diet.

Don't blindly trust what your doctor tells you, they ain't God, that's their job, and they will hardly work with you to find a realistic way of fixing your issue. All about the Benjamins.

Good luck 🙏

I would like to point out:

There is a vast difference between an ileostomy and a colostomy, and how much small intestine or colon you have left.

I have a colostomy due to migrating hernia mesh that punctured my colon. At first, yes! I was pissed. Hated it.

I discovered this website. After reading many member stories, I readjusted my perspective. We just poop differently. It's not the end of the world.

As the months rolled by, I became proficient at changing the base plate (wafer) and how to care for my stoma. Learned it all here from my fellow Ostemate warriors. I was offered reversal surgery but refused.

An ileostomy is very different. Output is mostly liquid and acidic. It's hard to avoid leaks, and caring for it is time-consuming. In spite of the extra work an ileostomy requires, people do have a good quality of life with it.

A change of diet might work. But could you stay on that diet long term? You could try the diet and see what happens, then reconsider your options.

We are all here to help and lend an experienced, sympathetic ear.

Keep us posted on your decision and results.

Good luck.

A proper human diet can be sustained for life. There's a community for that if you are interested. Remember, 1,000 or even a bit longer, Homo sapiens sapiens didn't eat sugar, carbs, modified fruits if any, veggies, seed oils, etc. etc. Humans thrived by just eating meat (any kind), eggs, and probably that's it. Maybe a fruit here and there or honey or a specific non-modified grain, but those were just to not starve. Millions of years have humans thrived with no cancer or any disease you can name. As soon as we started introducing food into our DNA that wasn't meant for us to consume, bam, all kinds of weird diseases. Food for thought 😁

Thank you for your opinions. That's exactly why I am here, to hear what people have to say in their own words.

Vishnu, I assume that because you are a quad, you have a reflexic bowel condition? My injury level is L-1, and I have the areflexic, which is a flaccid bowel condition, so my sphincter is wide open! So anytime I have stool in the chamber, it just comes out, but mainly when it is loose stool. Keep in mind that I am ambulatory and walking with no issues; therefore, it causes more issues with the bowels. I have been dealing with this for almost half my life now, and it has recently, in the last year and a half, gotten worse. I am 57 and in very good health other than the bowel limitations. At this point in my life, I feel that it's inevitable that I will end up with a bag. I am tired of worrying about when I might have an accident in public, on a flight, or at work. The more and more I think on this, I feel it is the best option for me. Plus, I can't even imagine needing one of my kids to wipe my ass someday!

And trust me, I have tried diet, meds, and the next thing would be anal irrigation with Peristeen. I just want to get some freedom back and get back out on the road, camping across America in my RV.

But seriously, I do appreciate your words and opinions.

Thanks for the opinion, Beachboy. I'm a beach boy too! SoCal. lol

I have had the inguinal hernia surgery with mesh. When I was having firm bowel movements, it felt like I was being cut from the inside out where my hernia operation was. Sometimes it hurt so bad I thought I was going to pass out! Several MRI and X-rays and the doctor can't find anything wrong. It would be nice to never have to go through that pain again!

Hello Broken Pipes.
Thank you for this thread and thanks to everyone who has replied.
It takes me back to when I was contemplating the same decision in the same sort of circumstances.
We all need to make these sorts of decisions based on our own perceptions and it is probably a good idea to have as many alternative perspectives to consider as possible.
I cannot add a lot more to the conversation than what has already been said, so I'll just share with you that my own decision was to go for a stoma. I think the main reason was that I felt that it would be much easier to cope with the shit from the front rather than the bottom. A secondary reason would be that I have a firm belief that when life becomes too shitty for me, I will opt for a SOD (Self-Organised Death). 

Life with a stoma has it's ups and downs but I can honestly say that it has improved the management of my waste beyond recognition. I was offered a reversal some years ago but refused on the grounds that I did not want to go back to how it was previously.
Upon reading your responses to peoples opinions on this subject, it seems to me that you are already well on the way to making up your mind about this issue.

So, I would just like to wish you well in  whatever you decide.
Best wishes

Bill

Hi there

For what it's worth, pick up some psyllium husk. I found it useful when I needed it.

https://www.medicalnewstoday.com/articles/318707

Psyllium husk comes in several different forms, which I understand depends on how much they are refined.
I could only take the one marketed as Meta Mucil, which worked (and still works) quite well for me.
Best wishes

Bill

Hi Brokenpipes, I've had an ileo for 30 some years due to UC/Crohn's disease. I've never had a bag rip or fall off. I've only had 2 public experiences of the plastic clip breaking and poop on my shoes, and both times were my fault as I used the clips for too long. After I got my ostomy, I live a normal life of working 40 hours a week, riding ATVs on trails, deer hunting, and trips when my daughter played hockey. The learning curve is steep, but with the products nowadays and all the info on the internet, it doesn't take long to figure things out. Good luck.

G-Day Broken Pipes, Welcome. I also had a couple of decades of having to wear diapers and accidents at night, it's degrading. Three years ago I decided to go for a full stoma operation and got my butt stitched up. I wish I had done it 20 years ago. I now love my stoma and life is 100%. I also save a packet on toilet paper LOL. Make your decision BP but if I were you I would be going for the stoma. Regards, IGGIE

Haha! I never knew you can get your butt stuck up!

Yes, it is very degrading wearing the diapers! Definitely makes you feel like less of a human!

It sounds like once you get dialed in with the bag, issues are not as frequent. My concern is definitely thinking about aging with the condition I have. I figure I have about 20 years left, and I would rather spend that time not worrying so much about bowel accidents and spend more time traveling and seeing the world. And hopefully, eventually find a travel partner to share the rest of the time with. It will definitely take a very understanding woman to put up with me and all my issues! Lol

Hey Beachboy, I need to speak up in defense of ileostomies! There are some people with ileos who have problems, but just like colostomies, everyone is different and it isn't fair to make sweeping statements about them. I have had both, so I know of what I speak. I function very well with my ileo, have no problems with maintenance, can't even remember the last time I had a leak, and change my pouch once a week, but can even go longer. I eat everything, no restrictions, and my output is sometimes thick, sometimes thin, but it's not an issue. The only real difference for me is that I empty more often than someone with a colostomy. I have an excellent quality of life. I am not rare in this either. Clearly, there are many misconceptions about ileostomies!

Cheers,

Terry

Hi again, glad if this was helpful. I should also add that I started out with a colostomy, but it was not successful, as my colon still did not function properly to push the stool out through the stoma. That was when they finally conceded that it was my colon that was the problem, and decided to remove my colon and give me an ileostomy. That is what changed things for the better. I am functioning very well with the ileo. Best of luck with your decision!

Terry

Kudos, Terry. Not all ileos are the same, for sure. I seldom have any leaks, and my stool is the consistency of thick oatmeal. Not liquid at all anymore. Unless I forget to take my 2 mg of loperamide every evening. Even then, leaks are not an issue. I often go seven days before a change. My ileostomy hasn't kept me from leading an active life. Hell, I even know a guy in the area here that climbed Mt. Everest with an ileostomy. The only thing that holds us back is ourselves. But again, everyone is different. :-)

Daniel

Sir, you have nothing I haven't seen before. Remember, I go to the VA hospital; I see things private hospitals have no clue exist. You have NOT tried a PHD, because you wouldn't have had a single blowout episode. I have an ileostomy that, for everyone else or 99% maybe, has to be dumping poo every 4 or 6 hours, or 2 to 3 times a day or more. I barely get 2/3 of the bag full the entire DAY. Why? Because the food I eat gets absorbed into the system, not rotting in my intestines just waiting to be expelled at my next blowout or bowel movement. I can't stress it enough, ileostomy is worse than a colostomy, and I don't get that bag even half full. I eat like a hog but have nothing to throw out, maybe excess water because I drink more than 96 oz of water daily.

Like I said, your problem is one of the easiest to care for. If you want to try something to harden your stool, I can send you a jug of Banatrol. Brand new, it is RX, but I don't need it 🙏. Don't fall into that ostomy trap.

Absolutely!

Visnu, I have tried so many different diets and when things seem like they are going good, POW! I get a case of loose stool out of nowhere! It has happened way too many times lately. I am not jumping into the colostomy surgery just yet. I am definitely open to trying a new diet if you would give me a menu to go by.

I have decided to give myself until the end of the year to come up with a decision and plan to do the research and ask questions. If it's as easy as a diet then that would be wonderful! But so far I am seriously thinking my last option is to bag it!

G-Day BP, If you're having a colostomy you probably won't need your butt stitched up, but with an ileostomy, if it's going to be permanent, then get your butt stitched or you will have a big problem with mucus still coming out of your butt hole, very messy. I got stitched up. Works in your favor if for some reason you have to go to jail, if you know what I mean. Regards, IGGIE

See, beats being dead... 😁😸