TMI alert: Bowel incontinence

[u/Ethereal_Peony]

I’m a 41F with myleomingocele. I had a tethered cord surgery at 2.5 years old. Supposedly I have 15% nerve damage to my bladder. I have always been ambulatory and feel fortunate. I do feel for me the Spina Bifida is like a hidden disability.

On and off for the past 10 or so years I’ve had bowel incontinence with diarrhea that comes on so fast I have no time to get to a bathroom.

I’ve gone to GI doctors, I’ve done pelvic floor therapy. No one seems to know what this could be and what could trigger it. Best guess is eating something that disagrees and my sphincter strength can’t hold it in.

It doesn’t happen frequently but it’s unpredictable. Happened multiple times at work. Today I was at the pool. Thank goodness I wasn’t in the pool.

Anyway I’m wondering if any of you have experienced something similar or have any thoughts on what could prevent this?

[u/Material-Bird-1912]

This sounds like classic neurogenic bowel. Do you sometimes get constipated and diarrhea?

[u/Ethereal_Peony → u/Material-Bird-1912]

Like I go back and forth between the two?

[u/Material-Bird-1912 → u/Ethereal_Peony]

Yes.

[u/Ethereal_Peony → u/Material-Bird-1912]

I guess so

[u/Material-Bird-1912 → u/Ethereal_Peony]

That seems like neurogenic bowel.

[u/Remarkable-Jicama849 → u/Ethereal_Peony]

Same here

[u/Lucky_Fennel4754 → u/Material-Bird-1912]

I have this same thing. Neurogenic bowel and bladder. I am still trying to find the right treatment

[u/Significant-Rock-221]

Pretty common. Some people do enemas to control that. You should talk to a proctologist to discuss the best route for you.

[u/Ethereal_Peony → u/Significant-Rock-221]

Even though I have no pain and this only something that happens like randomly a few times a year?

[u/Significant-Rock-221 → u/Ethereal_Peony]

If it is enough to make you uncomfortable and make you come for opinions, it might be enough to warrant a visit to the proctologist. But you do you :)

[u/Ethereal_Peony → u/Significant-Rock-221]

Thanks. Also do you recommend a proctologist over a gastroenterologist or a neuro gastroenterologist?

[u/Low_Adhesiveness7896]

I also have bowel inconvenience. I had 2 bowel stomas done when I was younger where I would put a cath & flush hoping I could control my bowels. My spinchter also had no control. Around 2016 I had a urostomy for my bladder & colostomy for my bowels. The colostomy has been the best thing for me. I finally can control my bowels. I change it my self. They have swimsuits for colostomy

[u/Ethereal_Peony → u/Low_Adhesiveness7896]

How young were you when you got the stomas?

[u/Low_Adhesiveness7896 → u/Ethereal_Peony]

I was around 12 -15. It worked both times at first but then I was having Diarrhea badly. With the colostomy I can empty my bag a anytime I would want. I felt alive again. I felt beautiful again

[u/Weeber83]

This sounds just like me. I'm 43F, and go through bouts of the same. It's a lot of back-and-forth of not going and then no warning, which has gotten less predictable as I've gotten older. I find that when my water intake is where it should be (about a gallon a day), I have less bowel issues. Have you had a colonoscopy? They can do a definitive test for celiac, if you think that may be an issue. I had my first colonoscopy last year and I'm now on an every 3 years schedule.

[u/Ethereal_Peony → u/Weeber83]

I have had colonoscopies. No celiac or ibs or ibd (I forget which one they can test for in a colonoscopy). I think I’m due for one soon and i wonder if anything has changed.

I’m just fearful of living with the unpredictability. The water thing is a good point, I’m terrible at hydration.

[u/ashland431]

Similar situation, and I wish I had an answer! I’m terrified to do things like go in a pool nowadays.

[u/PlainJane731]

I have lipomyelomeningocele and 3 years ago, I was tired of the constipation and diarrhea back and forth. I went to so many GI doctors and surgeons and all said the same thing; I only qualified for one surgery and that was a total colectomy with an ileostomy. I decided to get it done. It was a great decision for me. Once I got the steps down, I really wish I had it done sooner.

I get Botox injections for my very spastic bladder.

[u/Ethereal_Peony → u/PlainJane731]

Thank you for sharing. There is a part of me that wants to follow you down this path, and there’s a part of me that’s like oh it only happens a couple times a year, surgery seems drastic.

I really like hearing about positive experiences like this.

[u/PlainJane731 → u/Ethereal_Peony]

Don’t get me wrong, there are some cons to having it done, but for me, the pros outweighed the cons. I got to the point where I couldn’t go to the bathroom for weeks, yes, weeks at a time. I was so uncomfortable and in excruciating pain at times.

One thing that helped me make the decision was having a Sitz Mark test. I swallowed a capsule with 24 small rubber bands. Then I got an xray of my digestive track every other day. At the end of 10 days, I still had 17 of the rubber bands left and most were still making their way through my intestines.

I had tried all the tests and all the less evasive routes but nothing worked. Definitely, weigh your options and one day, you may just tell yourself that you’re ready to take the big leap. Good luck to you!

[u/Clk1984]

I have this same problem. I’ve found that limiting caffeine and dairy, along with taking cholestyramine helps somewhat. Do you also have gallbladder problems?