Has anyone been diagnosed with this condition?

Im curious if anyone on this site has been diagnosed or knows about neurogenic bowel dysfunction/disorder?

Hello Gemini16.

Thank you so much for your post which I knew nothing about until I googled it today  (in response to your question).

This diagnosis involves a very specific cause of problems which can have several other potential causes. Hence, I think that perhaps there will be a limited number of people on here that have been diagnosed in this particular way.  However, there have been some contributors in the past who have Spina-Bifida who may have had this diagnosis. Perhaps, if they are still members, they will enter the conversation with a more personal and practical reply.

Best wishes

and thanks again for introducing me to  some new knowledge.

Bill 

And thank you for the info.  :)

Neurogenic bowel happens when the electrical impulse from the brain to the bowels is interrupted from a spinal cord injury, spina bifida or MS.  The impulse can be totally blocked or partially and misfire at times, causing too much activity or not enough.   I have spina bifida with neurogenic bowel and bladder.  I have a urinary ostomy and am considered incontinent both ways.  I have managed both since childhood and I'm 57 now.  That is a synopsis, but I would be happy to answer specific questions you may have.

Thank you for the information Tom.  I will Email you directly.  

I believe so, but mine doesn’t really have an official name yet

Whatever happened to me started in my early 20s. I was told back in Chicago. I had Gastro paresis and a form of ulcerative colitis, but tested Cleveland Clinic didn’t confirm either 10 years ago. I was a patient at UPMC for 2 years and had the best GI Dr there. When we moved to Ohio the Gi Dr at CC said he wanted to get me to 50 without another colonoscopy 🙄. But I was throwing up every few days and didn’t know why so I called to see if I could see my former Dr back in Pittsburgh but Mayo had snatched her up which wasn’t a big surprise bc she’s amazing but I was told the Dr who trained her was now the head of digestive disease at CC so I got an appt with him and after he’d run some of how own tests sent me over to motility GI who determined something created an autoimmune response in my body and attacked the nerves/muscles around my colon. It had prob had been 3 years since it had moved by the time I had it removed? But they’re seeing it happened to females starting in their early 20’s sometimes even late teen years. I did ask if there is a genetic link as I have a biological daughter. He told me they are seeing a familial pattern but haven’t discovered the actual genetic link yet. I signed over everything for them to use and share with other hospitals like Mayo. I don’t want my daughter or other women to go through what I went through, so I said learn as much from me as you can. 

Hi there - yes, I have autonomic polyneuropathies or some call it dysautomia and there are like 20 other names. Basically, something starts to go wrong and we all end up starting at one type of specialist and they never speak and realize it's all related even when we continue to bring it up. 😁

I do have a loop ileostomy and I also have several other digestive motility disorders. My issues also include my bladder, skin, nerves, eyes, etc. I hope that's helpful!

Delia, do you mind me asking how it affects your eyes?

Not at all! Unfortunately, I can't really tell you for sure because things keep changing, but at one point I was diagnosed with Alice in Wonderland Syndrome. I know it sounds made up, but nothing at all about it feels made up. It was a credible doctor from a research hospital. It happens before migraines and I was given timilol (blood pressure drop) to try to prevent it. It would usually happen right before a migraine and something worse like a bowel obstruction.

I also have other sensory/depth issues and struggle with light. So I use a cane or my hands to swim for balance or fall gracefully (🤕) and a hat if it's direct light until my eyes adjust. I know my pupils stay dilated a lot so I think that's part of it. 

Recently, I've had trouble see text but I'm being super stubborn about refusing to have one more problem so I'm ignoring it. 🙃 

I hope that's helpful! 

I see my migraine neuro tomorrow. Gotta ask about this Alice in Wonderland syndrome- haven’t googled yet, but is it like aura that comes before?. Sorry you’ve got one more thing going on now. 

When it happens I'm not even aware at first, but then it hits hard and if you have it you know it. It can be subtle or incredibly strong symptoms. The medical community isn't always kind about it so I just say I have sensory issues because so few know what I'm talking about. As long as I have my drops and my hat, I'm good! Also, keep in mind I have other autonomic issues with my skin or sound so that same direct sunlight feels like pins and needles. Most of the doctors ignored it and said I was fine, but it was a vestibular migraine specialist who was able to help me.

Here's a link to an article that explains it way better than I do! 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6276353/#:~:text=TAKE%2DHOME%20POINTS,most%20common%20cause%20in%20adults.