How many cases of slow motility might actually be Hirschsprung's Disease?

[ManagingbutStillSuffering]

Have you read of or heard any of your doctors mention Hirschsprung's Disease?  I just discovered the term online this morning as I found myself once again wondering if I could be living a better life than I have been over the past several years (i.e., since I put myself on a restricted vegetarian diet and started regularly taking kelp, magnesium, acidophilus, and myrrh supplements, among other lifestyle strategies, just to keep the operation of my bowels within manageable limits).

It seems, basically, it's a rare disorder in which the nerve cells that help to move one's stool along to eventually release it are missing in a segment of the colon.  The symptoms of this congenital condition may start at birth or come on as late as adulthood.  It requires surgery to correct it.  Since I only just read about this condition for the first time, I have yet to ask my doctor about it and be tested.  My symptoms didn't appear until the time of my high school graduation, so my parents and doctors naturally assumed they were brought on for psychological reasons.  I have dealt with the consequences stemming from my symptoms ever since, although I have at least learned to live a virtually normal life, with the help of the strategies I mentioned in the paragraph above, but I am still aware of the fact that I have basically learned to "live with an undiagnosed illness," as my teenage son's friend so aptly put it.  I can't help but wonder if I have finally found my (imminent) diagnosis.  I also can't help but wonder if this diagnosis might apply to many slow motility GI disorders, such as one I just read about on this website, posted in 2003.  


This discussion is related to Severe Gastrointestinal Motility Disorder.

[ManagingbutStillSuffering]

Hi, patient915.  (Would you mind if I called you, simply, "915"?)

Yes, it seems quite unlikely that I have Hirschsprung's, especially considering only about 1 in 5,000 people are afflicted with the disease and probably just a fraction of them remain undiagnosed until they become adults.  Although I would be relieved to finally know what the hell has been wrong with me all these years, since last week when I first read about Hirschsprung's I have been trying to adjust my expectations to align more closely with reality.

To answer your questions, I had a great deal of testing done, including a colonoscopy, about twenty years ago.  (Among a series of other doctors from whom I sought help for my condition) I saw a gastroenterologist regularly over the course of a year and a half.  My visits to him finally ended when he admitted, "I don't know what more I can do for you," and left me to continue searching for relief on my own.  This overall experience--and some similarly negative ones I had around that same time--led me to generally give up on doctors as a viable source of help in my life.  

But when I came across the articles and videos about Hirschsprung's Disease, my interest and intensity were sparked anew, and have since paid a visit to the office of my general practitioner to a gastroenterologist for the second time in my life.  Our first visit is now scheduled for the first of July.

I truly appreciate your concerned interest.  If you'd like, I will keep you posted on my progress.

Best,
Carlos

[patient915]

Welcome to the gastroenterology community!  It woud be very very rare for someone who has hirschsprung's disease to not be diagnosed as a baby and to not show symptoms until late teens.  You could ask your doctor about this, but I would recommend persuing other options first.  Have you had any testing done?  Have you had a colonoscopy?