I have had problems all my life and just wondering if it could be related ? Also sorry I've been gone I've been sick.
This is a common phenomenon with respect to HMSN. Idiopathic constipation and diarrhea as well as what seems like small bladder, but is really a problem with the nerve which tells you to empty your bladder.
Welcome to CMT!
Hi,
My mother and I (both CMT1A) have also had bowel troubles our entire lives, sometimes flaring-up and sometimes quieting. I've had a number of Gastro doctors and tests that reveal no problems with the bowels themselves so they give the catch-all diagnosis of irritable bowel syndrome. Of course, none of these tests really look at nerve function and some of the digestive system is innervated by peripheral, myelinated nerves which are the ones affected by CMT. There are a number of CMT people that report bowel and digestive issues on forums and to their doctors so it stands to reason that it is likely a lesser-realized part of CMT. Knowing this may not help you much though because it doesn't change the treatment any. Provided you don't have other bowel issues (inflammatory problems - Crohns, IBD, etc) and have been diagnosed by a doctor, the treatments will be palliative only and the same as those for a functional bowel disorder like IBS.
You'll find gastrointestinal disturbances listed in Linda Crabtree's Signs and Symptoms of CMT (Linda has a wealth of knowledge from having CMT herself and working with many, many CMT people) and I've written briefly about it in my own CMT Blog.
Digestive problems are crappy. ;-) (pun intended)
As stated it is truly an issue with nerve signals; My youngest daughter potty trained pretty late compared to my other two children and used the same methods with her; But, I finally resigned myself she just couldn't tell when she needed to go until it was too late; I myself, when young child had accidents often, and learned to watch a clock and go empty when it had been a certain length of time so I would not have accidents; Even now, if I am going places I'm not sure I can get to the bathroom easily, I wear protective pads and sometimes depends(on long trips)So. bowel, digestive issues and incontinence can be related with CMT.Anything that rely on nerve signals and muscles weakening.
I did not seem to know when I was hungry so would wait too long to eat, then have low blood sugar issues. We have to think about everything we do b/c our autonomic nervous system is even affected.
I find for myself,it does help to eat small portions but more often and certain high proteins should be eaten in small quantities when mixing with complex carbohydrates; our digestive issues can cause an overload as metabolism isn't triggered and works slower.
Yes it sure is a CRAP shoot of problems! (punn also intended)
CM
Just like CM says, I had some issues with knowing when to go as a child (well, even as an adult, I guess) and now that she mentions it, I definitely have had problems with knowing when to eat. In high school I used to tell people I rarely felt hungry but when I did, I felt so hungry that I was too nauseated to eat! This was true. In my adulthood I learned to eat smaller meals more frequently. Usually I eat just enough to fill my stomach (like two fists worth of food) about every three hours. Basically five or six "meals" in a day. This has helped many of my digestive issues immensely. Of course it's much harder to do when you're not at home. And, I still have issues now and again. They're just not as frequent, or as bad like before I got a regimen that worked for me. Also, some foods I just can't tolerate and many of them are things everyone else is eating (garlic, olive oil, oats, turkey). Good grief!
Has any one found any meds that help. I have eaten small meals for years and don't have as many problems, but when I do it's extreme , was in hospital three days recently. Bentyl helps some. I go for colon/endoscopy tomorrow. Wish me luck.
I was very anxious to read the replies on this question. From the time I was young I would have these crushing episodes of bowel pain and diarrhea. They were frequent. I thought every child must be like this. All of my life I have been plagued with bouts of diarrhea. Some were uncontrollable and came with no warning.i never thought of this as a part of CMT. Doctors have always said IBS and sent me on my way. Now,I seem to have very little sensation. Fecal leaking and difficulty starting to urinate. Thank you for bringing this to light. No one has ever connected this to CMT. It makes more sense. Thank you.
l have been constipated my whole life from day 1. Seems like small bladder too, which has gotten better since l had a sling put in.
But my brother just had his large intestines removed from severe diarrhea for over 30 years. So go figure huh.
We do not know for sure what type our family is. Suspect it is CMT1X.
I use water kefir and milk kefir; yogurt and unprocessed foods as much as possible and this seems to have made things more manageable! Probiotics ( live enzymes and live god bacteria for good stomach bacteria/flora helps the digestive issues) If probiotics are sold and NOT in refrigeration, they are not LIVE and not affective!
Hey CoolMomma,
Sorry you've been sick, hope you're feeling a little better! Good to hear from you! We missed you!