Long-Term Crohn's Complications: Seeking Advice and Experiences

I have Crohn's for 43 years (Oh boy I am getting old!!) Bowel resection in my late teens, illeostomy for last 23 years. About 2 years ago I blew a pupil and had left sided weakness. At the time was diagnosed with myasthenia. Since this fall (maybe even earlier) I have been experiencing extreme fatigue and increasing left sided weakness, double vision, difficulty swallowing , choking on fluids with difficulty speaking at times as well a many other odd and inconsistent symptoms. I am having a hard time getting answers about what is going on. Does anyone have any suggestions?

That sounds very serious -- and not something I'd necessarily attribute to ileo/gut from what I've read. Keep at your doctor to find out what is going on.

Not sure if it's ostomy related but, if it were me I'd harrass the docs until I got a legitimate answer!  Please keep us informed!

Hi, I would think it sounds like the progression of the myasthenia?

If not then, it certainly needs looking at, good luck with getting your answers, Rachel xx

I was diagnosed with MS in June of 2009.  I have managed diverticulitis for many decades.  After starting on injectable interferon for the MS, I had a bout of diverticulitis that wouldn't resolve, and wound up with abscesses, and a colostomy.  I have wondered about the interaction of MS and bowel issues.  Colitis is an immune disease, as is MS.  Wonder about that connection.

I think when our health is compromised in one way, it leaves the door open for other issues.  That's why I am trying to get as healthy as possible before my reconnection, which might be this summer....

Jayne

Words of Encouragement from Ostomy Advocates I Hollister

Hi Jayne I would agree with you there .... 12 yrs ago I was perfectly fit and healthy with a small hole that shouldn't have been there, I am now a physical and rather 'mental' wreck!

i'm not a nurse which is what this thread is really for but have them check the status of your peristalsis motility.  Sometimes long term side affects of anti-diarheals can slow down or stop the digestive system (which starts at swallowing).

It's a needle in the haystack now. The docs are gonna need your help with this so document as much as you can for them ok?

Mary Ellen



RE: your symptoms:  it may be a progression or exacerbation of the myasthenia gravis.  The best advice is to see a neurologist, or have your primary physician refer you to one if you haven't seen one.

Good luck!

Does anyone have any information on crohn's disease and ms. I recently saw GI guy and learned there is an increased incidence of ms with Crohn's. Can anyone direct me to an info source? Many thanks!