Loss of intestinal function

[imnotmaggie]

My ependymoma was C3-T1 and removed 6/11/07. Post surgery I had dificulty with bowel movements and was put on five medications to help although the problems continued until the narcotics were decreased. I had trouble controling my bladder and bowels and felt like a toddler potty training all over again. A month post surgery it was determined that my stomach was no longer contracting and my intestines weren't working properly. I was given a pharmacy of medicine to clear the yeast and fungus in my stomach and put on reglan to help keep things moving. I took the reglan for nearly 4 years but just couldn't handle the muscle spasms and anxious feeling the reglan caused. My NS doesn't know what to do to get my digestive tract working again & I've seen 3 GI docs all of which shake their head and say they have no idea how to fix this although I'm certain that since it's nerve damage its not reversable but surely there is something that can help. The last doctor put me on miralax to jump start my system but I find that it only works part of the time and sometimes works too well and I'm afraid I won't make it to the bathroom in time because I still don't have full control in that area.

Has anyone experienced anything like this? If so, what have you done to relieve the discomfort. I feel full and bloated all the time no matter how long it's been since I've eaten.

[kansasmom]

My son has some neurogenic bowel and bladder issues, though not the same as yours because his injury is lower. Miralax seems to be the best solution, though, as you say, it's hard to get it right. In fact it's been C's biggest frustration with this whole deal - even more than issues with walking.

You might find this info from the Consortium for Spinal Cord Medicine useful. Download their free pdf on Neurogenic Bowel www.scicpg.org/cpg_cons.htm - it contains a lot of info and some of it may be helpful for you. They also have information on Autonomic Dysreflexia which was mentioned on another thread recently. That could be relevant for anyone with a higher level injury.

I hope you get some help for this - sounds like something bad to be stuck with, and scary.

[imnotmaggie]

Just thought I would update this thread. I finally after a year of HORRIBLE GI doctors went out of network back to my post-op GI doctor and he had new ideas and before I could even go over my list of questions beat me to them. He even remembered my case and it had been four plus years since I had seen him. AMAZING! He sent me to a GI surgeon to discuss a gastric pacemaker however she ended up doing a pyloroplasty in July this year. I just got the results of my 3 month follow up gastric emptying study and for the first time in 5 years my stomach empties normally. I feel great even though now we have to bulk up my fiber because my body doesn't know how to handle this new "feature". For those with high level tumors that have suffered gastroparesis I highly recommend this procedure. It's amazing how different I feel and so good to not have to worry about taking medicine to make my stomach half way function.