I am interested in dysmotility as I have suffered from it since the age of 4. I have already had a total colectomy and now my small intestines has lost it's motility as well. I have tried every drug currently available for treatment of this condition to no avail. Has anyone had this procedure (Gastric Pacemaker) done? If so, are you improving? Do you recommend it?
Try to write to Char--she was among the first to have it done and when I was considering it and then going through the process of having my insurance deny, then approve it, she is the one who helped me through. I go for my first surgical consulation on Thursday so I'll let you know how it goes.
Michelle
Thanks Michelle! I hope that the surgical consultation goes well. I will try to get ahold of Char and see what she has to say and if she recommends the procedure. One thing is for sure. I can't keep living like this!
I'm interested in the pace maker - I have no motility in the esophagus - delayed emptying of the stomach and very very minimal movement in the intestines. I've thought of having the colon removed but I've been told that because I've already had a foot of it taken - they wouldn't do any more unless they found out the small intestine worked better. Does anyone know if removing the Colon - even if the small intestine isn't much better - improves movement. My hypothesis is that just because it is more liquid - it would be easier to "coax" out - if you will.
Also - where is the pace maker put?
My dysmotility is caused by Systemic Sclerosis. I also am on narcotic pain meds which doesn't help. But I've had the tests that show the actual problem exists regardless of the meds.
I had my entire colon removed due to gastroparesis and GI Dysmotility Disorder, which is now Global. They believed upon doing the surgery that my small intestines would function better. While it did initially and my large intestines HAD to be removed regardless because it was terribly diseased and had no motility and absorbed no nutrients, I can not see a major benefit from it if the small intestines is not functioning properly. Since my surgery my small intestines has slowed to the point that I have no motility and have to take at least a half of a 30 day supply bottle of Miralax everyday just to go to the bathroom on a semi regular basis. The recovery from the surgery was extremely difficult and I had a lot of pain. It was NOT performed laproscopically, so I now have a scar from my pelvis to about 3 inches above my belly button. I also had a temporary ileostomy for six months and have a "bullet" scar from that as well. If you can avoid the total colectomy and have a pacemaker put in to speed up you movement instead, from what I have read and heard, it is definitely worth it and much less invasive. I hope this helped! Feel better soon!
--forgot to address the other issue about the pacemaker. I have heard some people have had more than one palced successfully in different regions from articles that I have read online. I am supposed to be getting on the list to have a temporary one placed to see if it works on me prior to the actual surgery. That is if my insurance company will cover it. Anyway, good luck! =P
Becareful not to jump into surgery becasue it seems like the last resort or the only hope you have left. everyone else who has wrote in seems so positive about surgery. I quess I have had a few drs who have jumped at the chance to do gastric surgery on me and I have paid the price for it. I know what it is like feeling like you will do anything for some relief but please, please do the research backgroung cks on the drs and dont let other people experince make your decisions on what is best for you, (not even me). you are the one who has to live with the outcome of what ever you choose so choose wisely. I have had this diease for over 10 years. I have had a total colonectomy, and from my throat down to what I have left of my small intes. doest work anymore either. But I had a light stroke they think from all of the med. I have been on. The reason I was on so much med was i have had so many surgeries. This is not a easy diease and there is no easy answers I just ask you truly think about this befor you go ahead. I really dont want to try and discourage you just think and pray about it please.
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