I've had gastroparesis for over 3 years, mine started after a diagnosis of rectal cancer (squamous cell carcinoma), had 2 kinds of chemo and 25 radiation treatments, the chemo caused a rare blood disease called TTP, I had 3 treatments of plasma fresis which was not working so they did experimental drug (Rituxin) for my TTP, which shut my kidneys down and caused conjestive heart failure, I was on dialysis for 11 months, Finally went to Cleveland Clinic . Height 5"10 weighed 172 lbs at start of diagnosis, within the year I was down to 95 lbs. I figured I was dying so refused a j tube. For some reason I am still here, I spent most of 2010 and half of 2011 in the hospital, With the severe gastroparesis, I have taken all the medicines, nothing works. It's been 3 and half years and I am just now back up to 130lbs. (which is still really thin for my height) Just to let everyone know that the side effects from reglan are terrible, I would not suggest anyone take it, it has caused permnanat blurred vision and many other side effects. Also was on Nexium, about a year later I missed 2 days doses of my nexium tablets and my vomiting seemed to subside some, come to find out that Nexium was contributing to my some of my sickness, my Dr. said that 2% of people who take nexium have severe vomitting as a side effect. I have a few good days, and then I have spans of days or even up to 1.5 weeks that I can't function other than go the the bathroom, sit in my recliner, (more bad days than good ones) I don't want to eat because I don't want to vomit anymore, I drink ensure (at least 4 per day and take a chewable gummy vitamin). My Kidney Dr. writes me rx's for vitamin D rx strength. I have had 2 gastric emptying studies a year apart and the last one I had the results were worse than the first one. I have had several endoscopys, colonoscopys, breathe hydrogen test. The Dr.'s just tell me there is no cure for this diagnosis. I am at my wits end. I am sick and tired of being sick and tired. I am currently on SSDI and also long term disability, actually am up for a review on my Long Term, so we shall see what happens.
This discussion is related to Gastroparesis