Trying Octreotide again...

I am starting this blog about a year and a half late...but to quickly bring you up to speed - I have Gastroparesis. Last year from Jan-May I was diagnosed with the "flu" five times, and even ended up going to the ER when I had an episode of vomiting (and other fun things) more than 12 times in hours. It kept going, but honestly, I lost count after that.

I switched doctors, and visited specialists. Everyone ran the usual tests, my head, my heart, xrays and ultrasounds, blood tests and consultations - before running a gastric emptying study. Once I had a diagnosis of Gastroparesis, I was sent to see Dr. Toskes at Shands. He's fantatstic. My local GI, Dr. Feiner is awesome too. They both care, listen, and try to come up with solutions for me/with me.

I've tried a mix of different medications, none of which seemed to do much. Some made me worse, some made me have allergic reactions. Anti-nausea meds that make me more nausious (haha!) others that cover me in crazy bumps, and the one that actually worked makes me pass out. Whoops! The one medication I have documented proof that should work, Octreotide, didn't seem to make me better, in fact I felt a great deal worse. That could be coincidence though. I am going to give it another shot.

I tried it for 11 days, and stopped March 3rd because I was feeling pretty terrible - and was convinced it was because of the Octreotide.

My doctor suggested I give it another chance and try to deal with the symptoms a little longer than 11 days. Sometimes it gets worse before it gets better. The fact is during the small bowel monometry, Octreotide made my stomach move, which it was not doing prior to the injection, and after more than a year of not moving, I'm sure it does hurt when it starts up again. The good thing is, if it works, I get to eat a bit more. FINGERS CROSSED! (again)

My head hurts tonight and I feel absolutely exhausted.

I stopped taking the Bethenacol about a week ago. I was sure it was keeping me from getting sick so many times a day, every day. I am doing exactly the same as I was while on the Bethenacol, as I am doing not on it. So, I think now the reason I haven't been getting so sick all the time is because my diet is so very limited. I eat basically the same things every day - spoonful of peanut butter, an egg, some cheese, a few crackers, a slice of white bread, maybe some soup or "fake" (vegetarian) bacon, and lowfat frozen yogurt. I don't eat meat, or vegetables (with few exceptions - potatoes, acorn squash well cooked and sometimes portobello mushrooms) and I don't eat frut (except applesauce, pureed bananas and pureed peaches).

I've been out of work since March 8, and I'm certainly less stressed but not yet feeling much better. I have a few good hours here and there. I can handle about 3-4 hours of activity and then I'm pretty wiped out.

The Octreotide seemed to really make me very sleepy last time I tried it, so I can not imagine getting any more tired than I already am. Guess I will soon see. :-)