Gastroparesis... please share 2!!

[sam78]

Well I will be shocked as you know what. They had to close our thread it was so long!!!

Just wanted to peek back in.

Ughh spent another 9 days in the hospital with horrific pain. It was not fun. How do you treat pain without making gastroparesis worse.... UGHHHHH Anyways, I am home now, feeling better FINALLY... and knocking on wood too. I did lapse in taking my domperidone when I was feeling good, and unfortunately it was great while it lasted but definetly got me in trouble. My doctor told me that certainly twice a day was not enough to maintain normal rhythm of your stomach. Guess I will be good and take it four times a day <sigh>.

Pika, why does your doctor only let you use it for nausea?? If you are having bloating from slow digestion, it wont benefit you only taking it random, you gotta prevent it. I would demand an answer, that just isnt right unless yours is from something else and not gastroparesis. Might be time for new doc that understands GP/
Good to hear from you all GP sufferers.

[Pika]

Sam, sorry to hear about your admission. I was like dying on Monday because I had my breakfast!

She don't let me take the Motilium (Domperidone) because the gastroscopy, colonoscopy and all the biopsy came back normal. No bugs in my tummy. She said she can order a lactose and fructose breath tests for me. I don't understand why she still wants me to go through all these tests? The test is normal then they left me as it is. If the test turn out abnormal, they said was artifact and also left me as it is.

I am very miserable. I cry everyday. She is my second gastro Dr. She only offer me an iron infusion and Nexium. Is all these she can offer me? All that I want is my tummy can flatten a little bit then I can breath easily. I am not sure my dizziness is caused by blood sugar too low or stomach too empty? All I know I live inside the spaceship!

Take care, everyone.

[sam78]

Well unfortunately Pika, sounds like you have fallen into the hands of someone that does not have a good understanding of GP. GP doesnt show on any of the tests you have done. Only way to diagnose it is to do a gastric emptying scan. Since you scopes and biopsy were negative, that SHOULD give her more of a reason to think of GP and want to use domperidone. Sorry. Hang in there and I would try to take the domperidone as much as you can.

[Pika]

Sam, thanks for the understanding. I would follow your advise and I think I didn't have anymore choice either.

This morning has the same thing. I don't care how long that I can live now. I just want a functional life.... When Domperidone finish, I'll ask for sleeping pill to sleep. No GP, no anxiety and no complaint.......

Life is so miserable.....

[Drk76]

Hello all!

I have also been diagnosed with Gastroparesis. My score on the emptying test four years ago was 115. High end for the 60-90 norm, but not enough for my gastroenterologist to diagnose. He diagnosed me with colitus and GERD at that point and put me on AciPhex (My god I love that pill), famantodine and told me colitis goes away on its own. The problems I had then, eventually got better. This past summer, I started getting sick on and off for 3-4 days at a time. It was frustrating but another endo/colonoscopy showed nothing really abnormal. Actually EVERYTHIGN showed nothing was abnormal and I was convinced it was in my head! Finally, after ending up in the hospital due to a 5 day vomiting cycle, he re-did the emptying scan and it was at 265. >.< it got markidly worse than 4 years ago. I'm at the point that nothing seems to pass and for 3.5 weeks i've eaten VERY little else than Cream of Wheat. Thank goodness I don't hate it.

I tried Reglan 4 years ago and the side effects were very bothersome. Twitching, excitability, heart racing etc etc. My doc remembered this and finally prescribed the domperidone. It's taking it's sweet time getting here -I was told 4 weeks tops. I'm averaging 5lbs a week weight loss right now, thank goodness I had some weight to lose or I'd be in trouble right now.

I've read every single page of the old thread and one thing I didn't see addressed was the persistant nausea and treatment for THAT. I understand the way Gastroparesis works and I have a long road ahead of me finding foods I can eat and amts that work for me. The problem is that I have no choice but to work every day. I'm a single mom of 2 boys and if I don't work, bills are nto paid. I went to my PCP originally in Oct and he prescribed me Hydroxyzine (Vistiral). I took it as needed when the vomiting cycles became more than 2 or 3 hrs. At first it totally made me sedated for at least 48 hrs after taking it. Now I can tolerate it as long as I have about 8 hrs of sleep. It seems to help wtih the nausea.

I am hopeful somedays and entirely discouraged others. I'm only 31 years young and the prospect of dealing with this forever is daunting, to say the least. I actually cried when I read these boards. A small part of me still felt this was all in my head. My gastro doc was soo vigilant until he found the diagnosis and now I feel very alone and without the answers I am seeking desperately.

I'm concerned about the Domperidone as the doc only said it woudl cause dry mouth and headaches. Does it have any other effects that anyone is aware of? I'm also trying to grasp why it isn't available in the U.S. ?

Also, has anyone heard anything regarding TZP-102 ? It's the new drug due for 2010 as a treatment for Gastroparesis. Perhaps for those that aren't able to tolerate Reglan or don't do well with Domperidone?

Thanks for reading, I've felt alone for so long that this is quite new to me.. knowing that others feel as I do.