Gastroparesis Online Support Group

Hey everyone! I was diagnosed with idiopathic gastroparesis earlier this year. I have tried every combination of medications available in the US and am now looking into the limited surgery options available due to the severe state of my disease. I am 23 and living in Atlanta, GA by myself I went to the first gastroenterologist I could look up, but I would like to see someone who specializes in this disease for my surgery recommendations. Does anyone have first hand recommendations? ....Mayo Clinic, Temple Digestive Disease Center?

Thank you everyone!

We don't have the money to be able to afford a specialist. not to mention we don't live in a large city so we are kinda limited. My husband does see a Gastrointerologist, but I don't know of any specialist just for Gastroparesis. My husband has had it for 8 years and there is not a whole lot of research or anything related to GP. It's limited, but as more and more people are affected by it, I am sure that more research would be done in the future, but that does nothing for now. Check out my other posts for more information and don't hesitate to message me with any questions. Welcome to the forum!

I just got my appointment for Temple University Hospital. I have heard they are the best but with my other health issues I am afraid I can't get included in any trials.

I was initally going to see Parkman at Temple, but now am glad I didn't. One of the ladies on another support site has said that he and his team, while being very knowledgable about GP, are not good if you run out of options. They are really only looking for people who fit into their trials for the pacer. If you don't, you aren't any use to them and they kind of push you to the side. I see Dr. Saddler at GWU and Dr. Brody for the workup for surgery for the pacer. Both are very nice and seem to be very knowledgable. Saddler is looking at other options for me in case my insurance denies the pacer.

Well I went to my week long tests at Temple University Hospital in Philadelphia. They did a full day of testing for gastric reflux which I already knew I had. I get the feeling that since the Botox didn't help that the pacer wouldn't either. I had my doctor write and say I will be able to work until I can get this under control but they are trying to stop my short term disability. I have no hope that Temple will be able to help but they did find a gastric diverticulum that may be what is cauing the pain.

I went through seven doctors before I found one who could help me, after trying tons of medications. I finally found a doctor who specializes in research for gastroparesis. I have idiopathic as well. He is out of your state though. If you are willing to travel, email me and I'll give you his information and some other information. Thanks, hope you feel well today!!

Hi,

My daughter has been dx'd with idiopathic gp. She just had a g-j tube put in, but is constantly vomiting and in severe pain. No one here in SC seems to know what to do for her. Does anyone have any ideas or the person who wrote about the dr she found that she liked, could you send back name & address of this dr. We are lost and not sure what to do right now. Thanks, Sally

Post edited by: slbphoenix, at: 03/30/2011 01:39 PM

Does your daughter eat anything by mouth? If not and she is still vomiting maybe the rate on the feeding pump is too high or she needs a different brand of nutritional formula?

G-PACT has a website and on it they list doctors that treat gastroparesis by state. I hope she feels better today.

Thank you for writing. My daughter's g-j tube is not working and meds & formula are backing up into her stomach and she vomits up. The dr's who put in the g-j tube have refused her any further care because her case is so complicated. She will see an endocrinologist the end of the month because we feel something is going on there. She runs fevers off/on, has drainage from the g tube going to stomach and frequent stomach pain. She is not defecating either and she has lost 9 lbs since they took out the picc line. She will see her dietitian next Monday so perhaps they can help. Will keep you all updated. Sally Brown

My 15 year old daughter was dx this January with post-viral gastroparesis. It appears that she is as sick as you your daughter. After getting infections in 2 pic lines she also now has a gj tube. She got the surgery 4 weeks ago and it got clogged 3 times so far. They just switched her to a J tube so nothing goes into her stomach at all and they switched formula to vivonex. As with your daughter she has been completely dibilitated including continued vomiting, nausea, constipation,pain and lethargy. After being out of school for 3 months she is just starting to go back to school a few days/week. We are also at our wits end and wonder if we should be looking into other doctors/options. It's so hard to know if you should just trust your doctors or look further. She is so upset and stressed about all of this. How old is your daughter. Mine is looking for a support group to help her and we have been unable to find one.