Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Idiopathic Gastroparesis/ Ehlers-Danlos Syndrome

deathofurheart
0 Recommendations

Hi everyone. I'm new here. I am interested in talking to anyone with gastroparesis caused by Ehlers-Danlos Syndrome. I was diagnosed with idiopathic gastroparesis a year ago and waiting on insurance to approve me for a pacemaker. I'm hopeful that it will help, but still remaining realistic about it. So I was wondering if it has helped anyone. Also, back in June I had my gallbladder removed because it failed. I didn't have any disease or stones. I've been looking for people with similar ailments. Any feedback is appreciated. Thank you. ^_^

~ Lori

Explore topics in this discussion:

MRSA Surgery Duragesic Hypermobile joints Intestinal pseudo-obstruction Nexium Phenergan Methadone Prevacid Gastroparesis Morphine Gastric pacemaker Oxycodone Delayed gastric emptying Prednisone Lupus Endometriosis Nausea and vomiting Reglan Dehydration Confusion Gallstones Fentanyl Diabetes Diverticulosis Oxycontin Constipation Pain Pacemaker Ehlers-Danlos syndrome

23 replies

FeelingStrangled

Wow. I had no idea all these health issues (nearsighted, heart murmur, teeth overcrowding, warp-speed IBS, esophageal motility problems, gallstones, wide scars and being a human Gumby) could be connected under one umbrella! I'm a little late to this discussion, but I was just diagnosed with EDS - type III last week because the "immobile" joints in my pelvis are not retightening after having given birth. I joined Inspire when I was pregnant because it really exaggerated my esophageal problem. (Had a hard time getting food to my stomach - took forever.) Over ten years ago, I also had my gallbladder removed because my stones had solidified over the 10 years I had attacks and the doctors told me to take Mylanta. I'm with Deathofurheart in that nutrition and comfort has worked the best for actually being able to eat and have energy.
Three questions:
1)Does anyone know of any GP, specialist or pediatrician anywhere in Texas that works with EDS patients?
2)Are there any good websites with discussion groups like this one for EDS? (I really like the people here on Inspire.)
3)No one has mentioned endometriosis. I was wondering if anyone else with EDS was lucky enough to have endo too?
Thanks for the links to the sites on genetic testing. Take care everyone.

debbie2027

Yes any suggestions would be great my meds don't help much and I hate the ER!

deathofurheart

That's awful! I'm sorry to hear that. I hope the doctors can help you. Best of luck to you. Feel free to message me any time if you'd like.

debbie2027

Well I have had 9 ankle surgeries due to the joints being so slack and have had been in and out of casts most of my life for numerous sprains. I have had alot of pain and aches since I was a teen and the TMJ surgery for my jaw hasn't helped. I have been thin most of my life ... But over the last year I have been really ill with really bad stomach bugs... (or I thought) Not sure how bad the GP is all the tests I have had are the CT's and PillCam Endoscope.
I do know that the dye on the CT never made it to the colon in 2 hours and showed that my stomach was very dilated. I have an appointment next week with an expert gastro dr.
So far none of the meds of worked and I scared cause I have been on reglan with Erythmycin for over 3 months and started having some tremors while I sleep.

deathofurheart

Better late than never! I am always happy to hear from anyone...especially since there seem to be so few of us. I have been diagnosed with I/II and III, and like you possibly vascular. How long have you been dealing with gastroparesis and is it mild or severe? If you need any help with your diet I would be more than happy to help you. In my experience I have not found a treatment for gastroparesis that has helped at all. I have tried the gastric pacemaker and countless medications...no help. The focus is more on nutrition and comfort. How advanced is your EDS? Thank you for replying and good luck to you. ^_^

debbie2027

A little late to this discussion but ...

I was just diagnosed with EDS type 3 and 8 waiting on tests to determine whether I have vascular type. I too came down with Gastroparesis and was sent to Emory were they made the connection of my joint mobility. Does this make a difference on the treatment of the GP? I am waiting on the gastro docs to treat me ... all I have seen is the genetics

deathofurheart

Well that's really lame that you were told that it didn't matter if you were diagnosed with Ehlers-Danlos Syndrome...that's kind of IMPORTANT! LOL! I'd recommend seeing a geneticist and getting diagnosed. There are several different forms of EDS, some worse than others. Sure there is no cure, but you can treat the symptoms. I made five trips to the ER last week and left half the time with some burst veins...yay...so I totally understand. Sucks being a "hard stick". So did you gallbladder fail as well? I thought about making another post about it because I cannot seem to find anyone else that had that exact thing happen to them. It was completely healthy. You should take a look at Gene Tests...has the best reviews on the various types of EDS.

http://www.ncbi.nlm.nih.gov/sites/GeneTests/review/disease/Ehlers%20Danlos? db=genetests&search_param=contains

Einstein

OMG. This sounds exactly like me. I have all the above mentioned GI problems, nearsightedness, bleeding, brusing, vein problems (collapse very easy) and have hypermobile joints and skin elasticity. joint pain too. Was told 8 years ago that I probably had EDS but there was no point in testing as there was nothing you could do. I have been looking for an underlying cause that would link all my various health problems and BINGO! Found it! Thanks for this posting!

Einstein

fedupwithEDS

My insurance won't buy Zofran, I've tried many times. Docs don't want to try tubes yet...that's why I think I'll try the University Hospital, maybe they'll be more informed about EDS. I was told by my gastro doc that pacers don't work with EDS. I think she's a quack.
Thanks for the reply. I think I will post a new question about which doc NOT to go to.
Thanks again

deathofurheart

I guess you could put another post up asking about doctors in your area. I'm sure that way you can at least get some feedback on who NOT to go to. I wish I could be more helpful. If you have gastroparesis due to EDS (which you probably do...) I'm sure domperidone isn't going to do anything for you just like the rest of us... You should try Zofran for you nausea/vomiting. It has helped me a LOT! I haven't tried any tubes yet. Have you had a pacer?

fedupwithEDS

I'm new, 39 and have had a diagnosis of Ehler-Danlos for 5 yrs now, but symptoms forever. My latest battle is with gastroparesis, as many of you seem to be familiar with.
I am looking for a gatro doc that is not an idiot. I have had all the tests and definatly have severe gastric empty times, diverticulosis, and had a nissan fundoplication 8 yrs ago. For the last 6 months or so, I have has severe stomach pains, bloating, n/v (even though I'm not suppose to even be able to burp after the surgery).
I am allergic to Reglan and Phenergan and the erythromysin treatment has done nothing. My doc has also been PUSHING this Domperidone, even though we can't get it through insurance and would have to pay full price from Canada. (not to mention the laundry list of side effects, I don't need).
I, too have given up on eating. Unwrapping the Nissan fundo won't help, the nerve damage is done. With EDS, my stomach tissues may tear so much, I may not have much of anything left anyway.
Anyone try the feeding tube with a jeujunostomy? With my intestinal problems I fear even that won't work.
I live in the Des Moines, Iowa area and am seeing Dr. Verma. She rolls her eyes and clicks her tongue as I start to cry with frustratiuon and pain, hoping for some help or even kindness. She is a real be-och about the whole thing. She acts like I'm making it up, and should just 'live with it'.
Can anyone suggest a better doc in my area? I have been to U of Iowa in Iowa City for other issues and wonder if I should just go there. It's just a 2-3 hr drive, one way. I have been trying for SS/disability for 3+ yrs now and gas money is hard to come by.
Well, enough whining...anyone with a doc suggestion or experience with the j-tube?

spitfire

I have been Dx with Idopathic gastroparesis over a year ago. ( I live in a little town, so I think I have been misDx for many years as reflux, gallbladder, ulcers, nervous stomach and they thought I was crazy.) I went to a bigger town and after the GI emptying test, they found it right away. I have had botox injections twice, 4 J-G feeding tubes since last July. I had a gastric pacer placed in Feb. 08. I have just now started to know alittle differnce, in order to eat alittle bit. I still get very N/V at times with abd. pain all the time, but I am praying that it will get better.

deathofurheart

Yeah, she was talking about upping my dosage. I don't see the point and like you I honestly don't feel like paying for any more medication than I have to. Liquids are also all I can really tolerate. I don't know what to do. I know there is no point in the pacer since even if by miracle it did help my stomach...it's not going to help my esophagus and intestines. Yeah...let me pump that food into my non-functioning intestines to sit and give me more infections. Thank you for your insight, I appreciate it. I'm going to see what else she wants to try and if it doesn't sound good I guess it's off to the next doctor.

TheEngine

You will be disappointed with Sanjeevi. I have been to her and she was a total waste of time. She kept pushing the Domperidone as the cure all for everything regardless of the fact that it was not covered by insurance and was considered a test drug. I moved on to Dr Bouhyder (spelled wrong) who was better as he proscribed Amitryptaline which I have since learned is actually the front line treatment for IBS which was not prescribed by her or the first specialist or the family doctor. I am extremely disgusted with the lackadaisical oh-well attitude of the doctors and the outright lame preformances so far rendered. So far the only thing I've found that works is simply to stop eating. As of now I'm on day 17 and have calmed it done alot but anything but liquid sets it off.

michdey

Sarah,

Reading your message was almost like reading my life story!! I too have Gastroparesis although I have never heard of Ehlers-Danlos syndrome. What are the symptoms? Anyway, I have had a PICC line in for IV Zofran and fluids along with pain medication--believe me anytime a doctor sees that you are taking morphine or dilaudid, you are automatically labelled an addict--no matter if you have any symptoms of it or not. I just let it roll off my shoulders. I take IV/IM morphine on a daily basis because in addition to the gastroparesis and diabetes, I have Lupus and need daily pain meds. They are trying to taper me off prednisone because it makes me susceptible to infections and in return my pain level has increased. I have had many picc lines and ports removed due to sepsis and the MRSA virus. Right now I don't have anything in--both my port and G-J tube were removed in April because they were infected by the MRSA virus. I think they are going to put the G-J tube back in soon though because I am not doing well without it. Right now I am taking my morphine IM (intramuscular)--the shots hurt but the end result is what I want. I too had my gall bladder removed not too soon before my gastroparesis got worse. I really think there is a connection there between the removal of the gallbladder and gastroparesis. I am waiting for approval for the gastric pacemaker surgery--my insurance has denied it and now I am appealing the decision. My doctor says it is the last resort for me or I will have a feeding tube in for the rest of my life and I am only 39! Well, I thought I'd jump into the conversation and say hello. Take care!


Michelle

deathofurheart

Unfortunately I don't really know of anyone that knows anything about EDS either. I've also been looking. Have you tried the EDS study at that National Institute of Health in Baltimore? That's really all I know of. I'm not really sure how much about EDS my GI doctor knows, but she does specialize in gastroparesis so she's been doing fine so far and is willing to do what she can to help me. I'm sorry I'm not much help. You could try putting up a separate post. I hope you find someone. Good luck.

kball977

Hi,
My son and I both have EDS and my son has wretched GI problems from it. He has been tube dependent since he was born and has severe dismotility in his esophagus, stomach, small and large bowels. We live in rural Montana and it took years for them to determine that his problems were related to our EDS. I am so happy to see posts from people that also deal with GI EDS problems. We are hoping that when he gets older he will be able to try a pacemaker but right now they tell us that he is too young for it. He had a Nissen when he was just 7 months old and it failed because we are so stretchy that it just stretched right open. Do you know of any good GI docs that are accustom to EDS, because everyone that we have seen barely knows what it is? We would travel anywhere for a doc that knows what we are like.

deathofurheart

Yeah, sorry about that. I left the house without putting an away message up or just signing off. *brain fart*

Well this past time they guy that started the gastric emptying study would actually flip the screen down so I could see it because he knew I had it. But then he got off so another girl was finishing the test and I couldn't see the screen for the last one. I know for the third hour it was still quite full... Oh well, I'll find out in a few days anyway. My intestinal infection is SBBO. I don't have any lovely tubing yet...I guess I'm lucky. I've kind of gotten used to the nausea. I've been eating really well, staying pretty strict to my diet...mostly liquid. As soon as I found out about the GP my former doctor didn't tell me about any dietary changes either. I looked online to see what I should and shouldn't be eating. I have a new doctor now Dr. Sanjeevi at MCV here in RVA where I live. She actually heard about me and sought me out. So she's pretty determined to do find out what all is wrong with me.

Have you tried the Prevacid Solutabs? That's what I have, and they're strawberry flavored! Hahaha. I've been on Nexium and Prevacid before...they didn't do anything at all. My reflux is better now with the solutabs, but it's still very much there. I haven't tried Methadone yet, but all the others you mentioned I've been on. I'm like my very own anti-drug because I am so resistant. It's very frustrating that nothing really helps with the pain, so I haven't been on anything lately. Anyway...I'll talk to you later. Hope you're feeling alright.

Kozush

When I had my eggbeaters sandwich GET it showed a 55% retention at 4 hours, which qualifies as "severe" gastroparesis. We think that it's gotten worse since then, and of course the small bowel issues.

Is your intestinal infection SBBO/SIBO? Do you have a G/J tube? If so, definitely take the antibiotics that way, it'll get right to the center of the problem without the delay of going through your stomach. Also the other great thing is being able to "vent" or "drain" from your G tube into a bag, which will empty out a lot of your stomach contents and help with the nausea. Bad news about doing that is that it WILL still imbalance your electrolytes and cause dehydration if you do it too much (there are people that vent 24/7 but those people tend to be on TPN or IV fluids/electrolytes which pretty much evens out the problem)

I'm really glad to hear that I helped you feel less alone :) Good luck with everything and please keep in touch. I did try to IM you with the names you gave me, but you didn't respond :( Thanks for the well wishes, too. I have a lot of hope for the Methadone, but because I'm trying to minimize what goes through my tube, I'm considering asking him if he's willing to prescribe me IV pain medication for the breakthrough, especially considering that he thinks (hopes) I won't really need it too much. I'm also going to ask my doctor if I can get my PPI (Prevacid). IV at home too. Oh well, we'll see.

Sarah

deathofurheart

Thank you for your reply. Our situations definitely sound pretty similar! I'm really not sure how bad mine is yet...I'll find out Thursday what my 18 vials of blood and radioactive egg sandwich had to show. I still have my intestinal infection. It's starting to go away. After being on the first bottle of antibiotics I lost ten pounds, so we'll see how much I drop on this next bottle. Hearing your situation really helps, thank you. Hope to talk to you soon. Take care, and I hope you start feeling better soon! ^_^

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

gimotility: RE: 2009 AGMD Digest.Motility Symp. "Hirschsprung's dis., most common cause of lower intest. obstruct. in neonates," Rodriguez MD.

gimotility: RE: 2009 AGMD Digest. Motility Symp."IBS accounts for 30% of all health related costs in gastroenterology" www.agmd-gimotility.org

gimotility: From 2009 AGMD Motility Symp.: "IBS is the most common chronic med. cond. worldwide" Pimentel, MD, http://www.agmd-gimotility.org

gimotility: AGMD Digestive Motility Symposium-Much Information & Insight. Stay Tuned For Highlights. AGMD: http://www.agmd-gimotility.org

gimotility: Hurry And Register For Extraordinary Symposium Featuring Renowned Experts In Digestive Motility. http://www.agmd-gimotility.org

Group leaders

You