Idiopathic Gastroparesis/ Ehlers-Danlos Syndrome

• By glittergurl8619
• Posted March 16, 2008 at 5:41 pm
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Hi Lori, I'm new here also. I had my gallbladder removed also for no stones or anything. just failed. hypoplastic is what they referred to it as which means underdeveloped. They thought that would relieve my GI problems but it didn't. I have had stomach problems for 5 years, it started as nausea and vomiting and I was admitted a lot back in 2003 and 2004. I was still in high school then, so easily stereotyped. They tried me on Reglan, that helped for a while but then it stopped. I am now having constipation bloating and having problems with things running through me. I havent gone to a GI doc in over 3 years because no one could help me. It seems like maybe you have similar things. I also have a possible diagnosis of ehlers danlos. some say yes some say no! so it was interesting that you mentioned that. how old are you? if its okay that i ask! I'm 22. I am trying to find a good GI motility doctor because I was told that if i wanted a name for it, we could call it that. So I have been researching nonstop for about that past week. I continue to have GI problems, but I still try to remain optimistic! How are you feeling?

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• By deathofurheart
• Posted March 16, 2008 at 5:59 pm
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Thank you for responding.

Actually I'm twenty-three. I've had pretty bad GI problems forever, but never really thought much of it until I dated a guy with IBS. After dating him I realized how bad my problems were and they've only gotten worse. If you think you might have Ehlers-Danlos you should take a look at this site...

http://www.genetests.org/servlet/access?id=8888891&testtype=both&qry=ehlers +danlos&submit=Search&showglossarylinks=yes&db=genetests&fcn=b&res=&key=8r2 XJyCHyxhqL&testtype=both&type=e&ls=c&grp=b&submit=Search

The reviews here are the best I've found. I got this site from my geneticist. You could also do a search on here for other disorders. Hopefully you'll find something that sounds about right and mention it to your doctor. I have classic and hypermobile EDS and I'm being monitored for vascular...so my problems aren't just limited to GI, but that's the main focus for now...just dealing with it. I'm still not sure what all is wrong. I just finished some antibiotics for an intestinal infection since food just doesn't want to leave my body.

So did just label your gallbladder that because it failed or was it really under developed? Mine they assumed it was the EDS since it was fine, just did basically what my stomach has done.

I was on Reglan for a while, now I'm on Domperidone...neither have really seemed to make a difference.

So what problems are you having exactly now?

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• By Kozush
• Posted March 17, 2008 at 4:19 pm
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Lori,

I also have Ehlers-Danlos Syndrome (Classical Type) that caused severe gastroparesis as well as what seems to be small bowel dysmotility/chronic intestinal pseudo-obstruction without the signs of obstruction (same thing really, but it seems that my small bowel is slow all over as far as we know) My first motility specialist thought after a while that my entire GI system from stomach down is sluggish and it certainly makes sense based on my other symptoms.

I had also had my gall bladder removed laprascopically in 2000 I believe, however I had a LOT of sludge/stones that looked like sand. It apparently filled up the entire gallbladder from what they told me. So clearly there was something wrong, but it didn't explain all the symptoms. When I was diagnosed with an old style gastric emptying test (I was asked if I wanted scrambled eggs or oatmeal, I picked oatmeal) I was told I have "delayed gastric emptying", given Reglan and that was it. Was never explained about any dietary changes

I had the pacer surgery (after a very short approval issue, talk to someone at Medtronics who spends all day calling insurance companies to get things approved, she's VERY good) on July 18, 2007. So far, absolutely no change in me. In September I got a PICC line for home hydration and IV Zofran. Eventually started getting IV pain medication as well. With that combination I was doing quite well, except for the fact that I increasingly grew unable to tolerate my J tube feedings. Right after the tube was placed, I developed small bowel (intestinal) bacterial overgrowth. Thankfully it cleared up pretty easily. I still kept having problems with bloating/distention but I never had that kind of diarrhea/bowel movments again so despite the fact that I was TREATED for SBBO, the treatments never reduced the distention. By November I stopped it all together, because I could only get even as little as 30 ml before getting nauseated, more pain and of course, bloated.

No one has done even a small bowel follow through on me, much to my confusion because it would a very simple test to confirm motility problems there, before going to get the nasty tests done that are only done in a few centers across the US. I am going to see a Dr. Chey at the University of Michigan's motility clinic. He's an intestinal specialist who also has had patients with Ehlers-Danlos.

In February, after having surgery to remove a grapefruit sized mass on my ovary and with my fallopian tube, I was accused of having a narcotic addiction (when asked what made that doctor think that, what evidence she had, she never really gave any...) and they ended up pulling out my PICC, not really giving a reason that was understood. 10 days after the PICC was pulled, I was back in the hospital with dehydration, nausea/vomiting and severe pain. BIG surprise *rolling eyes*. I saw a new PCP that my parents wanted me to see, and sure enougrh, she thinks I should get my PICC back and restart the IV fluids and Zofran, so I have an appointment on Wednesday to insert a new PICC. I'm very excited about this because I want to feel better SO much. I also started seeing a pain specialist and after a few busts at medication trials, he started me on Methadone tablets. Methadone has a long half life, but it's not like the OxyContin where it's an immediate release medication held together by special glue to make it release slower. He told me he's had a lot of patients do REALLY well on it, even after being on many hundreds of mg of morphine or oxycodone and it won't have the ups and downs of IV Dilaudid. The Fentanyl (Duragesic) patch failed miserably with me, it was like having absolutely nothing on. For some it does really well, for me no such luck. I've heard a few people mention this too, so I know it's not just me being ANOTHER freak of nature (as EDS I jokingly say makes me).

Anyway at this point, despite the fact that my intestine seems to absorb just fine, it the stuff that doesn't get absorbed that causes problems, and of course that the pump moves a lot faster than my small bowel does (even 30 ml/hr way too fast, heck when I am pushing medication through the tube, you can literally watch my belly bloat as I'm doing it). So although my blood work (except for electrolytes) generally looks not too bad, I've not been getting enough nutrition as evidenced by my weight loss. At this point it seems TPN is the next option, but everyone is scared to death to put me on it. I'm hoping that being on TPN for a little while will give my system enough of a rest that in a few months or a year, I might be able to start tolerating the J tube feeds again...who knows? I've heard of it happening to other people! Well everything rests on Michigan right now.

If you ever want to talk one on one, feel free to message me here and we can exchange e-mail addresses and/or instant message names (I have Yahoo! and AIM)

Good luck, I hope that I was helpful

Sarah

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• By deathofurheart
• Posted March 17, 2008 at 4:41 pm
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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! ^_^

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• By Kozush
• Posted March 18, 2008 at 5:13 am
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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

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• By deathofurheart
• Posted March 18, 2008 at 1:27 pm
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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.

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• By kball977
• Posted May 29, 2008 at 4:12 am
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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.

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• By deathofurheart
• Posted May 29, 2008 at 9:11 am
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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.

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• By michdey
• Posted May 30, 2008 at 7:46 am
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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

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• By TheEngine
• Posted June 13, 2008 at 5:23 pm
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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.

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• By deathofurheart
• Posted June 13, 2008 at 6:30 pm
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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.

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• By spitfire
• Posted August 28, 2008 at 3:10 pm
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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.

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• By fedupwithEDS
• Posted January 18, 2009 at 6:17 pm
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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?

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• By deathofurheart
• Posted January 18, 2009 at 9:47 pm
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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?

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• By fedupwithEDS
• Posted January 18, 2009 at 11:02 pm
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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

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• By Einstein
• Posted July 5, 2009 at 12:45 pm
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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

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• By deathofurheart
• Posted July 5, 2009 at 7:05 pm
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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

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• By debbie2027
• Posted October 27, 2009 at 5:36 pm
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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

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• By deathofurheart
• Posted October 27, 2009 at 8:20 pm
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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. ^_^

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• By debbie2027
• Posted October 28, 2009 at 9:42 am
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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.

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