"Suffering the Slings and Arrows of Outrageous Fortune"

GI Questions

If you have questions about the GI issues EDSers face, feel free to post a question in the comments of this page.

Gastroparesis, poor motility, food intolerances, and more fall in this category.

Comments on: "GI Questions" (16)

  1. Michelle said:

    Hi there,

    I do have a motility issue, so I am told and dizzyness numbness, brain fog, and a very eery creepy feeling always going up the back of my neck.

    It is very scary, and all the Dr.s can say is you have a motility issue, that has left me terrified.

    the quality of my life has gone down hill dramatically, and I have pain almost every day.

    I only just stumbled upon this site and am always searching for what may be the cause of this horrible condition I have been left with.

    Please if you have any answers, email me at the address I have left.

    thank you so very much

    • Hi Michelle,
      I am so sorry that you are having such troubles and I wish I had good answers for you. It is so scary to live with motility problems and even scarier when the doctors are clueless.

      So, while I don’t necessarily have any answers for you, I will just throw out some things that you can think about, just in case you haven’t already. I know that motility issues can be the result of a number of different conditions – diabetes, mitochondrial disease, and EDS are a few. Have you been diagnosed with any of those?

      If not, you might want to look at the diagnostic criteria for EDS to see if that could be an underlying condition. Also, I have been looking at mitochondrial disease in regards to my daughter and I was surprised that one of the main symptoms is gastroparesis/poor motility. Apparently, there are some doctors who suspect a connection between EDS and mitochondrial disease, both of which can result in gastroparesis, so you may want to bring both up to your doctors.

      The only other thing I could recommend for you, is to see a GI motility specialist, if you aren’t already. You would be better served by being seen by a motility specialist, rather than a regular GI doctor, who may not know enough about the special issues you face.

      I hope you find some answers soon – I will be praying for you. I am sorry I can’t be more help, but I urge you to keep pushing to find answers for yourself.

      Beth

      • Michelle said:

        What if any are the suggestions for pain management?

        Does anyone one have any suggestions?

        This has been a long hard road for me mostly, but my family. We are all suffering so very badly. I feel like I cannot climb this mountain anymore, unless i get some type of pain control.

        Thank you to anyone who reads this, and can offer some help.
        God Bless you

        • I am not sure exactly what type of pain you are experiencing, so I will just throw a number of things out there that could be helpful…

          For EDS pain (joint, nerve, muscle, etc) a multi modal approach is best – medications like neurontin can be helpful, as can muscle relaxants taken with care. Opiods can be safer than nsaids or tylenol and are more effective for more than mild pain. A compounded ointment containing most of the above plus a few other meds can be helpful and have less side effects. Beyond pharmaceutical methods, ice and heat can be helpful, as can a TENS unit. Bracing and physical therapy are often very helpful and even necessary to stablize joints. Some people benefit from nerve blocks but one needs to ensure that the doctor is knowledgeable enough. EDSers should be very cautious of cortisone shots as it weakens the collagen. The best thing for managing significant, chronic pain is a good pain doctor, but they are not so easy to find. Many focus on nerve blocks and the like, which may not be as helpful as a careful regimen of medication. Treating pain when it gets bad is not nearly effective as having a daily regimen that prevents the pain from getting out of hand.

          For the pain that goes along with poor motility/ gastroparesis… I have no good answers. My daughter has near constant pain and nausea from it. Right now we are starting the process of diagnostic testing by a motility expert and hopefully he is going to help us manage her condition. What we have found to be helpful is:
          1) Daily Miralax to keep things moving
          2) Knowing what triggers symptoms and avoiding them (easier said than done!)
          3) Grazing through the day and avoiding large meals
          4) Warm foods can be better than cold food
          5) Liquids are sometimes easier to tolerate than solid foods; fats are harder to tolerate
          6) Tight clothing can aggravate abdominal pain; loose, comfy clothing is best
          7) Staying well hydrated
          8) Peppermint oil capsules can help calm the digestive tract down. This was recommended by one of our GI docs and it does seem to help. He recommended a brand called Complete Relief, but we have another brand that seems to work as well. Up to 3 tablets a day – taken with meals.
          9) Avoiding narcotics as they can hinder motility (difficult when you need them for pain management!)

          If you don’t have doctors who are listening or that you feel confident with, I would encourage you to keep pushing to find someone who is better. I know that can be very difficult, but you are worth the effort. There are treatments that can help but you need a doctor who has a clue. I would also encourage you to join a forum that you can get support and information. Inspire has both an excellent EDS forum and a motility forum Both of these forums could provide suggestions for better doctors in your area, as well as treatments to investigate.

          Hopefully, this answered your question, but if not, let me know and I will try again!

          • Michelle Troschuk said:

            please keep me informed with the motility pain issue part. This is where I have trouble, and constantburning pain, that literally takes you out of your skin. I am on a anti depressant to help with sleep and the mood, but I am not sure if it is the one. this is a very frustrating time. I also go for cranial sacral treatments, because my nerves in my face along the jaw are very tight and cause the numbness I experience at times. also for my arm and fingers. I will try the pepermint oil again, how many drops doe your daughter use? I am not truly sure if this is what I have, but I do have the motility issue, and your daughter and I need to keep in tough, and let each other know how we are doing. Thank you ever so much for your kindness, and if you want you csn give me your email address to keep in touch, I would like that so much. Michelle

            Date: Tue, 5 Feb 2013 04:17:28 +0000 To: mtroschuk@hotmail.com

            • The peppermint oil is in gel capsules. So, she can basically take one with each meal – up to 3 times a day. It is an anti-spasmodic so it seems to just calm everything down. I won’t say it is a miracle cure or anything, but I think it helps a bit and anything that helps even a little is something. I sympathize with the pain you are having – my daughter is miserable with it every day. If I find anything that could be helpful, I will be sure to share. This is a tough condition to live with and find help for. My email is bethsmith92@live.com.

          • Hello, I am new to the forum but recently diagnosed with EDS and my dd has GI issues also. We have pondered Gastroparesis for my dd along with motility issues, but when gastric delay study was done, she emptied her stomach within the time frame they looked at. So, that was eliminated but still thinking motility and she also has fructose malabsorption issues and bacterial overgrowth issues in her small bowel where it shouldn’t be in larger numbers. Anyways, a really good site for anything to do with Gastroparesis is by Crystal Saltrelli. She has GP herself and has a ton of useful info. Her website/ blog is called Living Well with Gastroparesis. She is also familiar with the FODMAP diet which is helpful for many with GI issues and this is an elimination diet that focuses on limmiting the highly fermentable carbohydrates that cause bloating, gas pains, diarrhea, can add to constipation and etc. Kate Scarlata, RD is one of the dieticians in the US, along with Patsy Catsos, RD who are training other dieticians across the country on the diet that is helping many with GI issues that range from IBS, IBD, Celiac Disease, Gastroparesis, motility and etc. It’s not a cure by any means, but helps people figure out their trigger foods and know what ingredients to avoid to feel better.

  2. 86Marie said:

    We are 4 years into finding help with our daughter’s severe painful abdominal condition. She jumped off a swingset, came home two houses with a serious nosebleed but the next day started severe head and abdominal pain. Two years of seeing too many doctors and teams at Children’s, NO one knew what was wrong with her!

    I took her to my PT for myofascial work waiting for our apt at the Cleveland Clinic or Columbus Children’s hospital….the PT asked who was treating her EDS? We did not know what that was.

    Back to our pedicatrician, to genetics at Children’s where they AGREED! Three days prior a well known Neurologist ready to retire told me it was NOT EDS or Abdominal Migraine but now they say IT IS? He said it was Munchausen’s but gave NO ideas for treatment.

    We have been to the GI team 3 times for months each, to 3 other GI doctors, to Neuro, to the Headache clinic until someone said Abdominal Migraines do not exist and kicked us out, to Psych 5 times for evals, to the Pain clinic 3 rounds, the first he tried to say she attempted suicide by taking her own supplements and where did she learn that type of desperate behavior… so our 11 yr old has been through a lot. We paid to put her through their pain clinic boot camp last year, two weeks inpatient intense training with PT, OT, psych, doing her school work, teaching coping skills…and finally she was STABLE! after being home a few weeks. Until a few months later, some virus..

    last October she came down with severe sore throat, abdominal pain radiating around her belly button, weakness, dizzy, pale, nausea, not wanting to eat or drink due to the pain, so they tested her for mono…negative. She had severe headaches too. The third visit back to the pediatrician, they gave her Tylenol #3,the first real pain killer! For two days she was great! But now we are told to not give this. The pain syndrome so bad, they said to go back to the Pain Team at Children’s. I called of course, several times but the apt was not until JANUARY! We struggled so hard, taking her to ER at times but the Toradol plus Reglan only lasted less than a day. I begged to have them try something else.

    Back when the headache clinic allowed her there, they were seriously discussing admission for a trial of DEA? a migraine treatment IV and then have her on something. In the early days they tried Elavil which helped a lot it seemed until they increased her dose. She was asymptomatic except occational nose bleeds but the NP insisted that was part of this. from 10mg she was to slowly go to 30mg but then we lost our child. She had break downs like we never saw before. We begged to lower the dose, but the pain came back, and we had to change departments, we were scolded for wanting to change meds. Once we tapered her off, our kind gentle girl was back, but now in severe pain spells. She gets too groggy on Depakote, weirded out on Prozac, none of the GI meds have helped.

    they use words like functional bowel, on GI said she had to just go to school, that he has kids with bleeding bowels that do not stay home from school. My child WANTS to be in school! We’ve taken her to 3 bio feedback professionals and that is how they want her to cope. For now they have her only on Cymbalta 20mg and Clonidine 0.2mg to help her sleep, but it has not worked yet and its been 6 weeks. She says it makes her nauseated and hung over. She is coming to me several times during the night trying so hard to cope. I make her warm decaf herbal tea, talk her through guided imagery, run her a bath, do some massage, but I’m now critically ill from pushing so hard. We have no real support for we chose to adopt and that upset my parents and siblings. I suddenly became the scapegoat and bullied by my own family. We cut ties only for my sisters to file false charges that nearly took our children and put us in prison. STRESS? Over the top. Things you would never expect.

    I know stress is a big part for her too so we as a family have always worked with a team of therapists. No one prepares you to realize your own parents would do things like they have done to us, to realize you are not respected, supported or loved. They went to our friends to create toxic situations that pushed our friends away after this long. But the pain of their words and now we are so hurt losing and losing people as if its one funeral after another in our daughter’s mind.

    we were told we could NOT have a refresher in the hospital program. I asked for three days, now she is IN pain. They said I had to take her to Cleveland for three weeks. I clearly said we could not. We have two younger children who are in need of mommy, and Dad has to work…we have no one to take care of them. I’m too frail to even go but that did not seem to matter. I was fighting back tears and the Dr shook our hand and left the room.

    Why do they not prescribe pain control for EDS and Abdominal Migraine? They said we could take her to ER any time, but that does NOT work!

    I do my best to encourage her! To make her life colorful and find joy in the moment. To distract her with laughter but listen to her soul. To hold her hand as she breathes through the shards of glass churning in her belly day and night. I hold my younger two, reading with them or just snuggling in hopes that even if I’m now too weak to talk, they know they are loved and forever will be!

    I had a heart attack from the EKG, an endocrine disorder that can be fatal at several points. I have to keep my blood pressure from spiking but I have been doing my own prayer, meditation, seeking help…only these spells they think are from adrenal tumors or pheochromocytoma…I am so scared not being able to function, grieving privately years of the abuse I’ve struggled to stop, not able to find solid supportive friends with so many who only want to blame. No one does this on purpose. They are hurt people reacting from their own wounds. No one wants to adopt a family like us and risk the wrath of the people who still lash out through a third party. I cannot control them, only me. But this nightmare cannot last…I just want to live long enough to help my children!

    • Goodness, you have been through SO much – I don’t even know where to start. I probably won’t be much help but I do care and will do what I can…

      First, have you been to Cincinnati Children’s Hospital? You don’t say so but when you mention the pain boot camp, I wonder because there is an EDS pain program that sort of sounds like what you are describing but perhaps not? If you haven’t been to Cincinnati Children’s, that is where you need to go. (And I really hope you haven’t been, because if they are the ones treating you so badly, I have no advice for you!) There is a Connective Tissue Clinic there that specifically treats EDS. They have PTs and OTs who are experienced with EDS and can refer you to other needed specialists. The pain clinic is also familiar with EDS. The neurology dept – we have not had great experiences with, but your situation may be different than ours. GI – they have folks who definitely know EDS, although the awesome motility specialist who was great with EDS has left and I don’t know who will replace him.

      Basically, Cincinnati Children’s is where you need to be. Other doctors have no idea and throw out ideas like Munchausen’s when they have no other ideas. Idiots. It is criminal, honestly. Obviously, abdominal migraines DO exist. And that GI has no clue what kind of pain your daughter is experiencing. I am so sorry you have been treated so poorly, especially when you are ill yourself. Is it possible that you also have EDS? If so, the geneticists at Cincinnati Children’s will treat you also. obviously, you may very well not have EDS but there is help available if you do.

      Our doctor is Dr. Derek Neilson. His contact info is:
      Derek E. Neilson, MD
      513-636-4760
      derek.neilson@cchmc.org

      The other doctor in the clinic is also very good from all I have heard:
      Elizabeth K. Schorry, MD
      513-636-0121
      elizabeth.schorry@cchmc.org

      If you have not seen either of these doctors, I urge you to do so. There is a waiting list, so call asap if you want to see them. There is also Dr. Tinkle in Chicago, if that is closer for you. He is an internationally recognized EDS expert – he is the one who diagnosed my daughter before moving to Chicago. His contact info is:
      1875 Dempster St
      Suite 310
      Park Ridge, IL 60068
      847.723.7705

      I wish I could be of more help. I know how incredibly frustrating it is and you have my deepest sympathy. I do believe that if you can get to Cincinnati Children’s, you have some hope of finding good treatment and pain relief. Honestly, other childrens hospitals are good, even great, but NOT when it comes to EDS. Cincinnati is one of the few places where there is actual knowledge and help.

      There is also a facebook page called Fractured Families and it is families who have EDS who have been torn apart by abuse charges. You are not alone! Here is the page: https://www.facebook.com/fracturedfamilies?ref=br_tf Try contacting them and see if they can help you out – I think they could at least offer support because they have been through similar experiences.

      Please let me know how it goes and if I can help in any other way! I will be praying for you and your family.
      Beth

  3. Hi,

    I have a question about the health issues I have and if they can fit in EDS. I’m 44 years old, female and have health issues from my sixteen. A diagnosis of slow transit constipation and delayed gastric emptying( a lot of troubles, I’m not able to eat normal food, just a few things in little portions throughout the day), also chronic fatigue syndrome and POTS(I take fludrocortisone), a little mitral valve regurgitation(without symptoms), a lot of headache(migraine and tension headache), cold and heat intolerance and recent Crohn’s disease. I have hyperextensible joints but not in a degree that I have luxations/subluxations or that I’m in a lot of pain. I am experiencing some stiffness, a little pain and muscle fatigue. It was my physical therapist who said me that I’m really very flexible. But I don’t have to take pain-killers or NSAI’s. The extra-articular problems are a lot greater. Is there a possibility that this health issues are however related to EDS? It’s is important for me because my daughter of eighteen also starts to have symptoms of CFS, POTS and nausea and constipation, she also has hypothyroidism(Hashimoto’s).
    I’m sorry for my bad English and thanks in advance!

    Elke

    • So, SO sorry it took me so long to respond to your excellent question (and excellent English, by the way!). My sincere apologies for not getting to you sooner!

      Sadly, I have to say that I think the symptoms you described do sound like EDS. For many people, the joint issues (dislocations/subluxations/injuries) are the least of their problems. The GI, autonomic, and fatigue are often the most debilitating of EDS symptoms. My thought is, if your PT is telling you you are very flexible and you have some stiffness, pain and fatigue, it is enough to be noticeable and you would probably score high enough on the Beighton scale to get a diagnosis.

      I would recommend that you try to get to a good geneticist who is an expert on EDS, for your sake and your daughter’s! EDS is not curable but there are many treatments for the symptoms and problems that come with it. The sooner you get help/treatment, the better the future will look for you both!

      Good luck – if I can help, please let me know!

  4. Thanks a lot for your answer!

  5. Hi there, I was recently diagnosed with EDS. I suffer from all of it, but what I wanted to talk about was the Gastro problems, especially this problem which occurs sometimes only for a few hours until I can get to sleep.

    Its like an episode, where I start by feeling stressed, followed by REALLY nauseous (don’t allow myself to vomit as I have antiemetics and terrified of vomiting), then get diahorria, have uncontrollable yarning, blurred vision and then have a few hours spout of what I would call ‘mania’, feeling completely out of control and unable to speak, sit still, eat or do anything until I get to sleep (even if it’s an hour sleep that I can get). And when I wake up I look pale and feel terrible. I’ve had this for about 6 years and it was more consistent when I ate gluten but even now when I do not go near gluten I still get it from time to time. What is it???? My friend said it might be a stomach migraine, has anyone heard of this with EDS? Thanks for your help, it scares the hell out of me!! Jax

    • Hi,
      Sorry it took me so long to reply to you. Your episodes sound scary and I wish I had more information to answer you with. It could be an abdominal migraine but I would suggest you maybe look into Mast Cell Activation Disorder. I wonder if you are having essentially allergic reactions? Or maybe it is a type of seizure?

      I am wracking my brain of other suggestion for you and I am just coming up empty. I will I could be of more help. 😦 If I think of anything else, I will reply again.

      Good luck – I hope it all settles down for you or you figure it out.
      Beth

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