Conversations With Our Community: Gastrointestinal Issues (GI) in Ehlers-Danlos Syndrome (EDS)
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- Опубліковано 7 вер 2024
- ** TW: Discussion of Medical Trauma / Mental Illness / gastrointestinal functioning and complications **
President for The Ehlers-Danlos Society, Lara Bloom, speaks with Ellie in the United Kingdom, Savannah, Serenity, and Rachel of the USA, about living with gastrointestinal issues and Ehlers-Danlos syndromes, and the impact on quality of life and mental health.
Upper and lower gastrointestinal tract complications are common in EDS such as swallow difficulties, sluggish stomach, and large bowel, causing nausea, vomiting, acid reflux, bloating, pain, and absorption, and food intolerance concerns. Also seen in EDS are hernias, out-of-place organs, and prolapse, as well as functional problems such as changes in the speed of the digestive system (gut motility).
For some, gastrointestinal issues can be improved with treatment, specific diets or excluding trigger foods, and nutrition. For some, gastrointestinal issues can be severe and very difficult to treat. This discussion features lived experiences of severe gastrointestinal complications in EDS.
Resources:
Gastrointestinal involvement in EDS: bit.ly/3tYusfN
Conference videos and webinars: bit.ly/3f0d4TJ
For questions on gastrointestinal concerns: ehlers-danlos.com/eds-helpline
As Ellies mum I have seen first hand the student doctors who show an interest and a proactive nature when they speak to you. They then go off to speak to their senior consultants and return silenced. The key to this which I have said for many many years I believe is to re-educate those professionals who are already practising and who will be for the next 20-30 years. That’s where the problem is. I have had paediatric consultants laugh in my face the moment I mention hEDS. A few days later a safeguarding attempt was made for a third FII allegation.
Medical professionals......start to interact and speak to people like these amazing ladies and you will learn so much. Your hipocratic oath to “do no harm” is currently not being honoured.
Thank you to all of you for telling your stories and to my daughter Ellie, you amaze me everyday with your strength 💕
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
Doctors get continuing medical education for their entire careers. The problem is that there are just so many things that can be learned, and not one person can retain the entirety of all medical knowledge. But yes, I totally agree that they need to be taught refresher courses on things like this, because it’s a huge deal for people who live through these conditions.
Amen! I'm so sorry to hear what you've been through. Ellie is amazing, and it sounds like you are, too!! I would say to the doctors... you swore an oath to do no harm. The practice of medicine is not a trivia contest. Your duty is to HELP the patient in front of you - not to toss out some guess as to what you think might be going on, with no regard for the consequences. You are supposed to HELP the human being who came to you.
Thanks Ellie’s Mum. Thanks for persevering for Your Amazing Daughter. Thanks for supporting Her bravery and courage to share her experience and much much love to both of you.
Very relatable stories. Thank you for sharing. If I could say something to doctors I would like to say please be humble enough to admit if you aren’t familiar with an illness like EDS and be open enough to let your patient educate you on their experience
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
My heart goes out to all of you for the struggles you’ve been through. Hearing your stories brings to mind all of the issues my mother had that were completely misunderstood and misdiagnosed, as well as my own issues for as long as I can remember. Being recently diagnosed with hEDS and MCAS, I can see that my three daughters are also affected as well as my three grandchildren. In fact, there are many people in my family that are affected and now I’m faced with trying to explain to them what is really going on with all of the unusual symptoms, while they assume I am a hypochondriac. I am learning more and more about what the truth is, and I find these videos are really helpful. Thank you!
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
Same
Wow you just watch something you feel like you are finally not alone in the world? I am weeping on my lunch break. I’ve been bullied my whole life by doctors, teachers, family, everyone at this point saying my symptoms aren’t there, I’m feeling what I’m feeling cause I’m anorexic with migraines… a few years later after that trauma I was given my diagnose of EDS with hypermobility; POTS, lymphedema, Gastraparesis, and still going on with more tests next week with a EDS specialist I finally was able to get into in Oregon. I finally after two decades have a team that wants to help me and believes me. I can’t say enough good things about the doctors I am with now. Do not give up!!! You are not alone!! Thank you for this video to help other people suffering know they aren’t alone ❤️
We have Let's Chat groups on Zoom if you ever wish to drop in and say hi, we're here. ehlers-danlos.com/virtual-support
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
Bre, my daighter has hEDS and lives near Portland, OR. What specialist are you seeing?
@@chrisgowins7760 Hi Chris,
I’m sure you’ve had issues finding providers like most people, and I hope you don’t lose hope for your daughter. All of my providers are currently at OHSU, mainly in their pain clinic. I see Diane Behall for acupuncture, Jennifer Hessick for massage, Margaret McReynolds in Physical therapy, and my most recent provider is a EDS specialist naturopath at Ohsu - Dr. Alena Guggenheim. I was originally told she has a five year waiting list and they would not add me to the list, but after going to so many of appointments with other providers I was able to get a internal referral from my other providers to see Dr. Guggenheim. She is the one who is has ordered all the tests and helping me understand what kind of EDS I have. I hope this helps somewhat. I went a long time in Oregon with no providers who would help (Providence) and it wasn’t until I kept switching doctors to finally find the right path for me.
This has been so informative for me as my daughter is going through similar problems now and has only just been diagnosed with EDS. You all have been so brave not only I’n what you have been through but in talking to us and informing us so well of the problems you have to deal with. I still live in hope of getting some correct treatment and recognition for my daughter and now her son also looks as though he probably has EDS too. Thank you all
As someone with EDS and GI issues that disrupt my every day life in significant ways but isn’t on a tube feed yet, I feel like this panel gives a skewed view of what living with GI issues and EDS can look like.
I wish there had been more EDSers on this panel who deal with a variety of GI issues. It was great hearing from Serenity, Savannah, Ellie, and Rachel...but they all have roughly the same GI issues and are all at the severe end for their conditions. Gastroparesis, motility issues, tube feeds, and rare complications.
Seeing only the most severe and the most rare conditions isn’t really helpful for the community at large. It’s always good to hear those voices as well, don’t get me wrong, they are part of the community and deserve a voice as well.
But hearing from a variety of experiences provides a better view of the actual community.
It would have been helpful to also include patients with IBS, GERD, less severe gastroparesis, people who deal with chronic GI issues without a known cause yet, and other GI issues often seen in EDS.
Thank you panel of wonderful warrior women! thank you for being brave & sharing your stories.
I have many chronic-illnesses, over 11. The worst being the EDS and it’s co-conditions.
I suffer with severe Gastroparesis and have a peg-j tube I’m on feeds, fluids & meds down my tube NPO and struggling at the moment. I was born prematurely with pyloric issues as a baby, as well as a whole host of other issues through my life.
I have part paralysed Bowel (have to use Navina Smart), bladder (have SPC catheter), stomach (peg-j tube fed 24 hrs feed & fluids), pancreas & Gallbladder (PERT enzymes over 24 hours also down my jej tube), POTS also, my joints are awful many daily subluxations, and dislocate at times too.
I also am being treated for severe SIBO from the awful lack of motility, waiting for my 41st surgery in 3 weeks in the last 10 years.
It’s a daily and hourly struggle I only go out to hospital appointments rest of time I’m too poorly to go anywhere so I feel so much solidarity and understanding for the wonderful panel of ladies, blessings to you all 🦓🦓💚
Thank you for doing this!! To all the young ladies thank you for sharing your stories. You are all brave and beautiful and your stories will bless others and prayerfully help the medical community to have empathy and as one young lady said "think outside the box" when listening. My heart breaks that you weren't believed by doctors! I have a family member who has been diagnosed and I came here to gain a different perspective. My prayers are with you all and your families on this journey.
Thank you all for sharing your EDS-GI journey.
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
Thankyou for sharing the trials and struggles you all experienced.
It took an enormous amount of strength to endure the disbelief and labelling as a psychological cause.
The amount of people who have suffered from mental anguish from disbelief of physical symptoms caused by EDS is staggering and extremely disturbing and alarming. One Young man had attempted suicide twice before a neurologist ready for next next patient noticed he cracked his joints. The neurologist says “I have to see my next patient but look up Ehlers Danlos” !
That was his breakthrough! Cracked his joints because the neurologist had just told him there is nothing wrong and bamm! The golden clue. His life is definitely improved because He was diagnosed. He was pushing himself to walk because he’d been told it was in his head and he was lazy.
Strength to everyone suffering this syndrome and the syndrome of disbelieving practitioners.
My heart goes out too all these ladies, especially Ellie - that’s an indescribably hard situation. ❤ my best friend had a very similar experience, except her onset was around age 12, which I know is a big difference. Love to you, and I’m praying to Jesus for you.
These stories break my heart, and the inhumane treatment should not be ignored. I am sad and angry for these young people, and I tell everyone who will listen. They deserve better. My daughter deserves better.
i love our community. 💜
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
Thank you all for this!
Rachel, my test also showed a fast transit but one dr told me it would have to be rare and he didn’t believe that it was the case. I bet you guessed , I’m going to a new GI hopefully soon and would love to let you know if he is able to give more information on ways to help. I know we are all different but you could relay to your doctors and see what they think.
Keep fighting ladies! 🥰
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
I would love to know if you got any better info Ashley. Thanks!
I’m waiting to hear back about getting my case seen by the new doctor! I’ll keep you updated!
Not being believed/heard is by far the worst part of EDS ❤️🩹
My entire kidney was stuffed completely full of stones, and I am becoming convinced that it is related to EDS (for which I do not have a diagnosis). I presented with gastric problems rather than the usual symptoms. Thankfully, the ER doctor ordered a CT scan, and the stones showed up. My whole kidney showed up white on it. Though I do tend to have gastric issues, I’m grateful that mine are not as severe as those talked about on this video. I understand the pain, though, for sure. I have a family member with Crohn’s as well.
Thank you for doing this ❣️
Thank you for sharing all of your experiences. It's so strange how the symptoms start at similar ages with others I've met. I was born with the signs but they put me on risk assessment for the first 24 hours, bought me back in at 7 days old & chose not to tell my parents why, 8 months old I had NEC & had to have an appendicectomy, 3 years old GI issues started but it was put down to common viruses, 4 in hospital with all the signs of EDS but it was put down as viral arthritis suspected. My symptoms were all there all the way through in different ways. How do you deal with that anger? A endoscopist suspects gastroparesis from the findings in my stomach but the gastroenterologist has ignored his findings, because my type 1 diabetes is well controlled, it's not the cause, therefore it cannot be. 🙃 They really aren't acknowledging my hEDS. It's in my notes as I have stage 4 mental illness creating physical symptoms 😞 the incorrect professionals create my mental illness, but my mental illness does not create my pain or other symptoms. I've never been able to eat a lot without looking heavily pregnant, even as a baby. But I don't have sickness anymore, that stopped at 22. I have constipation, cramps & bowel incontinence. I also have so much high protein in my urine that everytime they test it I get given antibiotics. & Boarderline okay low liver function.. I don't know what that means🙃 how do I get my scan results from dr's? I got my medical records but my results from scans wasn't there.
Please do call or email our helpline team who can listen and support: ehlers-danlos.com/eds-helpline
Keep fighting the system to get the help you need I fought the ‘system’ for over 12 years until I was finally taken seriously good luck 🤞🏼
Ellie I feel for you so much. My ex husband left me and told the police I was a drug addicted and had anorexia and bi polar and was going to kill myself and my four children. He had NO EVIDENCE OF THIS . Police took me forcefully to a psychiatric hospital ward .. took me three weeks to prove I was sick and not mentally ill.
So incredibly sorry to hear this.
@@TheEhlersDanlosSociety I tried to go to the media . No one cared except for the people in the Ehlers Danlos Society group in Cairns and I met Carla Berry and Sherri Hickey and my knowledge of my own disease is huge . Living in a rural area with only one public hospital and that hospital has been so cruel to me and my other EHLERS family. Those that can have moved away for better health care in the cities. I’m stuck here for now with my ex and our now 6yr old son. Whom I eventually got unsupervised visits after three years in court proving I was sick and capable of raising him, even though I had three teenagers that I had raised already by myself. I don’t think i will ever trust a man again after what he did to my family. Thanks for your uploads ! I save them and send them to my GP!!
I’m so sorry He failed You. ❤
I feel so badly for the girl with CPTSD. I was also raised by my grandmother. And i was never believed by anyone,especially my mother, amd Drs. Being in pain since 2 years old and having to deal with not being believed until i was 58 years old has been so hard. My (ex) husband of 30 years even thought i was faking . It actually took me self - diagnosing and then getting my Dr. to agree to send me for testing. Even now ,she doesnt understand the disease, and really believes that it causes very little pain, if any. She was never taughr about it in school, so she had never heard about it before i came along. I also have CRPS, and she had never heard of that, either. What DO they teach drs these days, if nothing about diseases? No wonder some of us have PTSD & CPTSD on top of everything else.
Anyone on the panel with dysautonomia? It can affect blood sugar and GI issues as they are CNS driven.
Hi there, yes some of the panellists also have dysautonomias.
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
Oh MY GOSH...I'm 69, just diagnosed with EDS and Mast Cell...have had motility issues for a LONG time....2 bowel resections, its no way to live, but...what other choice do I/we have? Every single joint is messed up, torn rotators, biceps, need both knees replaced...and my spine...just had spinal fusion gone wrong.. Always having gastroparesis, don't absorb well, my hair is breaking, falling out..but I'm "fat" .supposedly is from my having Hashi-motos/hypo thyroid. 3 yrs ago my hair was down to my waist, thick and beautiful...NOW its broken, shoulder length, fuzzy, frizzy and missing half my hair. It makes me cry. I had horrible stomach aches as teenager, was told was all in my head, emotional issues as my mom took off to do her own thing, my sperm donor was an abusive monster, my younger sisters lived with others...so I was alone all the time.
Would've loved to be part of this..
Thanks so much for wanting to be a part of this series! You can submit your details here: www.ehlers-danlos.com/community-voices-video-application/
Likewise would have loved to have told my story I have many chronic-illnesses, over 11. The worst being the EDS and it’s co-conditions.
I suffer with severe Gastroparesis and have a peg-j tube I’m on feeds, fluids & meds down my tube NPO and struggling at the moment. I was born prematurely with pyloric issues as a baby, as well as a whole host of other issues through my life.
I have part paralysed Bowel (have to use Navina Smart), bladder (have SPC catheter), stomach (peg-j tube fed 24 hrs feed & fluids), pancreas & Gallbladder (PERT enzymes over 24 hours also down my jej tube), POTS also, my joints are awful many daily subluxations, and dislocate at times too.
I also am being treated for severe SIBO from the awful lack of motility, waiting for my 41st surgery in 3 weeks in the last 10 years.
It’s a daily and hourly struggle I only go out to hospital appointments rest of time I’m too poorly to go anywhere so I feel so much solidarity and understanding for the wonderful panel of ladies, blessings to you all 🦓🦓💚
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
My daughter has just been diagnosed with heds….to say this is disheartening is putting it lightly.
Recently had a friend fly up and visit me and he just couldn’t understand why I can’t just eat and go to the toilet like a “normal “ person. Recently I had costrochronditis and couldn’t even take a deep breath. The weight dropped off me so quickly and now I’m so thin and fatigued. I avoid gluten, dairy , alcohol and processed foods. I’m getting weekly iv treatments and they have helped but it’s expensive at $120 per session. Diagnosed first with endometriosis and then the Drs thought that it was all hormone related but at 16 I was diagnosed with Ehlers Danlos Syndrome.. in my 40’s I was diagnosed with MTHFR Gene and mast cell activation.
Some People don’t seem to try very much to understand, they just form opinions usually without even asking.
Hello Savanna. I am just wondering if you have alopecia. I have hEDS and GI problems. I am asking because my daughter has alopecia.
I was only diagnosed a year ago and I am from Akron Ohio. I go to Cleveland clinic to see most of the doctors. I just heard of a program that is called “medical home” for EDS patients.
I have qualified but I didn’t know if you have heard of it and if it has helped.
My daughter was just diagnosed. This is frightening
Have any of you with EDS and/or MCAS gotten the vaccine? How did you tolerate? Thank you
Hi 🥰🥰 I'm messaging messaging you lovely people on here because I wanted to let you know I've set up my UA-cam channel to try raise awareness for EDS and all the other conditions I have too 🥰 we have no specialists in Ireland so trying my best to spread awareness and share a bit of joy and positive vibes 🥰🥰 if you felt like subscribing it would mean the world!!! Lisa xx 🥰🦓🦓
P.s I've gotten the Pfizer vaccine and tolerated it well xx
I tolerated pfizer very well. Just a slight increase in POTS like symptoms for a few days. Good luck!
I have to eat laxative after every meal because Dr's dont even want to hear about gastroparesis , i think its because they dont know how to help you , im not 100% if that is what i have but i have same symptoms
I want to comment about the women speaking here....WOW, all so beautiful!...and smart too.
I agree I wish could have been a part of this. I get laughed at by Doctors and no treatment. No one will listen.
We have a helpline you can contact at ehlers-danlos.com/eds-helpline and virtual support groups where you can chat with others who understand ehlers-danlos.com/virtual-support
Oh wow I have motility disorder started megacolon had colostomy. Spread upwards peg tube about 3 years ago. Years ago they said I had a before didn't know why. Put me on a lot medicine push it through. I was so backed up stool in stomach & ppl asking when I was due. 😳😳 after all passed through took couple more weeks! Did colonoscopy found megacolon size 🏈 throughout entire colon. As kid I missed lot school bc my stomach hurt. 😩 eventually pediatrician Saud I had schoolitis. Mom felt horrible when found out about megacolon
Also yes my stomach does empty right. I don't put med thru peg. There's a medication recommended my Dr said no bc side effects likely cause uncontrollable jerks
Omw bladder kidney since about 3 or 4. Lots hospital stays infection & bladder surgery. Lifelong with that & ended self cath years. Suddenly couldn't empty used pee myself & bed. But, my bowels omw I was always 2 or3 weeks before a BM yes huge 💩. When bladder stopped working at same time I would 💩 no stop was horrible. Tried bowel training 0 colostomy was blessing.
And 1 hospital stay after my husband solved puzzle ( before colostomy etc) I was so backed up the bowel was pinching the urethra closed.
Thank you for this. I can't empty good. Try eat by 👄 not good. Peg tube I have a formula that makes my 💩 go. I take color daily if I remember lol. My problems don't seem as bad as these ladies. Thanks again for sharing. I can identify but 👏👏👏👏 for y'all
Ohh I have seizures too. Poor girl
I noticed that there's only women on this panel. Does this mostly effect women?
I have eds classic and I'm male but I do see mostly woman on the groups
There are some males with GI issues, EDS and some have feeding tubes going through the same as the panel, but in my observations I feel there are more females than males online in the support groups but I don’t know the true picture of the ratios of the different groups.
It appears that way, although men are taught to be strong and suck it up even if they’re believed more often than women. It’s the squeaky wheel that gets oiled.
I truly believe it will be when Men are more educated or easily diagnosed, the awareness for Ehlers Danlos will increase faster.
such brave young ladies....organic soft food and massage - chiropractic modalities may help and herbal supplements like ch;yrophy;
I have Ehlers Danlos HT, and I’m sure there is some valuable information to be heard in this video, but after hearing the panel embarrass themselves with the “my pronouns are” charade, I don’t care to listen to it.
Really unnecessary ladies!
This comment is what's truly embarrassing
Is gastro-paresis from EDS? Slow digestion can be an EDS symptom, but is tube feeding due to bowel obstruction? "My pronouns.." I hope this fad is over.