Community Voices: Jessica 'Living with Gastrointestinal (GI) Pain and Gastroparesis
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- Опубліковано 19 тра 2021
- Jessica shares her experiences living with gastrointestinal (GI) pain and gastroparesis.
"My name is Jess, I am 23 years old and was diagnosed with hypermobile EDS (hEDS) aged 20 after over 18 years of problems. I have major gastrointestinal involvement with my hEDS.
I have always enjoyed using my flexibility to my advantage and tried to keep myself strong through dancing to a high level. I also recently qualified as a Paediatric Nurse in order to use my experiences living with chronic illness to help others."
Evidence suggests a link between connective tissue disorders such as the Ehlers-Danlos syndromes (EDS) and digestive system (gastrointestinal, GI) symptoms. Patients with EDS can come to the doctor with hernias, out of place organs, and prolapse, as well as functional problems such as changes in the speed of the digestive system (gut motility). Patients with hypermobile EDS (hEDS) show GI symptoms related to the gut and often meet the criteria for disorders such as indigestion and irritable bowel syndrome. The presence of GI symptoms in EDS patients influences their quality of life. Specific evidence based guidelines for GI symptoms in EDS patients do not exist, but there is recognition that precautions need to be taken for those undergoing surgery. Future studies are required to identify mechanisms leading to GI symptoms and more specific treatment guidelines are required.
Read more on gastrointestinal issues in EDS and HSD: www.ehlers-dan...
Watch videos on gastrointestinal issues in EDS and HSD: • Gastrointestinal
One's own pain is in fact personal. If you're in what you consider to be elevated pain levels, who is to say you're not? Or, when you're experiencing pain and need a break and someone else says to suck it up because their pain is worse than yours and they're able to continue on at that same activity. So frustrating.
Myself and a cousin both broke bones & we only knew because we couldn’t walk on it. Neither of us had the screaming agony I’ve seen people in. Both a & e drs we saw took us seriously. She was almost sent home with a broken thigh bone, she thought she’d pulled a muscle falling. I thought I’d dislocated my ankle and the pesky thing wouldn’t stay in joint, as much as I tried (tip, drs don’t like anyone doing that) because I was just sat quietly it was a while before I was seen. I told the dr what happened, she grabbed my leg roughly onto her lap. She snipped of the bandage and my ankle and foot went plop…she apologised profusely, saying she had wrongly assumed it was just a sprain (sprains can be very painful too) She said it was badly broken and why wasn’t I screaming? 🤷🏼♀️ I tapped my trusty pain patch, the dr looked at the strength and said no I should still be screaming. Quite an interesting evening with the trail of medical students brought to see me. See what party tricks I could do etc.
I’d broken both bones in my ankle/lower leg after blacking out because of POTS. So I didn’t think it was very painful, it swelling inside a cast & stretching skin and stitches was horrible. I think my back when it’s bad is far worse than a break, hot glue gun burns especially on finger joints, on nails and under them are horrendously painful.
I do think there needs to be a lot more research into why.
If you go to hospital with a broken finger & you say it’s a pain level 5, then I go in and say mine is a 10 & im showing really strong signs, I’m rolling around, calling out…I’d probably be given more and faster attention than you. That’s not right, as you say we’re all different. The chiropractor I see is amazed when I can tolerate him doing quite harsh moves, he’s an mma fighter & often the dr at competitions and the men have been crying in pain doing what I’m fine with. Maybe my body is used to bone and muscle pain and if I had say kidney pain I’m might be at a 50 in pain 🤷🏼♀️
I just watched your video and I’m sitting here crying my eyes out because your explanation on every topic you mentioned hit the nail on the head. I am 62 years old and have been told for years that everything is psychiatric. Even when I got a GP dx and I had a gastric pacemaker and then it broke and I had surgery at the best hospital in the USA, it doesn’t matter. Now I have feeding tubes and recently dx with EDS. Thanks so much for sharing and lifting me up.
👏🏼👏🏼👏🏼🌸💙
Lucky me I have spinal stenosis and, I was just diagnosed with gasteoparesis and, it's truly hard to deal with. I'm in constant pain and, my stomach swells so bad that, my stomach looks like I am 9 months pregnant and I'm not. It's hard to explain the pain and strong discomfort. My pain meds make my stomach worse but, without the meds I'm in so much pain that, I can't walk or move. Thank you for helping to bring awareness.
Thanks, yes we need to listen and bring awareness to the public. EDS also affect families too. Finally my daughter was diagnosed but was a lot of heartaches getting there.
Hi 🥰🥰 I'm 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 🥰🦓🦓
Sitting here with 20 plus years with untreated EDS. Crying my eyes out because you are speaking my truth that I have tried to say to anyone who will listen. Im down to eating applesauce 1x day falling apart. I wish someone would offer anything to ease a little bit of my pain.
Hey there, how are You? Has anyone helped? I pray so.
I am awaiting my genetic tests but found Slippery Elm Bark Powder eased the keel over in half (can’t stand straight pain) eased with Slippery bark elm powder. It won’t cure hEDS of course but it eases the pain by healing the lining (mucosa) of the gastrointestinal tract stomach and bowel. It’s really worth researching and grabbing some from the health store. ❤ to You and strength to endure
This is where I'm at today, please tell me there was help for you this last year? I have gene markers for EDS and am hyperflexable. I'm in so much pain, I'm weak, I'm starving, and I can't seem to find hope.
I have hEDS, i m a male. I suffered from very very slow transit all my life (not sure if it s really corresponding to gastroparesis but it s probably that as my stomac feels full every time i eat, and i have reflux all the time and the pain in all the disgestif system). I had once to get hospitalized cause i didn t went to the toilet for more than 3 weeks (my belly looked like i was 9 months pregnant lolol). Then i learn to use laxatifs and anema (small amount of water, and it s probably not adapted to a lot of us, as for many of us, this part of the body is very fragile, but for me, on this point, it s fine). Few years ago, i switched to a vegetarian diet (after i got my diagnose at 33 yo). In my case, it really helped a lot. The transit is still slow and painful but so so so much less that before when i was eating meat for each meal. Now i noticed that i start also to have problem with chess, so the next step is to cut that also (already cut milk when i went into vegetarism). I also avoid some beans that are very difficult to digest. I also learned to massage my belly to help the transit to function better (thai massage technic)..... I dont know if these tips could help you or others members of our community. But i tried it, because in Eds forums a lot of members said it helped them. And i confirm that in my case it helps. A lot.
I wish you the best, and thank you so much for your testimony and for bringing awarness over our mutation.
I'm a male with hEDS as well. It seems like doctors don't notice EDS in males as much, but they often seem to be oblivious to EDS altogether.
Have they tried you on Mestinon yet to treat your digestive motility issues? It's an older medications, but researchers have repurposed it as a new treatment option for both digestive dysmotility and POTS. This makes it a popular medication for EDS, since it can treat multiple issues that are common with EDS.
Sorry to read your comments 😢🌸
A lot of the medications we take slow our digestive system down. I had an appointment with a rheumatologist, she’s about 15 years out of date. I said morphine wasn’t helping at really bad times, so she wanted to take me off morphine! I needed something more.
The week after I saw a gastroenterologist, he told me about it slowing digestion. But ‘you need it for your Ed’s pain’
He understood! Crazy he understood more about it than the supposed ‘expert’ I refuse to see her now.
She would say I needed to lose weight and do exercise like badminton and I’ll be cured! 🤦🏼♀️ hope she’s retiring soon so people will get better help. She doesn’t like patients knowing anything about eds. she told me not to research it because all of it online wasn’t by experts….I told her I already know a lot and I’m capable of deciding if it’s from a good source or not
I'm another EDS guy. Bendy everywhere.
Recently I learned about the GI issues by trying to figure out all my stomach issues. I don't have an official diagnosis yet, but my gut feeling is that I have gastroparisis as well.
Certain foods seem worse than others. Certain spices cause me grief ... as long as my diet is rice and nuts and berries I'm usually fine ...
Hi 🥰🥰 I'm 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 🥰🦓🦓
Have they tried you on Mestinon yet to treat your digestive motility issues? It's an older medications, but researchers have repurposed it as a new treatment option for both digestive dysmotility and POTS. This makes it a popular medication for EDS, since it can treat multiple issues that are common with EDS.
Hello, I've been diagnosed at 47, I'm 53. As a child I felt unconfort, asking my parents to remove my legs. When I was a teenager, pain became at gym, I cried sometimes. And the real pain 24/7 I was 16. Some of the doctors said that I had something but they didn't know what, probably because of the anxiety, depression, stress. The kiné had not hear it while studying! When I was finally diagnosed, I read a document written by a specialist in Paris (I am Belgian, and there is no specialist in my country) and found almost all of the symptoms I experienced since I was a child. I have stomach pain and IBS, etc etc. It gets me mad when rheumatologist or physiotherapist claim that EDS H doesn't mean necessarily having pain.!? What 's their point? A little hypermobility and good bye, find a psy. The 'you look fine', of course because when I 'm'not fine, I can't move at all , so I cancel.
Thank you for the awareness and I hope you' ll be fine.
I’m glad I found this video. It’s been about 5 years of severe pain in different gi regions, like you went threw so many scopes, tests etc with no answers aside from EDS-H I am at a point I can barley get out of bed. Eating drinking all feels like glass moving threw me and there’s no treatment aside from different therapy’s that offer little to no relief or ways to supplement the lack of nutrition by different ways of administration. On the verge of giving up but knowing there are others like you have been threw it and are still here gives me strength.
Well articulated. Thank you. It was indeed helpful. 😊
Hi 🥰🥰 I'm 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 🥰🦓🦓
Thanks for sharing your story! Since I have hypermobile type Ehlers Danlos syndrome, my doctors prescribed Mestinon since it can treat both gastroparesis/dysmotility and dysautonomia/POTS with a single medication. It's worked really well, and has also reduced my fatigue and exercise intolerance.
My sister has type 3 Ehlers Danlos syndrome and she also may have gastroparesis.
Thank you for uploading this, I am having much difficulty with gastroparesis and GI pain difficulties and getting help in Australia
I have gastroparesis too ! It's a tough one ! Sending love ❤❤ p.s just set up my channel to raise awareness and spread a bit of joy If it's something you're interested in ❤💕xx
Have they tried you on Mestinon yet to treat your digestive motility issues? It's an older medication, but researchers have repurposed it as a new treatment option for both digestive dysmotility and POTS. This makes it a popular medication for EDS, since it can treat multiple issues that are common with EDS.
@@lisaszebralife5772 thank you will check it out!
@@Dulcimerist Waiting to see a motility specialist but thank you for mentioning I will bring it up in the meantime! Thank you so much 💕💕
@@carolinehaf21 Thank you so much 💓💖
Oh my gosh, you are so wonderful for telling people this!! I'm afraid to advocate for myself because I'm always denied and treated as 'drug seeking'! I was on pain mgmt for 10yrs but had to move & ALL dr's I called as a new patient-just general practice- wouldn't see me because I was on opiates! I had to use a treatment that doesn't help pain in order to avoid serious withdrawals..This was 6½yrs ago and my quality of life, isn't quality & it isn't life. I'm tapering down the med I'm on. I'm having trouble getting by, too afraid to advocate for pain relief. Thank you aging, I'm saving your video in my library ♡
I've experienced gastro pain for years. Had many of my organs removed after Sepsis set in despite being told they couldn't find anything or it was in my head. Taking Creon and Pepsid for my stomach now. I was also informed the pain could be due to sciatica nerve pain from my spine.
So very sorry to hear you were told that Stormy, and glad you have treatment currently.
😢🌸
This was really good to hear. I’ve been struggling with pain and other symptoms for nearly a decade now and I’ve finally got one diagnosis of Gastroparesis. I’ve got other stuff going on aswell maybe EDS but still don’t know yet. But it’s important not to give up even when all the medical professionals are making you think you’re the problem! Thank you so much for this!
I hear you!
She's speak so well about everything and the pain part. It's a real struggle to communicate. I wish she's safe and well, and everyone here who's struggling to be safe, it's not easy at all. I wish too that there's more content in Portuguese subtitles, here in Brazil is so hard to find information for public, even with our free healthcare, the diagnosis and knowledge is still so few and the ones specialist are hard to contact and expensive.
I’m sorry about that 😢 it must be very frustrating for you 🌸
I do this for my Ukrainian relatives when they want to see a video that’s in English. If you click down to bring the main description up then scroll down a little and it should say ‘transcript’ do screenshots of that. Then go to an app, something like google translate. Add them as a photo/picture translation. Then ask it to translate into whichever translation. Then if you save them & number them you can pop them up and follow along with the time stamps 😀🌸
Not great I know, but it might help a little.
You can reply to comments in most languages and UA-cam will translate them to whatever language. Just like magic 😀🌸
You can find content in Portuguese here: www.ehlers-danlos.com/resource-category/vsc-2021-por/
You speak for so many of us with hEDS Jessica. You're obviously a very positive person and it sounds like you enjoy your career. I'm lucky that I've not had to have a feeding tube. For me, I have thickened fluid and pureed food, except when I've been unable to swallow at all and have had to get by on IV fluids. I have a pain scale that I tend to reset at 3 or 4 out of 10, because I get that kind of pain most of every day. Thanks again for sharing your story. Warm regards, Dan :)
I had ulcers all through my stomach small bowl my duodenal was so damaged ended up getting surgery after suffering 2 1/2 years cause drs said it was all in my head. Once I had open surgery they removed feets small bowl duodenal and also vagus nerve when they went to remove most stomach they seen big tumor that was connected to head pancreas and grew connected to my stomach they took biopsy then closed me up then 8 weeks later went for wipple surgery. It’s been 9 months from last surgery now diagnosed with severe gastroparesis. Drs always think your not suffering I’m still suffering after 2 major operations now this and have inflammation where connection is from small bowl they reconnected to top stomach. I’m sorry to hear your story. I know the pain.
Thank you sooo much for sharing and, somehow, validate our pain and our reality. As you said, it's hard to know what is to live in pain everyday and ours loved ones get on this struggle. Thanks for ease this communication between us zebras and the normal ones!
I just wanted to say thank you for sharing this. Every point you said made me feel so validated.
Thank you for speaking about this topic so openly and bravely. You’re ability to articulate this hits home hard and I will be sharing this with family and my doctor so they may hopefully better understand what I am dealing with constantly. I am now on a soft food and liquid diet which although it has helped, has certainly NOT solved any problems and I have been on a 2 year waiting list to see a gastroenterologist for over a year now. My doctors and pain clinic are trying to help and yes, opiates are the ONLY a thing that helps and I really don’t like taking them because I’m concerned about the potential negative side and/or long term effects. Thank you for sharing your experience, knowledge, and advice in such an approachable and well articulated way.
I wish you the best. ❤
Thank you so much for giving a coherent and approachable voice to this issue! ❤
I haven’t been officially diagnosed with EDS as I’ve not found a competent medical team where I live but I have a background in natural health and feel very confident I likely have EDS. As a PSA to others that suffer with chronic pain, please explore all of your options. I don’t get on well with pharmaceuticals so I turned to the herb, kratom, for opiate-like pain relief, and I now cannot live without it. I don’t have a dependency on it, like I would’ve on pharma drugs, so on the good days I can skip it altogether and count my blessings without any withdrawal. I’ve also found red light therapy (also called LLV, phototherapy) to be extremely beneficial overall. Some days all I can do is lay in front of it and then the next day, I feel so much better.
I’m on a journey now to work on altering my genetic expression to mitigate or even eliminate some of these “permanent” disorders. The science is new but it exists that this can be done and I intend to benefit from it.
Please don’t give up seeking ways to get relief and wellness!
Beautifully articulated! Blessings on your health journey!🤍
I have gastroparesis. Diagnosed in 2017. Many days I only eat one small meal. Yet I’m still obese, but lost 15kg so far. I was doing reasonably well on pain meds (have chronic back pain from a herniated disc), but they’ve been cut back 50% in the past year, and now I have debilitating insomnia. Some nights I don’t sleep.
I spend most of my time in bed. Before chronic pain struck me in 2015, I was a mathematician. Now I barely bother with anything. I’m in too much pain to concentrate. I just don’t want to be alive anymore. I’m not going to kill myself, but I wished that G-d would just take me.
I spend most days in bed. I’ll wake up feeling ok, and then within an hour, it’s d*. I’ll lay in bed clenching my gut, praying I pass out. My only joys are when I’m dreaming. That, my parents, sisters and dog.
But it must be painful for my family to watch. My mum said it’s almost like I’ve given up (that was back in 2018). I hate the medical system, and will only go to ER if I’m dying. I hate my doctor (treats me like a junkie for being on opioids), nurses (same reason), pharmacists (same reason). The only healthcare workers I like, are psychologists. I had a psychiatrist for ADHD, and he was an a**. 1 year after being discharged, I see his average rating is 1 star. I wonder why? 🤔
I don’t want to live until 80. I don’t even want to live until 50 (I’m 32). Unless they can fix, ease my suffering or let me go in peace.
Blessings and strength to you young man 🙏🏽💙 keep trusting God.💪🏽
I feel exactly the same! Reading your comment I feel like I wrote it. I’m in pain almost every day of my life, there is no joy , no future, no reason. Yet the truth is we must press on and endure for those who love us and need us in their lives. Trudge on !🙏
I’m 33 and I was diagnosed at 32. I feel the exact same way as you. I’m crying in pain as we speak in bed. Thank you for sharing your story.
Been 2 years now of chronic pain , random pains since I was 16 ( 37 now ) the pain is brutal . However , i am on a wait list to be tested for EDS . Hyper mobility was noticed and severe damage to my endocrine system. The pain is unreal and wouldn’t wish it in anyone .
Wonderful insight. Thank you very much.
Thank you for this, I’m still young but I’ve been interested and have done so much research on stuff like this because when I get older I want to be a pediatric gastroenterologist.
Thank you for this
I’ve had costrochronditis since February an infection in the cartilage of my ribs and the cartilage has come away from the bone and it just won’t heal , I’ve lost 10 kilos down to ultra thin at 40kgs (7stone) at 5’8, 173cm... Australia revised opiates last year and now you can’t get any opioid medication unless you get a review by another dr every year and scripts now without repeats .. so you have to go to the GP every month just to ask for my scripts and my GP HAS to call up and get authority numbers, I feel like crap ... it’s not even covering the pain I’ve had with the costrochronditis on top of my usual EDS pain . It’s affecting my gut so much , I don’t know if it’s referred pain , or why my stomach is so upset at me for being in this much pain but if I don’t heal soon I truly will fade to nothing .. I’m embarrassed to go out and be seen so thin , as my ribs hurt so much I can’t use my cane and I can’t breathe deeply which I use as a relaxation technique... I’ve been trapped in this painful body for 46 years and I don’t understand how a human is expected to just put up with this much pain ..
I can’t for custody reasons move back to Melbourne, where I had a great team and pain specialist that would give me ketamine infusions and magnesium and Vit c infusions in the hospital over 7 days and it gave me 6-12 mths of pain relief, they won’t do that here at the hospital. They won’t even remove my one ovary ( have severe endometriosis) to stop that pain as I’ve been bleeding almost constantly for over 16mths .. I find a good Dr and after 5-10 yrs it’s like they are so desensitised to me always in pain ... thank for your upload ... any advice for this pain and gastro paresis? My dr prescribes maxalon for the nausea and it supposedly helps evacuate your stomach .. buscopan and any muscle relaxers and heat wheat bag helps me and peppermint tea or oil in my water.. xx love from 🇦🇺🙏🏽🦋🦋🦋
i would say bless you. but not in this case, for obvious reasons.
i am so sorry for all people with EDS. and my christmass wish is for all of you to feel better.
There is people who understand and feel
wish my tears would be any help to any of you.
Neurofeedback and biofeedback might be able to help if damage to the autonomic nervous system is in the brain, which is usually what happens. I would also recommend the Comra laser therapy to heal any tissue or nerve damage.
No they don't. Changed my life!. Excellent video, thank you
Thank you. Very well said and informative
Thanks sister, bang on.
The gi pain has been some of my worst from EDS
I am in this boat right now, I have loss a tone of weight and can't keep anything down and normally only able to eat once a day. I cry daily and just wan to lay in the bed all day and I still don't have all the answers
Do you feel nausea ?
My pain is so bad I don’t know how much longer I can take it. I have Eds and all the other crap, recent dx of gastroparesis after 30 years of agony. I get no specialist help for any of my conditions, I live isolated and scared because the way I have been treated. I’ve come off all my meds because they make it worse. It’s so cruel to suffer this
Thanks for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈
Doctors where i live they wont even test me to see if i have gastroparesis , its like they dont even want to hear about it.
I feel you! I was having what I KNOW was a gallbladder attack, went to Immediate Care (IC), she rx'd me heartburn med.😠😤I HAVE heartburn med & asked for an ultrasound because I might be having a prolapse of something around the gallbladder...NOPE she ignored what I said. Told me I.C. looks for active infections and ordered a UA to see if there's any bladder infection! BUT sent me with a plan that would take a while to explain but ends up with a test for h.pilori....after 2wks. That's not an immediate infection test. It was so screwy. This is why I gave up going to a dr for help! It wore me out for days after on top of the GB attack! It's very scary being sick. Best wishes to you ♡♡
Honestly I think my sister may have this and it’s sad to see how much she’s suffering
They made me crazy for 10 years told me it's in my head and I lost my job I don't know if we lost are home yet how does your head feel when you in a flair up ? I get loopy and I can't help my self can't move or speak
I am sure, that if I tell you I get gastroperesis from applying excema cream to my cheeks, that you may become far more inconvenienced. I also tried collagen cream, but with anti-wrinkle (tightening) formula. Eggs are a favorite food for the collagen, chocolate for the elastin. An apple a day may illeviate inflamation. Wishing you the best.
Thank you for your video. I am now a bit desperate with my 13yo EDS boy, he is with abdominal pain and nausea, since months ago, now worsen vomiting, and doing many tests. Could someone please advice me, as the symptoms of gastroparesis and gastric cancer are so similar, how can you tell the difference?
Did anyone else go through dry heaves only?
I've had dry heaves off and on, since late September
It’s either just the nausea (sometimes pain induced) or GERD, ie I have uterine varicose veins and it can obstruct the renal tract (anything that obstructs bile raises GGT and ALP enzymes) and also perhaps could contribute to GERD. Also it is like our whole esophagus contracts and if it opens the valve I’ve lost bile, it’s horrible. It has that wave like pain that crescendos then finally wanes after it’s hit a high peak.
But I’m allergic to eggs to and I can’t be in a house with them cooking eggs. My son ate eggs came home, I woke up and was sick and found out he’d eaten eggs that morning.
I’m so glad when it’s the dry heaving because I am so underweight, I hope it resolves for You though because it’s almost enough to cause hernia aye… small meals often n find out allergies
Very interested in this video unfortunately you're speaking way too fast with your accent I cannot understand most of what you're saying
The video has captions so you can read what is being said and click on the "show transcript" feature.