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    Community Voices

    just needing some encouragement, i think.

    i am really frustrated. i have a really big bump in the middle of my stomach— upper abdomen area. it’s been steadily growing. my GI doctor ordered a CT enterography with IV contrast, and it didn’t show anything related to my stomach at all (this was after we’d also done some other non-invasive tests). i have a lot of other medical problems to deal with right now, but this bump really hurts and has been there for over a year now (actually, it’s been there so long that i’ve given it a name, just to spice things up a bit 😂). i’ve been worried we’re missing something for years now. i mean, it took from 9 years old to 12 years old just to get a diagnosis of CRPS, and at 18 years old (only a year ago) i finally received a few other diagnoses that explain things a bit better. but i’m still in so much pain, and my stomach is still a mess. i try to be so positive but i think my frustration sort of hit me just now, because unlike most of the time, i actually have a visible issue (aka the bump) attached to the pain i’m experiencing with it (like, this bump makes it nearly impossible to eat/have anything in my stomach without feeling like i’m imploding sometimes), but tests aren’t showing anything. i’m doing everything my doctors have told me to, even though it is extremely hard, but i just am not getting better. i don’t even care about diagnoses at this point. i just want to feel better, or even just be able to function even at a low level for a whole day! i’m not sure what i need, maybe i just needed to rant to a community of people that might understand. but if anyone has anything that might help, even just some life advice, honestly, that would really help. 💜
    #RareDisease #Gastroparesis #EhlersDanlosSyndrome #ChronicIllness #ComplexRegionalPainSyndrome #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #WritingThroughIt

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    Adele Espy

    When Your Chronic Illness, Gastroparesis, Means You Can't Digest Food

    I have severe gastroparesis and intestinal dysmotility, caused by Ehlers-Danlos syndrome (a genetic connective tissue inherited disease). Ever since 2010, I have not been able to digest food without throwing it up. After exhausting all medications to help me digest food, I had an ileostomy surgery in hopes that my chronic severe constipation would allow my intestines and stomach to work better. The ileostomy relieved the incredibly painful intestinal and colon pain, but it didn’t help my stomach or intestines. In 2019, I had a feeding tube inserted into my upper intestines and was told to not eat by mouth. This helped for a short time, but not without a different kind of stabbing intestinal pain. And it didn’t stop the constant vomiting of acid and bile or any tiny sips of water I drank to wet my dry mouth. In 2021, my gastroenterologist had a central catheter placed in my chest and switched me from tube feeds to intravenous nutrition (TPN: total parenteral nutrition), and inserted a gastrostomy tub e into my stomach for draining acid and bile and whatever liquids I drink. I am being nourished, but I still can’t eat food. I miss being able to enjoy food. I grew up in a foodie household. My mom loves quality cooking. She bakes everything from scratch, and she cooks dinner every night from scratch. She can smell a brownie and know whether it was a box mix brownie (which she will not eat despite her love of chocolate), or a homemade brownie. She is the master of chocolate chip cookies and has baked a batch at least once a week for her entire life, starting at age 12 when she developed a love for baking. She packed gourmet lunches and snacks at school through my senior year in high school. I was fed quality, natural, organic, homemade, local delicious food all my life. In my family, food is love. We have a summer house on a lake in New Hampshire where many of our closest friends live during the summer. It is one of eight camps, and together we prepare and enjoy extravagant meals throughout the season. We have gatherings with everyone and we all cook and bake amazing dishes to be shared. The owners of the houses stand up and toast the now-deceased gentleman who is the reason we all have this amazingly supportive community on the lake. Food is tradition, it is an expression of love, and it is a way we bond and socialize. Ever since I lost the ability to eat, I’ve struggled with my relationship with food and these dinner celebrations. For years I simply did not go to these events. But I miss the social aspect that food creates. I still bake and cook and prepare the meals with my mom, because I can’t stand missing out on cooking and baking with her — it is one of my favorite hobbies. I miss sitting around the table and talking, laughing, and joking with friends and family. I tried to go to dinners for years, but would often wind up in the neighbor’s house, puking in their bathroom. Then I tried attending the dinners and just not eating, but it was torture for me. I wanted to eat the delicious smells I was sensing. I felt so sad every time I watched someone spoon another delicious bite into their mouths and sigh with enjoyment. Then the dessert would come out, and I usually had made it, so I wanted to try it so badly. Most of the time, these dinners ended in me taking home leftovers and dessert, eating in private and puking all night. The leftovers and dessert were not what I was craving though. I was craving the love, the connections, the togetherness, the camaraderie, the celebration, the satisfaction, the peace, the joy, and the jovial conversations. I miss the experiences that food often goes along with. It was too hard for me to sit at a table and watch others eat, so I stayed home and missed out on all of the socializing and connecting that food is associated with. Not being able to eat food doesn’t just impact me on a nutritional level; it hurts my soul to not be able to be a part of the group. It is finally getting a little easier for me to sit with people who are eating, after years of not being able to join in, but it’s incredibly hard, and takes a lot of willpower to resist the tempting smells, and the delicious-tasting food. I’ve been practicing sitting at the table while people eat by having lunch with my therapists and doctors, and other providers who work in the building where I receive psychiatric services for post-traumatic stress disorder (PTSD). Each day they have a home-cooked lunch prepared by one of their staff/providers. They all hold hands and bless the meal, and thank the cook(s). I’ve helped the cook in the kitchen twice in the last two months, and it has been so healing to be around food, cooking with intention, and being able to join them at the table while they eat, and be a member of the conversation. Both times I have sat with them at lunch it has been very hard on me mentally. I dissociated, I panicked, I froze, I served myself something little and poked at it – wishing I could eat it, but knowing full well that it would make me sick if I did. But I’m getting better at tolerating being at the table, and being around delicious food without becoming overcome by grief and frustration. As this summer begins, and the meal gatherings and celebrations commence tonight for Memorial Day, I feel more prepared than ever. I know that it is the connection, love, conversation, and joyful energy I long for when we have gatherings. It is not just the food I miss out on. I plan to attend at least a short period of time at as many dinner celebrations as I can tolerate. I need to set myself up for success so that I don’t become overwhelmed and devastated, or fixated on when I can sneak leftovers to my room to eat in privacy, and then pay the price in the bathroom over the toilet bowl. I’m focusing on the people, the conversations, the present moment, and the energy that a gathering of loved ones creates. Since I can drain my stomach contents, I am able to drink clear liquids, so while everyone else is enjoying the food, I can enjoy as many cups of apple juice, ginger ale, seltzer water, and ice chips as I want. It’s not the same as eating food, but it’s as close as I can get. I no longer want to hide from social gatherings in an attempt to avoid the temptation to eat food. This year I am stronger than ever and ready to tolerate the devastation of not being able to enjoy the food, because I will be filled with a deeper satisfaction that comes from being in the presence of those who I love.

    Community Voices

    I’m new here!

    Hi, my name is Starbucks. I'm here because
    I am struggling with feelings of not wanting to go on. I have gastroparesis, CIPO, short bowel, TPN dependent, on transplant list. I really struggle because I can't live a normal life. Yet no one understands. All of my friends and family still have expectations. When I can barely get out of bed. I feel hurt because I explain over and over what I need. Primarily is not worked ng in the fily business. But I keep getting reeled in. Despite how many times I say I can't work. It's way to difficult and taking energy. I desperately need to prepare for my transplant. I feel so alone.
    #MightyTogether #Gastroparesis

    1 person is talking about this
    Community Voices
    Community Voices

    I seems to always have bad tastes in my mouth, anyone else and how to get rid of it. It makes my nausea so mush worse. Also anyone else with gastroparesis and thyroid issues? How to control them.

    Community Voices
    Community Voices
    Community Voices

    I'm new here!

    Hi, my name is Catfishcake. I'm here because I think I may have gastroparesis.
    I’m 58, F, and was in pretty good health until the beginning of 2022. I’ve got 2 sons in their mid-20s; I had awful heartburn (GERD) through both pregnancies and it continued afterwards, but was well controlled with ranitidine and then omeprazole from 2019. Suddenly in January this year my reflux got a lot worse and I had nausea and vomiting. My Dr doubled my omeprazole but that didn’t help and I had a few miserable weeks until I was put on famotidine and referred to a gastroenterologist in March.
    So far I’ve had a gastroscopy, a CT scan (abdomen and pelvis), an MRI scan, a H. Pylori test, blood tests - and these haven’t shown anything to explain my symptoms, which are:
    Inability to eat very much - I am struggling to get in 1200 calories on a good day
    Early satiety - I can’t remember the last time I had a normal-sized meal; my portions now are tiny
    Inability to drink enough
    No appetite for food
    Permanent nausea, worse when I eat or drink
    Feeling horribly bloated when I do eat or drink, and this lasts for several hours after eating/drinking - I can feel my stomach as a hard tense lump below the right side of my rib cage
    Inability to sleep much as the nausea is worse when I lie down
    Exercising is difficult with an over-full stomach (and it never feels empty) so I can’t go out walking at present
    Awful constipation - I was comparing notes with my brother-in-law who is on high doses of opioids for cancer pain and I am bunged up even worse than he is.
    Unintentional weight loss - which I guess isn’t surprising as I can eat so little. I’ve lost 21lb so far and it’s continuing.
    I’m currently taking domperidone 10mg 3x a day - I’ve been on it for 4 weeks now. At first it seemed to be helping and I went out for some walks, and last week, when I started taking it last thing at night it helped with the sleeping. However, the last couple of nights have been bad again and I’ve only slept 3 or 4 hours.

    I’m still waiting for a diagnosis; the best the gut Dr has managed so far is thinking I might have post-viral gut dysmotility. However, I haven’t had any viruses in the last few years.

    If you’ve got this far, thanks for reading!
    #MightyTogether #Gastroparesis

    1 person is talking about this
    Community Voices
    Community Voices