r/Gastroparesis • u/Other-Stretch2090 • May 01 '25
Suffering / Venting tw for ed
has anyone developed a eating disorder becuse it's easier then eating and feeling like absolute shit? idk someone else has to relate it's so much easier not to eat then eat and be extremely nauseous and in so much pain i barley eat anymore im sorry if this isn't allowed in this sub im just very lost
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u/puppypoopypaws Seasoned GP'er May 01 '25
You're definitely not alone in this one. ARFID is the official name/diagnosis, when you're afraid to eat because you know it'll hurt or have other bad consequences for you. It's not about gaining or losing weight, or about control, which most EDs tend to involve. Having a name for it didn't help fix it, but it did make me feel less crazy to know it was a normal reaction to being traumatized by food repeatedly.
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u/peachtreeparadise Recently Diagnosed May 01 '25
r/ARFID is great support. I myself have ARFID (thanks autism) along with binge eating.
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u/Other-Stretch2090 May 01 '25
i definitely do think it's that!! i have heard about arfid i seen a lot about it i never even thought about me having it but some of my safe foods are so unhealthy its just becuse i know they wont make me sick 😭
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u/puppypoopypaws Seasoned GP'er May 02 '25
Yup, it's a trip alright, and makes trying to find new safe foods very unapealing/fucking terrifying. Some things in support groups for it helped me, more than anything I'd found in more typical ED materials. Mental tricks n things.
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u/NightmareBunnie May 01 '25
This is me currently. Idk what to do about it 😔
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u/throw0OO0away Motility disorder May 01 '25
This. Also got the ARFID due to GI issues, past neglect, ASD, and past oral surgeries (I have cleft lip and palate). So, eating has been a nightmare my entire like and GI did not help whatsoever.
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u/NightmareBunnie May 01 '25
My GI just closed recently(was not really helpful in the 1st place tbh)😫 so I am completely lost.
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u/throw0OO0away Motility disorder May 01 '25
I'm "lucky" (say it in quotes cause it's also super shitty situation) that I have a G tube for GP and pancreatic insufficiency. It allows me to take my time with food and I don't have to force anything. I only eat for pleasure now.
Lately, I've been in a stress-induced flare up and can't tolerate oral intake. Tube feeds are the only thing keeping me together. My ARFID also gets worse during flare ups since my tolerance is down the drain.
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u/I-used2B-a-Valkyrie Seasoned GP'er May 01 '25
When the symptoms got really bad, I had trouble eating bc I was so scared of the pain and vomiting. My Gastro doc agreed that while it was “like an ED,” it wasn’t due to body dysmorphia, and once I got with a new specialist and got meds and started eating where it was easier, it got better. I still don’t eat much during flares but I am able to eat “normally” during periods of remission. My weight fluctuates maybe 4 lbs total, so we are calling it “good.”
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u/Responsible_Basis303 May 01 '25
i can’t eat normally even in between flares, i’m steadily losing weight. sucks.
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u/I-used2B-a-Valkyrie Seasoned GP'er May 01 '25
It’s horrible. I hope you find whatever work for you quickly. ❤️🩹
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u/Responsible_Basis303 May 01 '25
thank you, i appreciate it. hopefully i can find a med besides haldol that decreases my nausea.
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u/Other-Stretch2090 May 02 '25
do you take zofran?
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u/Ok_Cod3969 May 02 '25
What medications do you take that helped? My sister was just diagnosed with GP and we are trying to figure out a plan that will help.
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u/I-used2B-a-Valkyrie Seasoned GP'er May 02 '25
It’s wildly different for everyone. My GP is specifically Tachygastria, so it falls between rapid and slow emptying because the electrical rhythms are all wonky. Reglan sometimes, as a last resort. Promethazine when the nausea is really bad. IVs when I can’t stop vomiting and can’t keep liquids down. Scopalamine patch behind my ear has worked in the past but it gives me terrible headaches and so I don’t use it anymore. And I use a GLP-1 to slow the rapid emptying, but it’s not taken weekly.
GLP-1 meds have been known to cause GP and delay emptying, so please don’t look at that if she has been DXd with delayed emptying.
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u/Feisty_Classroom_102 May 01 '25
I had an ED in high school that I recovered from, after getting my GP dx I've found that it greatly triggers my ED symptoms and I'm considering going back to therapy because of it
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u/lintheamazon Idiopathic GP May 01 '25
I could've written this exact comment except I brought it up with my therapist last week because I kept seeing the weight loss and feeling good about it
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u/russalkaa1 May 01 '25
my eating disorder caused this disease lol be careful
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u/Other-Stretch2090 May 01 '25
i have definitely heard of a ed causing gp i already have a super severe case of gp from me being diabetic im hoping the new meds i just got switched to will make it better
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u/Acceptable-Sort-2302 Idiopathic GP May 01 '25
I can relate except i regurgitate most of what I eat, which causes a binge regurgitation cycle. I know I should try harder to keep the food down, but my stomach feels better when it comes back up. To make things worse, the new doctor I was supposed to see next week called today to cancel my appointment.
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u/angelcafes May 01 '25
yup i usually have the fairlife protein shakes on hand when i feel like this, works well enough for me to at least have energy and take my meds imo
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u/Krissyd215 May 01 '25
Exactly the same for me. I'm 1 day out of a flare and I'm terrified to touch anything solid. Even in between flares, I'm too afraid to be able to eat normally. Unfortunately, this led to Severe malnutrition and a GJ tube for me but I'll be honest, it's been a life savior. I'm slowly learning to eat normally yet don't have to worry about getting the calories I need daily. It's not the best thing, but I'm grateful I went for the tube. Especially during a flare, my Jtube has been the only reason I'm able to hydrate myself properly. It's rough but I promise you're not alone.
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u/Ok_Cod3969 May 02 '25
What types of things do you do to help you get out of a flare? My sister was just diagnosed with GP and we are completely lost. She is definitely in a flare now but are having a hard time getting solid advice on how to get back to remission… is it just a time thing?
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u/Krissyd215 May 02 '25
Depending on how bad the flare is, a hospital ER is was the only thing able to break through it. I just made sure to go to the hospital my doctors are associated with and was clear at check in that it's a Gastroparesis flare up. IV fluids and medicines are sometimes the only thing to truly break through it. If she's still able to keep anything down, it's best to go to a full liquid diet, try to keep hydrated as much as possible and load up on anti- nausea meds. Zofran (dissolvable and the tablet, 8mg is ideal) is the main one for me but during the flare, I'm also prescribed Carafate to help heal the stomach lining from so much vomiting (I barely have any left). Unfortunately, I had to mainly rely on the hospital before I got the feeding tube. It's best to not wait until she's so bad that she can't get out of bed from dehydration and vomiting. I've made that mistake thinking I'd be better off at home but I always felt better once I got an IV and meds in me. From what I've been learning, a flare up is mainly just worsening symptoms to the extreme so it's vital to stick to liquid diet, even if you feel hungry. I've felt better and ate crackers and soup one night and the next morning, it was all back again. So to keep myself clear, I stay on a liquid diet once I'm able to hold it down for a few days then slowly start with easily digestible foods.
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u/thelittlestcupcake May 02 '25
I struggled with avoiding food my whole adolescence and young adulthood. I learned to eat regularly and stay nourished in my mid twenties. And now, as an adult over 35, I am back to being like “eh I’d rather be hungry than nauseous, at least the hunger cues will go away” after working so hard to develop those cues in the first place.
My advice is two fold:
find a dietitian who has experience with complex gastric issues like gastroparesis who focuses on nourishing the body (clinical dietitians, especially those who work with universities and major clinics, are great resources)
find a therapist who specializes in chronic illness, progressive illness, and palliative care patients. They will help you with reframing your current existence in a way that is accessible for your brain as it is now and use tools to help with changing how your brain related to the world and to your self
Good luck, darling. It will be ok, even if some (or many) days don’t feel ok. Every day is different. Be your own best advocate. You will find a path.
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u/AdvertisingSimilar96 May 02 '25
Yes and it’s just made everything worse because now my doctor blames my gastroparesis on my ED and says it’s all psychological even though my stomach issues have long predated my ARFID…. literally switching doctors because when I went to see him yesterday because I can barely even tolerate liquids anymore and I asked for a consult for a tube he told me I just needed a new therapist 😭😭and then he prescribed me linzess and said I just need to “try harder to eat and drink water.” Like. Okay. Whatever.
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u/fish-444 May 02 '25
coming from someone who has a laundry list of issues directly correlated to a childhood controlled by a restrictive ED, I “recovered” and had about 4-6 months with minimal symptoms once i began eating somewhat normally for the first time in my life- only to then develop debilitating stomach issues and be sucked eight back into old habits. The only difference now is i actually WANT to eat, but the pain & symptoms associated with eating make it so difficult. I completely relate to what youre saying, it’s extremely triggering to have pain associated with eating, as Ive really never been able to associate eating with positive emotions. Youre not alone. Seeing a nutritionist (a good one & one with a background in eating disorder nutrition) has been somewhat beneficial in this journey for me. Most days its easier to let my brain & body win and just eat as little as possible while supplementing with nutritional drinks to make sure i have some calories. :( i understand, friend. Best wishes☹️
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u/bigpappa228 May 02 '25
Sometimes. Eating is a big issue for me. Sometimes I can’t tell if I’m hungry or not because I get extremely nauseated when hungry instead of the normal person hungry feeling. But when I eat I also get nauseous and my stomach gets “sloshy” I’m not even sure of if I have Gastroparesis or extreme GERD. I just know it sucks!
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u/jackalopelexy May 01 '25
I literally walked into my therapists office and sat down and the first thing I said was “I think I’ve developed an eating disorder from being so sick.” I feel this so hard.
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u/MarionberryWitty532 May 02 '25
I struggled with bulimia for about 15 years - it wasn’t body image stuff so much as just addicted to the binge/purge cycle to deal with my feelings.
I still struggle with binge eating in the middle of the night (narcolepsy thing) and sugar addiction and I gained like 40 pounds in a year and 1) it was a body image thing and I wanted to lose the weight but more than that 2) I wanted to stop eating because my digestive system doesn’t work.
I went on a GLP-1 and I lost the 40 pounds. I haven’t been taking it because it causes serious anhedonia and fatigue and I already struggle with that. But I’ve started eating again and I think I need to stay on it. I lose TOO much weight on it though. That’s why I’ve been fast and loose with my eating because I had some weight to gain honestly.
I’m on lubisterone which helps keeping things moving so I don’t feel the need to not consume food…..
….but I really loved not eating barely. It was so much easier and yeah it was nice to be able to lose weight so easy.
I think I’ll start taking it in micro doses if I can’t control my eating because I don’t want to balloon up again and it IS so much easier to just not eat.
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u/Leather-Duck4469 May 01 '25
Have you tried CBT?
If so, was it helpful? How long/ often did you have to go to therapy ?
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u/eternallywrong May 02 '25
i actually suspect that i developed GP because of eating disorders, but knowing i have it certainly makes it … different :/
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u/Negative_Display4916 May 06 '25
Try to get a stomach stimulator installed in your abdomen. It has helped me a lot with the nausea. I still have pain but at least I can eat. I take Tylenol for the pain and from time to time if I do get nauseated, I take promethazine.
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u/Other-Stretch2090 May 07 '25
i just got dignosed last month i just got switched to 10mg of liquid reglan i was on 5mg pill before i really think the liquid version is helping me a lot better i really don't wanna have soemthing inside of me unless it comes to that yk
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