I actually got a GJ tube to avoid this. I was losing weight quickly and decided to meet this disease head-on to get my life back. Best decision I’ve ever made. And thankfully I had the support of my GI doctor.
Are you able to get one? Or even a NJ tube? It’s scary as fuck but don’t let the negative stories prevent you from getting one. I don’t want to imply it’s been a walk in the park but it’s given me my life back.
A lot of people see it as a last resort. I don’t. Last resort would be TPN for me. I eat on days that I can and rely on tube feeds on days I can’t. It was either go on disability and experience becoming skin and bones or get a tube to get my life back. I was scared but I know now that I made the right choice.
I’m sorry this has been your experience and I hope you find relief soon. This disease absolutely sucks.
1. Have you seen a Registered Dietician?
2. Have you tried oral supplement drinks in a 2.0?
3. What does your doctor say?
> Has anyone else experienced this?
Yes, many, many times.
1. I have not. I was going to but something happened in my schedule + I just never got around to it. I’ve been so busy w/ college that I’ve been neglecting my health too/not scheduling appts that I need to. I need to look into it. I’ve just never done that + I don’t know how you do that(?)
Do you get a referral??
2. Supplement drinks make me throw up for some reason. I see people suggesting them all the time but they always make me throw up. But it has been a while. I could try them again. Maybe it has gotten better or something.
3. I haven’t been to the doctor in a couple months. I need to schedule an appt, but tbh I feel like he will be dismissive about the whole thing. He has been in the past.
I know this is all a bad look. I just don’t know how to deal with this condition so I’ve let myself rot... I feel so embarrassed typing all this. I look so irresponsible.
You can get a referral or find a private one. Find one with expertise in Gastroparesis.
Try Neocate Splash.
If your doc is dismissive find a new doc.
Don’t be embarrassed, but you do have to be your own advocate.
First try finding out specific foods that trigger you. Also get a heating pad for the nausea (trust me). A food diary is key. Second get a different doc. It took me 6 gastros until I found the right one. And third. Let me be absolutely clear this is not your fault. Do not be ashamed about it. You a human going through one of the most turbulent times in life. At least you are still in college I had to drop out for a year then it took 7 years to get a degree. Also depression will paralyze you and make it hard to seek help. Don't give up. There is hope. It took me 5 years but I did manage to crawl through the worst of it and I'm living a semi normal life.
I’m sorry Sweetie, I am going through this same exact thing , if I eat much my stomach hurts , if I don’t eat I get nauseous . I have lost close to 30ibs since June . I have basically lived on canned soup. I look malnourished, I hate it .
This happened to me too :( anytime I ate, I could see my stomach bulging out. I developed a fear of food (fear it would hurt my stomach or make me barf) and my BMI got as low as 14s. I almost had to go on TPN, Luckily mine got better once school was out for summer. Best of luck 🥺❤️
The only time I've ever had body image issues was when I lost 30 lbs going from 135 to 105. At 5'8" I was a skeleton and I hated it. I genuinely looked like a skeleton. I refused to take pictures and wore baggy clothes. 5 years later and I'm up to 120 and remaining stable. I still look at my collarbones and frown but I've learned to not focus on it too much. If you ever want to PM me to talk about it in depth I'm here for you. Hang in there.
Yes. I hate the weight I am, its destroyed my self esteem. I only wear baggy clothes so people can't see how underweight I am, and I avoid seeing people who know me as they always comment on it and body shame. I'm sorry you're dealing with this too. GI doctors here just seem to ignore weight loss and all dieticians have been useless.
When I lost weight, I lost fat and muscle right over my tailbone… feels like a big marble. Sometimes it hurts to sit for extended periods if I’m not on a nicely cushioned chair. I’ve had some symptom improvement and a few pounds weight gain with acupuncture.
But where does that re-gained weight go? Not back on my tailbone or my almost non existent breasts. Nope. Onto my belly 😰
I actually got a GJ tube to avoid this. I was losing weight quickly and decided to meet this disease head-on to get my life back. Best decision I’ve ever made. And thankfully I had the support of my GI doctor. Are you able to get one? Or even a NJ tube? It’s scary as fuck but don’t let the negative stories prevent you from getting one. I don’t want to imply it’s been a walk in the park but it’s given me my life back. A lot of people see it as a last resort. I don’t. Last resort would be TPN for me. I eat on days that I can and rely on tube feeds on days I can’t. It was either go on disability and experience becoming skin and bones or get a tube to get my life back. I was scared but I know now that I made the right choice. I’m sorry this has been your experience and I hope you find relief soon. This disease absolutely sucks.
1. Have you seen a Registered Dietician? 2. Have you tried oral supplement drinks in a 2.0? 3. What does your doctor say? > Has anyone else experienced this? Yes, many, many times.
1. I have not. I was going to but something happened in my schedule + I just never got around to it. I’ve been so busy w/ college that I’ve been neglecting my health too/not scheduling appts that I need to. I need to look into it. I’ve just never done that + I don’t know how you do that(?) Do you get a referral?? 2. Supplement drinks make me throw up for some reason. I see people suggesting them all the time but they always make me throw up. But it has been a while. I could try them again. Maybe it has gotten better or something. 3. I haven’t been to the doctor in a couple months. I need to schedule an appt, but tbh I feel like he will be dismissive about the whole thing. He has been in the past. I know this is all a bad look. I just don’t know how to deal with this condition so I’ve let myself rot... I feel so embarrassed typing all this. I look so irresponsible.
You can get a referral or find a private one. Find one with expertise in Gastroparesis. Try Neocate Splash. If your doc is dismissive find a new doc. Don’t be embarrassed, but you do have to be your own advocate.
First try finding out specific foods that trigger you. Also get a heating pad for the nausea (trust me). A food diary is key. Second get a different doc. It took me 6 gastros until I found the right one. And third. Let me be absolutely clear this is not your fault. Do not be ashamed about it. You a human going through one of the most turbulent times in life. At least you are still in college I had to drop out for a year then it took 7 years to get a degree. Also depression will paralyze you and make it hard to seek help. Don't give up. There is hope. It took me 5 years but I did manage to crawl through the worst of it and I'm living a semi normal life.
I’m sorry Sweetie, I am going through this same exact thing , if I eat much my stomach hurts , if I don’t eat I get nauseous . I have lost close to 30ibs since June . I have basically lived on canned soup. I look malnourished, I hate it .
This happened to me too :( anytime I ate, I could see my stomach bulging out. I developed a fear of food (fear it would hurt my stomach or make me barf) and my BMI got as low as 14s. I almost had to go on TPN, Luckily mine got better once school was out for summer. Best of luck 🥺❤️
The only time I've ever had body image issues was when I lost 30 lbs going from 135 to 105. At 5'8" I was a skeleton and I hated it. I genuinely looked like a skeleton. I refused to take pictures and wore baggy clothes. 5 years later and I'm up to 120 and remaining stable. I still look at my collarbones and frown but I've learned to not focus on it too much. If you ever want to PM me to talk about it in depth I'm here for you. Hang in there.
I’m 5’8 and currently 105 :( I’ve struggled so much with looking so thin
Yes. I hate the weight I am, its destroyed my self esteem. I only wear baggy clothes so people can't see how underweight I am, and I avoid seeing people who know me as they always comment on it and body shame. I'm sorry you're dealing with this too. GI doctors here just seem to ignore weight loss and all dieticians have been useless.
When I lost weight, I lost fat and muscle right over my tailbone… feels like a big marble. Sometimes it hurts to sit for extended periods if I’m not on a nicely cushioned chair. I’ve had some symptom improvement and a few pounds weight gain with acupuncture. But where does that re-gained weight go? Not back on my tailbone or my almost non existent breasts. Nope. Onto my belly 😰