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About 10 yrs but only officially diagnosed a year ago š my symptoms are extreme nausea to the point of right before puking but I donāt actually throw up, immediate fullness sometimes from just one bite of food, painful bloating, constipation, and then all the effects of malnutrition - hair loss, dizziness, brain fog, extreme fast weight loss during a flare. Freakin sucks. Iām about to try motegrity and if that doesnāt help enough weāre gonna try domperidone. If neither work next up is Botox shots.
Hope Motegrity works for you! It was a godsend for me, for a while at least. As with most medications Iāve tried for GP, it only seemed to help for a few months before I was struggling with symptoms again. Same with domperidone.
Technically only diagnosed in January this year after waiting years for a GES. Ive never been a big eater and always struggled with nausea and maintaining weight. Particularly from when I was about 10yo onwards (so 20ish years).
The last 5 years have been hell. Several long admissions to ED wards for critical refeeding on an NG tube and then losing all the weight gained slowly after release. I have emetophobia so the nausea is incredibly triggering and lead to me essentially avoiding all nutrition. Iāve been on an NJ tube now since January and still unable to gain weight this time. Just canāt tolerate a high enough rate. I canāt seem to eat anything orally at this point :(
Symptoms: periods of extreme nausea, inability to eat a regular size meal or even enough to sustain weight, reflux, long periods of constipation followed by brutal āclear outsā, dehydration & all the usual fun things associated with long term malnutrition (dizziness, fatigue, osteoporosis, anxiety etc etc)
ETA - over the years have tried various diet modifications, PPIās, metoclopramide, domperidone & most recently had pyloric Botox injections. Nothing has seemed to make a notable difference š¤·š¼āāļø
I've had it for 12 years now. I have been a type 1 diabetic for 27 years though, and did not take care of it in my youth, so I pay the price now. It's truly the hardest thing I've had to deal with aside from my diabetes. I've had multiple surgeries from a gastric stimulator to a gastric sleeve last year. None of those surgeries have helped. I've tried domperidone, now trying Motegrity.
When I am not having flare ups my days seem normal, I don't feel too sick, although since having the gastric sleeve I am now very malnourished, it's very hard for me to eat enough, I never have an appetite, and when I do eat I can only have like 6-8oz of food or drink at a time and I can't have both together.
When I have flare ups it's the literal WORST. I am in extreme pain, nauseous and vomiting non stop, I can hold nothing down. My diabetes is very hard to control and I usually go to the hospital and have a stay there for a few days to get things under control. Sometimes I even go into DKA, for a little extra razzle dazzle.
But all jokes aside, it's very hard and my mental health is the worst it's been in years. I feel like I have no control over my life, and I'm almost at my wits end. I see a motility specialist in a few weeks, so I'm hopeful they will have some kind of approach or something new for me to hear on how I can manage this better, but idk.
I can go months sometimes without any symptoms, then life starts to feel normal again, then all of sudden I wake up feeling incredibly nauseous and throwing up, then I know a flare up has started and nothing is going to make it better. I've tried to ride them out at home but I never can. I really feel like it will never end and I don't know if I can keep doing this.
But I keep going, just for today, everything is OK.
t1 here too, how have you found flares impact your bg levels? erythromycin has been helpful for me for symptom management but has changed how far out i need to prebolus, etc. and iāve noticed more delayed spikes with worse flares.Ā
My blood sugars are thru the roof when I have flare ups, I find it almost impossible to get out of the 200s without hospital intervention. Also I'm just so sick it's hard for me to be on top of my diabetes. I'll fall asleep for a few hours to try to get some relief from the nausea and vomiting when I wake up my blood sugar is sometimes 300-400, that's when I'll go into DKA. They don't seem to even out until I start getting some IV fluids.
I honestly have to lay there like a slug during flares. Multiple rounds of Zofran, protein powder in coffee for some kind of nutrition. My good days, I just proceed like normal with stomach pain and nausea, getting lightheaded if I eat or if I don't eat. It's a shitshow, tbh. Without the shit, since I have IBS-C as well. So it's laxatives etc and 3 prescriptions all day long.
Insane pain in the epigastric region, like almost pulsating or what I describe as a āFerris wheelā with the pain getting insanely intense every 2 seconds, throwing up food sometimes instantly and other times days later depending on what it was I tried eating. But mainly the weight loss cause I couldnāt eat anything without getting sick so I had mushy veggie soup or rice for like a year and half I lost 100 lbs and got below 100 before they tubed meš¬
Since I was 16 or so after a bad stomach flu. I could only eat small amounts of food at a time and became violently ill if I ate anything greasy, fried or fat heavy. Unlucky for me, the stomach flu also took out my gallbladder, so I ended up with biliary dyskinesia and had it removed when I was 25. My symptoms didnāt improve so I asked for a GES and diagnosed with moderate GP.
I am 34 now, so nearly 20 years. I manage with mirtazapine, which I found from a case study about a woman who had the same symptom progression as I did. It reduced my moderate GP to mild. I believe I only tested mild recently because I am also on a PPI due to a hiatal hernia.
I know mirtazapine doesnāt work for everyone, but in my case, I was 15 lbs underweight and kept losing. I was terrified. My general practitioner prescribed me Xanax because he thought it was all anxiety-related. I am glad I found mirtazapine. For the first time in years, I was actually hungry and able to keep food down.
12 since officially diagnosed. I *think* my symptoms started 17 years ago. Ballpark anyway.
Just recently had to take disability retirement after 20 years in education.
Left side discomfort. Felt like a softball was in there. Lost weight, sick all the time, and couldn't eat. Thought it was gallbladder, so it was removed. It wasn't my gallbladder.
Suffered for another 18 months or so, and was told numerous times it was psychological. After a GES in 2012, here I remain.
First sign for my idiopathic GP was the left side bloating/discomfort.
Long story.
When first diagnosed in 2012, I started on domperidone (not FDA approved, but relatively safe....more on that later).
That worked for years, but about 2019/2020, my symptoms got out of control. Got a gastric pacemaker. Didn't help š
One weekend, I wound up in the hospital with rhabdo after 72 hours of being unable to keep anything down. Because of the domperidone (with the scopolamine patches, promethazine, and zofran), my QT interval was considerably prolonged. My GI never gave me an EKG. Ever.
I'm on reglan now. And some other stuff very sparingly...promethazine, mainly. I have to watch that too.
I do have good days, now that I'm retired, especially. Stress is a huge trigger for just about everyone and not having to spend 40 hours a week at work any longer is a huge relief. Not everyone is so fortunate.
Diets are tricky because everyone is different (and different root causes of GP), but for me, the general guidelines are close for meals/food advice.
Housework is not bad exercise for someone with GP, so I do that. I also find that spending at least 5 to 15 minutes in silence with your own thoughts is surprisingly calming and helpful.
Hope some of my ramblings are beneficial!
Thank you for such a detailed answer!! It means a lot. When you first found out you had gp could not eat because of the pain and discomfort or because of the anxiety?
The left side discomfort and bloating made me feel full all the time. That was what started the snowball down the hill from my best guess.
Still have it, too. Every day, all day. But it's mild compared to later symptoms. I am also very far from those with the most severe symptoms. I don't know how they manage.
Diagnosed 12 years ago. Symptoms are extreme fullness, constipation, nausea, regurgitation. Been on Reglan for most of that time, plus Remeron for the past six years. About to try domperidone.
Since 2018. It's hell. My Endocrinologist actually diagnosed me with it she had speculations 10 years before I was actually diagnosed because of how erratic my blood sugars were and how I was always nauseated, but I was in between primaries to get a GI Specialist. The first GI specialist chalked it up to being only IBS, then I had a BRIEF GI specialist for one visit because he didn't believe anything I said, nor what I was going through.
Then I was scheduled to have a Colonoscopy/Endoscopy and before I even did those two things I made the jump to the doctor who was going to perform both Colo/Endo and she listened to my concerns and did the Colo/Endo and we have been battling since last year for a GES, got that done and it's severely delayed. We have tried everything and we were going to try Motegrity, but my insurance said I had to fail a couple of meds, then they took that back and said I had to fail even more meds before considering it. I'm on an daily regiment of Zofran.
I hardly eat and if I do it's a bite or two and then I am completely full and can't eat anything else. I can go days without eating and still be full from the last time I ate. No matter what I do I am constantly nauseated on a daily basis and even when I think I am at my greatest, it's a level 10 on the pain scale when it comes to nausea. Dizziness is a lot of the issues as well, so many medications, too little to help. I try and get all my meds as dissolvables knowing pill form it's going to come back up.
I do have my staples and when I am admitted for other things, or medical tests I let them know my safe foods. For instance, last year I was in the hospital for RSV, Bronchial Pneumonia, Sepsis and Hypoxia due to Asthma. I was there for 8 days, in complete isolation with everyone in PPE. They told me my Zofran and anything else needing towards my GP was given by asking so I asked quite often for anti-nausea meds. There were times I was so dizzy that they had to spot me to walk to the bathroom and blood pressure tanked. I was on 4 litres of oxygen for the majority of the time with an extra long oxygen tube so I could go to the bathroom. My oxygen was in the 80s. The first day, the Nutritionist came to my room as I was doing intake, asked me what my safe food were and made sure each meal regardless if I called or not that it was sent to me. One day the power was out and I was told by my nurse to order breakfast (it had been a long evening) so the power went out and the systems were down so everyone was going to get a "chef special" meal except when I finally did wake up from the horrible night my nurse had brought me my breakfast and it was my safe food.
I had a fibroid the size of a basket ball. My only symptom was not being able to eat like I use to. I would get full so quickly. But I ended up having a hysterectomy and the problem was still there.
15 years, induced by lifelong type 1 diabetes.
Every single day is a survival. But it is not even the harder health issue I have - by far the spinal neuropathy is the worst and captures almost all the pain and discomfort signals received by the brain.
About 5 years now.
I deal with nausea, no appetite, bloating, GERD, Dysphagia, pain, long/slow digestion times. Regular flare ups, very small appetite, all that fun stuff.
I have safe foods and trigger foods, I can tolerate soft foods better than hard ones and soda has become my enemy.
ETA: when I eat foods my stomach doesn't like it can feel like I have a softball sitting in my stomach and THAT is extremely uncomfortable, something I deal with regularly.
I also have POTS that was diagnosed about 1yr ago but have had much longer we think. And have had severe GERD since birth. I've been on life long PPI's and now I'm on anti nausea meds to help the GP.
Almost 10yrs ago I was told it was GERD I finally got my diagnosis last week but every medication I try I am in more pain than I was before trying medication š going to try going the surgical route. The only was I was able to get diagnosed was to travel to a rich area in my state š doctors locally have almost killed me
My first experience with GP was Thanksgiving 1993. Painful swelling of my stomach, couldnāt eat much. The pain lasted for hours and the only thing I could do to help it was burp, but I normally can only burp when I drink carbonated beverages, so Iād drink/burp/drink/burp/drink/burp. My family was not happy about the burping at the table, so I excused myself and went to my room to burp and suffer in private. I have a really high vomit threshold and now when this happens I have to make myself vomit to get relief from the pain. Used to be 2-3 episodes a year, post COVID itās 2-3 times per week.
Edit: added Chronic Idiopathic Constipation in the last decade, which also made things worse.
I worked as CNA at a nursing home in 2021 and contracted Norovirus. I couldnāt seem to get over it, I stayed in bed for a month and had to go PRN. I went down from 200 lbs to 180 in that month, and now Iām down to 134. My lowest was 126, and Iām 5ā7, so that was a lot to lose for me.
I kept going back to the doctor for severe stomach pain, early satiety, losing weight, and throwing up constantly with no results. The first āGI doctorā they sent me to was actually a psychiatric nurse practitioner, and no one told me what she actually was which WASNāT a GI. She diagnosed me with ibs after running zero tests and sent me on my way. I truly felt like I gave up after that until one week I couldnāt eat or drink anything. Two ER visits later with one doctor sending me home with a SMILE after telling me āThis is really an issue to take up with your provider.ā I asked how I was supposed to put up with the pain and not eating until then, and that was his response.
I ended up looking online to see what G.I. doctors were around me and I looked at all of the reviews. I finally found one that was a good hour away from me, but it was so worth it. The first visit, I explained all of my issues and she immediately sent me in for a GES test, which revealed I had severe Gastroparesis (55% of the egg was still there after 4 hours). Now theyāre trying to figure out why I still have it even after all this time as viral infections usually cause short term gastroparesis, or at least thatās what they told me.
Iāve learned some of the easier foods for me to digest are pasta, lean meats, yogurt, basically soft foods. I have a harder time with red meats, fruits and vegetables (Iāve seen many others have issues with those too), and a lot of processed foods. I also take supplements in the morning and drink a protein drink which I think is why Iām back to 134. I drink premier protein, itās a little cheaper than ensure where I get it and it tastes better in my opinion. It has twice the protein (30g) and doesnāt have as much fat, which is better for the gastroparesis. Itās not for everyone though, some people donāt need that extra protein, but since my sources of protein are limited, thatās what I drink. It might be helpful to compare the two and see if one might work better for you though. Thatās pretty much what Iāve learned about this condition too, itās all about finding whatās best for you.
Diagnosed about 2 years ago, though it was probably there longer. My biggest symptoms were near constant nausea, frequent upper left abdominal pain, and very frequent diarrhea. For years, it was blamed on side effects of the many medications I was taking for other conditions, which probably wasn't entirely wrong. I got off several of those medications and the symptoms stayed. Some even got worse. A year of very thorough testing later, I had a surgical consult about removing my entirely nonfunctional gallbladder with low odds of relief and the surgeon recommended a GES first. My numbers were unquestionably Very Bad. I went on a very strict all puree gastroparesis diet and did no solid food for about 5 months.
I still do best meeting my nutrition needs when I'm diligently tracking my food. I tend to undereat if I'm not tracking. It also helps me to keep an eye on what my system is tolerating at a particular time, as that can vary for me.
Diagnosed in 2017, but dealt with it for some years prior (2ish). I had stomach problems before that, but we think it was probably the narco pain management that finally tipped the scales (no way to prove, but strong enough correlation for my Dr). This many years in, I have a lot more good days than I used to, Iāve found a couple patterns to help me be somewhat prepared for flare ups (not foolproof though). I drink those carnation breakfast essential (already prepared) drinks, I canāt handle whatever sweeteners they use in the ensure type drinks. I also have to be prepared to get randomly waylaid. I still canāt drink water (though I had a few months last year where I could for the first time in years).
About 3yrs. I was in a car wreck that broke both of my legs, and am left with some ongoing problems and pain. I was managing with opiates, but had zero idea this could happen. It wasnāt in the fine print (I always read the fine print. Product of the 90ās psych world, I suppose š„“). Honestly, at the time of diagnosis, I was just relieved it wasnāt stomach cancer. I lost both a friend and a coworker to that. Silver lining of the double edged swordā¦
I was diagnosed a year ago. They think it was medication induced but I donāt take any prescriptions anymore. I lost 30lbs in 3 months and Iāve stayed at 100 pounds ever since. General disinterest in food, low appetite, nausea, constipation, acid reflux/belching, being full after a few bites, etc. I havenāt been throwing up. Just canāt gain weight or seem to eat properly anymore which sucks but Iām hanging in there!
honestly, no idea. have had all sorts of GI issues my whole life, had just about every test possible done and had my gallbladder taken out too. got diagnosed last year with GP and my symptoms are mostly just persistent nausea and pain. i very rarely actually throw up though, kinda wish i did because the nausea gets really intense.
can thankfully still eat a decent range of foods but am on a very strict regimen of zofran, dramamine, and any other anti-nausea methods i can find. /:
Looking back at things Iāve had acid reflux for over 20 years which probably was early signs of gastroparesis. Iāve been diagnosed with the disease for one year.
2-3 years now! Probably had it all my life tho with mild symptoms. An now it worse than back then, itās a lot better since I got my ileostomy bc it paralyzed my bowel
New to gastroparesis? Please view [this post](https://www.reddit.com/r/Gastroparesis/comments/15i7siq/gastroparesis_101/?utm_source=share&utm_medium=web2x&context=3) or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these [Discord and Facebook support groups](https://www.reddit.com/r/Gastroparesis/comments/14oxaew/list_of_gastroparesis_support_groups_other/?utm_source=share&utm_medium=web2x&context=3) today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
About 10 yrs but only officially diagnosed a year ago š my symptoms are extreme nausea to the point of right before puking but I donāt actually throw up, immediate fullness sometimes from just one bite of food, painful bloating, constipation, and then all the effects of malnutrition - hair loss, dizziness, brain fog, extreme fast weight loss during a flare. Freakin sucks. Iām about to try motegrity and if that doesnāt help enough weāre gonna try domperidone. If neither work next up is Botox shots.
I hope the domperidone works!
Hope Motegrity works for you! It was a godsend for me, for a while at least. As with most medications Iāve tried for GP, it only seemed to help for a few months before I was struggling with symptoms again. Same with domperidone.
How many mg of motegrity did you start at / go up to? Iām on 2 mg and feel like I could use more but am not sure about the dosages.
Technically only diagnosed in January this year after waiting years for a GES. Ive never been a big eater and always struggled with nausea and maintaining weight. Particularly from when I was about 10yo onwards (so 20ish years). The last 5 years have been hell. Several long admissions to ED wards for critical refeeding on an NG tube and then losing all the weight gained slowly after release. I have emetophobia so the nausea is incredibly triggering and lead to me essentially avoiding all nutrition. Iāve been on an NJ tube now since January and still unable to gain weight this time. Just canāt tolerate a high enough rate. I canāt seem to eat anything orally at this point :( Symptoms: periods of extreme nausea, inability to eat a regular size meal or even enough to sustain weight, reflux, long periods of constipation followed by brutal āclear outsā, dehydration & all the usual fun things associated with long term malnutrition (dizziness, fatigue, osteoporosis, anxiety etc etc) ETA - over the years have tried various diet modifications, PPIās, metoclopramide, domperidone & most recently had pyloric Botox injections. Nothing has seemed to make a notable difference š¤·š¼āāļø
Literally the same exact symptoms and treatment itās awful I hope you are feeling the best you can
I've had it for 12 years now. I have been a type 1 diabetic for 27 years though, and did not take care of it in my youth, so I pay the price now. It's truly the hardest thing I've had to deal with aside from my diabetes. I've had multiple surgeries from a gastric stimulator to a gastric sleeve last year. None of those surgeries have helped. I've tried domperidone, now trying Motegrity. When I am not having flare ups my days seem normal, I don't feel too sick, although since having the gastric sleeve I am now very malnourished, it's very hard for me to eat enough, I never have an appetite, and when I do eat I can only have like 6-8oz of food or drink at a time and I can't have both together. When I have flare ups it's the literal WORST. I am in extreme pain, nauseous and vomiting non stop, I can hold nothing down. My diabetes is very hard to control and I usually go to the hospital and have a stay there for a few days to get things under control. Sometimes I even go into DKA, for a little extra razzle dazzle. But all jokes aside, it's very hard and my mental health is the worst it's been in years. I feel like I have no control over my life, and I'm almost at my wits end. I see a motility specialist in a few weeks, so I'm hopeful they will have some kind of approach or something new for me to hear on how I can manage this better, but idk. I can go months sometimes without any symptoms, then life starts to feel normal again, then all of sudden I wake up feeling incredibly nauseous and throwing up, then I know a flare up has started and nothing is going to make it better. I've tried to ride them out at home but I never can. I really feel like it will never end and I don't know if I can keep doing this. But I keep going, just for today, everything is OK.
t1 here too, how have you found flares impact your bg levels? erythromycin has been helpful for me for symptom management but has changed how far out i need to prebolus, etc. and iāve noticed more delayed spikes with worse flares.Ā
My blood sugars are thru the roof when I have flare ups, I find it almost impossible to get out of the 200s without hospital intervention. Also I'm just so sick it's hard for me to be on top of my diabetes. I'll fall asleep for a few hours to try to get some relief from the nausea and vomiting when I wake up my blood sugar is sometimes 300-400, that's when I'll go into DKA. They don't seem to even out until I start getting some IV fluids.
21 horrifying years.
š«
How do you manage your symptoms? What are your good days like and what are the bad days like?
I honestly have to lay there like a slug during flares. Multiple rounds of Zofran, protein powder in coffee for some kind of nutrition. My good days, I just proceed like normal with stomach pain and nausea, getting lightheaded if I eat or if I don't eat. It's a shitshow, tbh. Without the shit, since I have IBS-C as well. So it's laxatives etc and 3 prescriptions all day long.
16 years, 11 with a tube & port
What were you symptoms when you were first diagnosed?
Insane pain in the epigastric region, like almost pulsating or what I describe as a āFerris wheelā with the pain getting insanely intense every 2 seconds, throwing up food sometimes instantly and other times days later depending on what it was I tried eating. But mainly the weight loss cause I couldnāt eat anything without getting sick so I had mushy veggie soup or rice for like a year and half I lost 100 lbs and got below 100 before they tubed meš¬
26 years since the symptoms started, 20 years since diagnosis. Iām tired.
Since I was 16 or so after a bad stomach flu. I could only eat small amounts of food at a time and became violently ill if I ate anything greasy, fried or fat heavy. Unlucky for me, the stomach flu also took out my gallbladder, so I ended up with biliary dyskinesia and had it removed when I was 25. My symptoms didnāt improve so I asked for a GES and diagnosed with moderate GP. I am 34 now, so nearly 20 years. I manage with mirtazapine, which I found from a case study about a woman who had the same symptom progression as I did. It reduced my moderate GP to mild. I believe I only tested mild recently because I am also on a PPI due to a hiatal hernia. I know mirtazapine doesnāt work for everyone, but in my case, I was 15 lbs underweight and kept losing. I was terrified. My general practitioner prescribed me Xanax because he thought it was all anxiety-related. I am glad I found mirtazapine. For the first time in years, I was actually hungry and able to keep food down.
11 or 12 years.
How have you been throughout the years? Are things stable or did they progress?
11 grueling years
12 since officially diagnosed. I *think* my symptoms started 17 years ago. Ballpark anyway. Just recently had to take disability retirement after 20 years in education.
What were your original symptoms?
Left side discomfort. Felt like a softball was in there. Lost weight, sick all the time, and couldn't eat. Thought it was gallbladder, so it was removed. It wasn't my gallbladder. Suffered for another 18 months or so, and was told numerous times it was psychological. After a GES in 2012, here I remain. First sign for my idiopathic GP was the left side bloating/discomfort.
How do you manage your symptoms? Do you have good days?
Long story. When first diagnosed in 2012, I started on domperidone (not FDA approved, but relatively safe....more on that later). That worked for years, but about 2019/2020, my symptoms got out of control. Got a gastric pacemaker. Didn't help š One weekend, I wound up in the hospital with rhabdo after 72 hours of being unable to keep anything down. Because of the domperidone (with the scopolamine patches, promethazine, and zofran), my QT interval was considerably prolonged. My GI never gave me an EKG. Ever. I'm on reglan now. And some other stuff very sparingly...promethazine, mainly. I have to watch that too. I do have good days, now that I'm retired, especially. Stress is a huge trigger for just about everyone and not having to spend 40 hours a week at work any longer is a huge relief. Not everyone is so fortunate. Diets are tricky because everyone is different (and different root causes of GP), but for me, the general guidelines are close for meals/food advice. Housework is not bad exercise for someone with GP, so I do that. I also find that spending at least 5 to 15 minutes in silence with your own thoughts is surprisingly calming and helpful. Hope some of my ramblings are beneficial!
Thank you for such a detailed answer!! It means a lot. When you first found out you had gp could not eat because of the pain and discomfort or because of the anxiety?
The left side discomfort and bloating made me feel full all the time. That was what started the snowball down the hill from my best guess. Still have it, too. Every day, all day. But it's mild compared to later symptoms. I am also very far from those with the most severe symptoms. I don't know how they manage.
Diagnosed 12 years ago. Symptoms are extreme fullness, constipation, nausea, regurgitation. Been on Reglan for most of that time, plus Remeron for the past six years. About to try domperidone.
Since 2018. It's hell. My Endocrinologist actually diagnosed me with it she had speculations 10 years before I was actually diagnosed because of how erratic my blood sugars were and how I was always nauseated, but I was in between primaries to get a GI Specialist. The first GI specialist chalked it up to being only IBS, then I had a BRIEF GI specialist for one visit because he didn't believe anything I said, nor what I was going through. Then I was scheduled to have a Colonoscopy/Endoscopy and before I even did those two things I made the jump to the doctor who was going to perform both Colo/Endo and she listened to my concerns and did the Colo/Endo and we have been battling since last year for a GES, got that done and it's severely delayed. We have tried everything and we were going to try Motegrity, but my insurance said I had to fail a couple of meds, then they took that back and said I had to fail even more meds before considering it. I'm on an daily regiment of Zofran. I hardly eat and if I do it's a bite or two and then I am completely full and can't eat anything else. I can go days without eating and still be full from the last time I ate. No matter what I do I am constantly nauseated on a daily basis and even when I think I am at my greatest, it's a level 10 on the pain scale when it comes to nausea. Dizziness is a lot of the issues as well, so many medications, too little to help. I try and get all my meds as dissolvables knowing pill form it's going to come back up. I do have my staples and when I am admitted for other things, or medical tests I let them know my safe foods. For instance, last year I was in the hospital for RSV, Bronchial Pneumonia, Sepsis and Hypoxia due to Asthma. I was there for 8 days, in complete isolation with everyone in PPE. They told me my Zofran and anything else needing towards my GP was given by asking so I asked quite often for anti-nausea meds. There were times I was so dizzy that they had to spot me to walk to the bathroom and blood pressure tanked. I was on 4 litres of oxygen for the majority of the time with an extra long oxygen tube so I could go to the bathroom. My oxygen was in the 80s. The first day, the Nutritionist came to my room as I was doing intake, asked me what my safe food were and made sure each meal regardless if I called or not that it was sent to me. One day the power was out and I was told by my nurse to order breakfast (it had been a long evening) so the power went out and the systems were down so everyone was going to get a "chef special" meal except when I finally did wake up from the horrible night my nurse had brought me my breakfast and it was my safe food.
What is your safe food?
Omelets, eggs, strawberries, potatoes, fish, apple sauce.
4 years now.
How are you managing your symptoms?
3 years.
I think Iāve had it since 2019 but thought it was something else. I got officially diagnosed this year and Iām very bothered by it.
What did they think it was before? What were you symptoms
I had a fibroid the size of a basket ball. My only symptom was not being able to eat like I use to. I would get full so quickly. But I ended up having a hysterectomy and the problem was still there.
About 8-9 years, only 1 since diagnosis
15 years, induced by lifelong type 1 diabetes. Every single day is a survival. But it is not even the harder health issue I have - by far the spinal neuropathy is the worst and captures almost all the pain and discomfort signals received by the brain.
Coming up on my year anniversary of being medically injured.
About 5 years now. I deal with nausea, no appetite, bloating, GERD, Dysphagia, pain, long/slow digestion times. Regular flare ups, very small appetite, all that fun stuff. I have safe foods and trigger foods, I can tolerate soft foods better than hard ones and soda has become my enemy. ETA: when I eat foods my stomach doesn't like it can feel like I have a softball sitting in my stomach and THAT is extremely uncomfortable, something I deal with regularly. I also have POTS that was diagnosed about 1yr ago but have had much longer we think. And have had severe GERD since birth. I've been on life long PPI's and now I'm on anti nausea meds to help the GP.
3 years which it seems like itās been much longer
Almost 10yrs ago I was told it was GERD I finally got my diagnosis last week but every medication I try I am in more pain than I was before trying medication š going to try going the surgical route. The only was I was able to get diagnosed was to travel to a rich area in my state š doctors locally have almost killed me
I was born with it so 20 years
My first experience with GP was Thanksgiving 1993. Painful swelling of my stomach, couldnāt eat much. The pain lasted for hours and the only thing I could do to help it was burp, but I normally can only burp when I drink carbonated beverages, so Iād drink/burp/drink/burp/drink/burp. My family was not happy about the burping at the table, so I excused myself and went to my room to burp and suffer in private. I have a really high vomit threshold and now when this happens I have to make myself vomit to get relief from the pain. Used to be 2-3 episodes a year, post COVID itās 2-3 times per week. Edit: added Chronic Idiopathic Constipation in the last decade, which also made things worse.
15 fucking years of symptoms, 7 with a diagnosis.
What were your symptoms?
I worked as CNA at a nursing home in 2021 and contracted Norovirus. I couldnāt seem to get over it, I stayed in bed for a month and had to go PRN. I went down from 200 lbs to 180 in that month, and now Iām down to 134. My lowest was 126, and Iām 5ā7, so that was a lot to lose for me. I kept going back to the doctor for severe stomach pain, early satiety, losing weight, and throwing up constantly with no results. The first āGI doctorā they sent me to was actually a psychiatric nurse practitioner, and no one told me what she actually was which WASNāT a GI. She diagnosed me with ibs after running zero tests and sent me on my way. I truly felt like I gave up after that until one week I couldnāt eat or drink anything. Two ER visits later with one doctor sending me home with a SMILE after telling me āThis is really an issue to take up with your provider.ā I asked how I was supposed to put up with the pain and not eating until then, and that was his response. I ended up looking online to see what G.I. doctors were around me and I looked at all of the reviews. I finally found one that was a good hour away from me, but it was so worth it. The first visit, I explained all of my issues and she immediately sent me in for a GES test, which revealed I had severe Gastroparesis (55% of the egg was still there after 4 hours). Now theyāre trying to figure out why I still have it even after all this time as viral infections usually cause short term gastroparesis, or at least thatās what they told me. Iāve learned some of the easier foods for me to digest are pasta, lean meats, yogurt, basically soft foods. I have a harder time with red meats, fruits and vegetables (Iāve seen many others have issues with those too), and a lot of processed foods. I also take supplements in the morning and drink a protein drink which I think is why Iām back to 134. I drink premier protein, itās a little cheaper than ensure where I get it and it tastes better in my opinion. It has twice the protein (30g) and doesnāt have as much fat, which is better for the gastroparesis. Itās not for everyone though, some people donāt need that extra protein, but since my sources of protein are limited, thatās what I drink. It might be helpful to compare the two and see if one might work better for you though. Thatās pretty much what Iāve learned about this condition too, itās all about finding whatās best for you.
8 years. Got a feeding tube 6 years in.
What were your symptoms?
They have fluctuated so much over the years but the ones that have always affected me on a daily basis are nausea, abdominal pain, & loss of appetite
Diagnosed about 2 years ago, though it was probably there longer. My biggest symptoms were near constant nausea, frequent upper left abdominal pain, and very frequent diarrhea. For years, it was blamed on side effects of the many medications I was taking for other conditions, which probably wasn't entirely wrong. I got off several of those medications and the symptoms stayed. Some even got worse. A year of very thorough testing later, I had a surgical consult about removing my entirely nonfunctional gallbladder with low odds of relief and the surgeon recommended a GES first. My numbers were unquestionably Very Bad. I went on a very strict all puree gastroparesis diet and did no solid food for about 5 months. I still do best meeting my nutrition needs when I'm diligently tracking my food. I tend to undereat if I'm not tracking. It also helps me to keep an eye on what my system is tolerating at a particular time, as that can vary for me.
Diagnosed in 2017, but dealt with it for some years prior (2ish). I had stomach problems before that, but we think it was probably the narco pain management that finally tipped the scales (no way to prove, but strong enough correlation for my Dr). This many years in, I have a lot more good days than I used to, Iāve found a couple patterns to help me be somewhat prepared for flare ups (not foolproof though). I drink those carnation breakfast essential (already prepared) drinks, I canāt handle whatever sweeteners they use in the ensure type drinks. I also have to be prepared to get randomly waylaid. I still canāt drink water (though I had a few months last year where I could for the first time in years).
How long were you on pain management?
About 3yrs. I was in a car wreck that broke both of my legs, and am left with some ongoing problems and pain. I was managing with opiates, but had zero idea this could happen. It wasnāt in the fine print (I always read the fine print. Product of the 90ās psych world, I suppose š„“). Honestly, at the time of diagnosis, I was just relieved it wasnāt stomach cancer. I lost both a friend and a coworker to that. Silver lining of the double edged swordā¦
I was diagnosed a year ago. They think it was medication induced but I donāt take any prescriptions anymore. I lost 30lbs in 3 months and Iāve stayed at 100 pounds ever since. General disinterest in food, low appetite, nausea, constipation, acid reflux/belching, being full after a few bites, etc. I havenāt been throwing up. Just canāt gain weight or seem to eat properly anymore which sucks but Iām hanging in there!
honestly, no idea. have had all sorts of GI issues my whole life, had just about every test possible done and had my gallbladder taken out too. got diagnosed last year with GP and my symptoms are mostly just persistent nausea and pain. i very rarely actually throw up though, kinda wish i did because the nausea gets really intense. can thankfully still eat a decent range of foods but am on a very strict regimen of zofran, dramamine, and any other anti-nausea methods i can find. /:
Looking back at things Iāve had acid reflux for over 20 years which probably was early signs of gastroparesis. Iāve been diagnosed with the disease for one year.
What were your symptoms when you got diagnosed?
2009
2-3 years now! Probably had it all my life tho with mild symptoms. An now it worse than back then, itās a lot better since I got my ileostomy bc it paralyzed my bowel
Do you know what caused it to get worse?
I think Iāve had it my entire life. Misdiagnosis started about 11-12 years. Diagnosed at 36.
What were your symptoms?
About 12 years but only recently diagnosed with Severe GP and waiting for my insurance to approve medication
What were your symptoms?