Will I remain a mystery? Painful stomach, puking, weight loss

Posted by hyrulewarrior @hyrulewarrior, Jul 1, 2024

Hi, I’m not sure where to even start, my life has been absolute hell. I’ve had stomach issues since I was a kid but it was simple aches and constipation that was treated by a doctor back then. I never thought it would become this but here we are, around 4 years ago now I got VERY sick with COVID and since then I’ve been in and out of the ER/Hospital. I would have pain in my entire stomach area that felt like something was dying inside of me but that’s as well as I could explain it. I would be puking non stop, unable to get anything I needed down especially my meds I need. My potassium and such was plummeting and things get scary and this is becoming more frequent. I’m only 20 almost 21 and I haven’t been able to do much of anything. I’ve lost over 100 pounds, I’m weak and can hardly eat once a day now from pain/constipation/fear of puking. My GI doctor seems to not care, he tried to not even tell me that my gastroparesis was confirmed. I am not being treated for anything besides GERD thanks to my amazing PCP, but she can only do so much. I guess overall, I feel so stranded and alone, I’m treated like they have no idea what’s wrong but im constantly in the hospital, I can’t keep a job or have a proper life. It’s becoming so hard to stay alive and postive, Does anyone think this could be something else or just gastro not being treated all these years? I’ve done so many tests I really am not sure what all they were besides upper endoscopy and colonoscopy and basic blood/pee tests

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Profile picture for rinaa @rinaa

I have lost around 22 lbs in several months without doing anything. I weighed 208 back in may of last year and now weigh 186 in march. I would normally be happy to lose weight, but right now my concern is I haven't been trying to lose weight. My weight has just been steadily decreasing without me trying I haven't changed anything in my lifestyle or diet, and I am currently almost always sedentary. This concerns me because my weight has been stable roughly around 200 for years. I went to the community clinic near me because in feb I had blood in my stool that looked like clots. I haven't seen any blood since and had no prior experience with blood in my stool before. I did a hemoccult of one sample it came back negative. I have had to use aleve to treat my arthritis pain and I had taken two aleve in seven-hour window hours prior to seeing the blood in stool so that is the only thing I could chalk it up to being the cause, not completely sure it was though. I have taken nsaids for years without issue but just in case since then I stopped taking them. I have severe gerd,possible ibs have all the symptoms(every few months painful stomach cramps then rapid urge to go to the bathroom lasts 30 minutes then fine have had this for years sometimes feel sick from the vagus nerve usually certain foods trigger this like my gerd) but haven't gotten diagnosed, and psoriatic arthritis. The only medication I am on is nexium over the counter. I have had severe gerd since I was newborn stomach acid regurgitates into my month often certain foods trigger it more. I don't have health insurance I am only able to go to a community clinic right now and they only cover general care. My weight hasn’t been stable since before may and it's decreasing slowly. I should add I have had sharp pain that lasts for a few seconds on the right flank slightly towards the back only happened a few times in the last couple of months but have had it happen twice the past two day. Also been dealing with nausea. I am just not sure where to go with this I am concerned.

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Have you gone to an er? By law they have to treat you with or without insurance. Have you had ct or cta of your abdomen? They also can do more extensive bloodwork in er.

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Profile picture for rinaa @rinaa

I have lost around 22 lbs in several months without doing anything. I weighed 208 back in may of last year and now weigh 186 in march. I would normally be happy to lose weight, but right now my concern is I haven't been trying to lose weight. My weight has just been steadily decreasing without me trying I haven't changed anything in my lifestyle or diet, and I am currently almost always sedentary. This concerns me because my weight has been stable roughly around 200 for years. I went to the community clinic near me because in feb I had blood in my stool that looked like clots. I haven't seen any blood since and had no prior experience with blood in my stool before. I did a hemoccult of one sample it came back negative. I have had to use aleve to treat my arthritis pain and I had taken two aleve in seven-hour window hours prior to seeing the blood in stool so that is the only thing I could chalk it up to being the cause, not completely sure it was though. I have taken nsaids for years without issue but just in case since then I stopped taking them. I have severe gerd,possible ibs have all the symptoms(every few months painful stomach cramps then rapid urge to go to the bathroom lasts 30 minutes then fine have had this for years sometimes feel sick from the vagus nerve usually certain foods trigger this like my gerd) but haven't gotten diagnosed, and psoriatic arthritis. The only medication I am on is nexium over the counter. I have had severe gerd since I was newborn stomach acid regurgitates into my month often certain foods trigger it more. I don't have health insurance I am only able to go to a community clinic right now and they only cover general care. My weight hasn’t been stable since before may and it's decreasing slowly. I should add I have had sharp pain that lasts for a few seconds on the right flank slightly towards the back only happened a few times in the last couple of months but have had it happen twice the past two day. Also been dealing with nausea. I am just not sure where to go with this I am concerned.

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Definitely go to the ER! They will help you get the bottom of this and they do have to treat you. I hope it is nothing to worry about, but better to find out early if it is serious.

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Profile picture for rinaa @rinaa

I have lost around 22 lbs in several months without doing anything. I weighed 208 back in may of last year and now weigh 186 in march. I would normally be happy to lose weight, but right now my concern is I haven't been trying to lose weight. My weight has just been steadily decreasing without me trying I haven't changed anything in my lifestyle or diet, and I am currently almost always sedentary. This concerns me because my weight has been stable roughly around 200 for years. I went to the community clinic near me because in feb I had blood in my stool that looked like clots. I haven't seen any blood since and had no prior experience with blood in my stool before. I did a hemoccult of one sample it came back negative. I have had to use aleve to treat my arthritis pain and I had taken two aleve in seven-hour window hours prior to seeing the blood in stool so that is the only thing I could chalk it up to being the cause, not completely sure it was though. I have taken nsaids for years without issue but just in case since then I stopped taking them. I have severe gerd,possible ibs have all the symptoms(every few months painful stomach cramps then rapid urge to go to the bathroom lasts 30 minutes then fine have had this for years sometimes feel sick from the vagus nerve usually certain foods trigger this like my gerd) but haven't gotten diagnosed, and psoriatic arthritis. The only medication I am on is nexium over the counter. I have had severe gerd since I was newborn stomach acid regurgitates into my month often certain foods trigger it more. I don't have health insurance I am only able to go to a community clinic right now and they only cover general care. My weight hasn’t been stable since before may and it's decreasing slowly. I should add I have had sharp pain that lasts for a few seconds on the right flank slightly towards the back only happened a few times in the last couple of months but have had it happen twice the past two day. Also been dealing with nausea. I am just not sure where to go with this I am concerned.

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Could be malabsorption or EPI. Definitely go see a gastroenterologist and get a full GI workup.

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Profile picture for rinaa @rinaa

I have lost around 22 lbs in several months without doing anything. I weighed 208 back in may of last year and now weigh 186 in march. I would normally be happy to lose weight, but right now my concern is I haven't been trying to lose weight. My weight has just been steadily decreasing without me trying I haven't changed anything in my lifestyle or diet, and I am currently almost always sedentary. This concerns me because my weight has been stable roughly around 200 for years. I went to the community clinic near me because in feb I had blood in my stool that looked like clots. I haven't seen any blood since and had no prior experience with blood in my stool before. I did a hemoccult of one sample it came back negative. I have had to use aleve to treat my arthritis pain and I had taken two aleve in seven-hour window hours prior to seeing the blood in stool so that is the only thing I could chalk it up to being the cause, not completely sure it was though. I have taken nsaids for years without issue but just in case since then I stopped taking them. I have severe gerd,possible ibs have all the symptoms(every few months painful stomach cramps then rapid urge to go to the bathroom lasts 30 minutes then fine have had this for years sometimes feel sick from the vagus nerve usually certain foods trigger this like my gerd) but haven't gotten diagnosed, and psoriatic arthritis. The only medication I am on is nexium over the counter. I have had severe gerd since I was newborn stomach acid regurgitates into my month often certain foods trigger it more. I don't have health insurance I am only able to go to a community clinic right now and they only cover general care. My weight hasn’t been stable since before may and it's decreasing slowly. I should add I have had sharp pain that lasts for a few seconds on the right flank slightly towards the back only happened a few times in the last couple of months but have had it happen twice the past two day. Also been dealing with nausea. I am just not sure where to go with this I am concerned.

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I agree with the others that have commented here including the one that said to go to the ER if you feel it necessary. There is something wrong and you are right to be concerned. You should check into your options with regards to having no medical insurance. I'm sure there must be something available to you.

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Profile picture for rinaa @rinaa

I have lost around 22 lbs in several months without doing anything. I weighed 208 back in may of last year and now weigh 186 in march. I would normally be happy to lose weight, but right now my concern is I haven't been trying to lose weight. My weight has just been steadily decreasing without me trying I haven't changed anything in my lifestyle or diet, and I am currently almost always sedentary. This concerns me because my weight has been stable roughly around 200 for years. I went to the community clinic near me because in feb I had blood in my stool that looked like clots. I haven't seen any blood since and had no prior experience with blood in my stool before. I did a hemoccult of one sample it came back negative. I have had to use aleve to treat my arthritis pain and I had taken two aleve in seven-hour window hours prior to seeing the blood in stool so that is the only thing I could chalk it up to being the cause, not completely sure it was though. I have taken nsaids for years without issue but just in case since then I stopped taking them. I have severe gerd,possible ibs have all the symptoms(every few months painful stomach cramps then rapid urge to go to the bathroom lasts 30 minutes then fine have had this for years sometimes feel sick from the vagus nerve usually certain foods trigger this like my gerd) but haven't gotten diagnosed, and psoriatic arthritis. The only medication I am on is nexium over the counter. I have had severe gerd since I was newborn stomach acid regurgitates into my month often certain foods trigger it more. I don't have health insurance I am only able to go to a community clinic right now and they only cover general care. My weight hasn’t been stable since before may and it's decreasing slowly. I should add I have had sharp pain that lasts for a few seconds on the right flank slightly towards the back only happened a few times in the last couple of months but have had it happen twice the past two day. Also been dealing with nausea. I am just not sure where to go with this I am concerned.

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I can relate. I too suffer from weight loss and it is so frustrating. They think you not eating enough 'INTENTIONALLY'. This couldn't be further from the truth. However, I don't believe my situation is as dire as yours. I'm suffering because of BAM after gallbladder removal due to gallstones. Best of luck to you!

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Profile picture for graceym1 @graceym1

Have you gone to an er? By law they have to treat you with or without insurance. Have you had ct or cta of your abdomen? They also can do more extensive bloodwork in er.

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I haven't gone yet, and I haven't had a ct,cta or anything done of my abdomen that is one thing I would like done.

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Profile picture for rashida @rashida

@rinaa could you see another doctor? Your symptoms - especially the unexplained weight loss - sound serious.

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I wish I could, but since I have no health insurance, I am only able to see the community clinic. I know I really need and would like to see a gastroenterologist.

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Profile picture for isadora2021 @isadora2021

@hyrulewarrior - I’ve been reading up about Gastroparesis and it sounds exactly what your symptoms are. Mayo has material but I’m not allowed to post links here. It seems it’s not always possible to identify a cause and it also seems not to be curable but manageable. I am totally shocked your GI Doctor isn’t working with you to treat it as there seem to be a number of treatment options to try. You absolutely need to see your GP and get a second opinion. Please keep us posted.

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@isadora2021
I am very curious as to how you are now. My 21 yo daughter is having the exact same issue. It has affected her quality of life.

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Profile picture for chall7602 @chall7602

@isadora2021
I am very curious as to how you are now. My 21 yo daughter is having the exact same issue. It has affected her quality of life.

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@chall7602 I’m so sorry your daughter’s quality of life has been so badly compromised. I hope she gets palliative care (management of her issues). My oncologist and nurse practitioner have been wonderful and I haven’t needed additional support, so far.

I have been very fortunate. Treatment affects us all in such different ways. I am doing very well after initial debulking surgery including a radical hysterectomy, 6 months of fortnightly cycles of Folfiri and Avastin with the 46 hour take home pump and then HIPEC with cytoreductive surgery including a peritonectomy (the so called “mother of all surgeries”).

I had part of my bowel removed but woke up without a stoma and bag.

I’ve been in remission with close surveillance PET—CT scanning and blood tests. Initially every 3 months (sometimes 2) and recently moved to 6 months.

For quality of life I need to manage what I eat, how much I eat and how often I eat to minimise constipation or diarrhea as well as abdominal pain especially at the resection site. I’ve been so lucky in the quality of life I’ve got. I still get tired and need to manage that. I exercise daily (long walks with my dogs and playtime) and eat nutritiously most of the time. The mental side for me can be tough which is why focussing on the here and now and what I can do and not what I can’t any more (like running long distances) has been so important for me.

Please give your daughter a big hug from me ❤️‍🩹

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Profile picture for isadora2021 @isadora2021

@chall7602 I’m so sorry your daughter’s quality of life has been so badly compromised. I hope she gets palliative care (management of her issues). My oncologist and nurse practitioner have been wonderful and I haven’t needed additional support, so far.

I have been very fortunate. Treatment affects us all in such different ways. I am doing very well after initial debulking surgery including a radical hysterectomy, 6 months of fortnightly cycles of Folfiri and Avastin with the 46 hour take home pump and then HIPEC with cytoreductive surgery including a peritonectomy (the so called “mother of all surgeries”).

I had part of my bowel removed but woke up without a stoma and bag.

I’ve been in remission with close surveillance PET—CT scanning and blood tests. Initially every 3 months (sometimes 2) and recently moved to 6 months.

For quality of life I need to manage what I eat, how much I eat and how often I eat to minimise constipation or diarrhea as well as abdominal pain especially at the resection site. I’ve been so lucky in the quality of life I’ve got. I still get tired and need to manage that. I exercise daily (long walks with my dogs and playtime) and eat nutritiously most of the time. The mental side for me can be tough which is why focussing on the here and now and what I can do and not what I can’t any more (like running long distances) has been so important for me.

Please give your daughter a big hug from me ❤️‍🩹

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@isadora2021
As an oncology nurse myself with an amazing NP I work with, I am so glad you got a diagnosis. But I have to ask how did they finally find this. I work in the medical field and still stuck in the cycle?

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