Horrible abdominal Pain- all tests say I am fine but I am not

Posted by jojo13 @jojo13, Sep 1, 2021

I am new here and hoping you guys can help. I have had horrible abdominal pain for weeks now, once it was so bad I was on the floor crying. It is almost like a burning, gnawing feeling. It is in my abdomen and down by my hip bone- so more pelvic I guess. I am bloated and nauseas most of the time. I wake up with the pain and it can last all day. It ruins my day to day life. I had an endoscopy and a colonoscopy yesterday and both came back fine. I was told to go home and eat better. This morning I woke up in terrible pain and it has not let up all day. I know my body and something else is wrong, not just diet. There are also horrible noises that come from my stomach all day which I have been told is IBS but this pain can not be just IBS. Does anyone have any insight? I am thinking of going to the Mayo Clinic but don't know what tests they would do. Perhaps there are some blood tests I can get done on my own? Any help would be awesome. I just want to feel better again and not like I am crazy. I am a female 41, 5'4 and 127.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I went to my Gastrointestinal doctor and it seems back in October he had asked me to go get a CT with contrast (I am usually good about these things so I have no idea how I didn't do this) due to this finding a few months prior, "Mildly dilated loop of small bowel felt to represent jejunum in the left midabdomen which measures 2.7 cm in maximal diameter." ---this was when I had gone to the hospital because the pain was so bad. Since then I did have a hysterotomy so I am wondering if more adhesions or something formed and caused this to become an issue because at the time the doctor at the hospital was not concerned about it. I am wondering if anyone has had an issue similar? I am going next week to get the CT with contrast and really hope to get answers because while the pain has been better, my "bathroom" habits are not good and as soon as I eat anything my stomach starts with the noises etc. My appetite has also gone down to almost nothing.

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Profile picture for jojo13 @jojo13

I went to my Gastrointestinal doctor and it seems back in October he had asked me to go get a CT with contrast (I am usually good about these things so I have no idea how I didn't do this) due to this finding a few months prior, "Mildly dilated loop of small bowel felt to represent jejunum in the left midabdomen which measures 2.7 cm in maximal diameter." ---this was when I had gone to the hospital because the pain was so bad. Since then I did have a hysterotomy so I am wondering if more adhesions or something formed and caused this to become an issue because at the time the doctor at the hospital was not concerned about it. I am wondering if anyone has had an issue similar? I am going next week to get the CT with contrast and really hope to get answers because while the pain has been better, my "bathroom" habits are not good and as soon as I eat anything my stomach starts with the noises etc. My appetite has also gone down to almost nothing.

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Did you try taking the Carnett test to see if you might have ACNES? (Abdominal cutaneous nerve entrapment syndrome). A doctor in Phoenix has a procedure for this.

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I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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Hello @genise22 and welcome to the Digestive Health support group on Mayo Connect. It certainly sounds like you are having a lot of digestive issues without an understanding of their cause. I can only imagine how frustrating that must be for you. You don't specifically mention your age, but I'm assuming from what you have said that you might still be a teenager. Is that correct?

It sounds as if you have tried many different eating plans but have not found one that solves this problem. I admire how proactive you have been in trying to find an answer to this problem. I would like to invite another mentor to this discussion, @astaingegerdm, who has also had some very hard to diagnose digestive tract issues. Perhaps she can shed some light on your problems.

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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@genise22, I'd like to add my welcome to @hopeful33250's. You mentioned you have seen a variety of different providers and had some tests done as well including Celiac and SIBO. Have you had any other allergy or food tests done to rule out specific foods? Have you found any foods at all that don't trigger this reaction?
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/food-intolerance-or-food-allergy

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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Since you didn't say otherwise, might it be safe to assume that you are okay with your weight? Has all of this led to extreme weight loss or malnutrition?

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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Your case sounds like mine as most low FODMAP foods cause me problems. My staples are trace or zero FODMAP foods.

See attached.

Shared files

My IBS routine 10022023 (My-IBS-routine-10022023.pdf)

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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Have you had any abdominal surgeries including c-section. If so you may have adhesions that causes all of your issues.

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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I feel for you !! I have 6-7 diagnoses.. just saw my 6 th Gastro doctor in 10 years. Even had major testing at Mayo Clinic 2 yrs ago .
I’ve tried and done everything RX , Holistic, Diet wise , Ecery supplement for digestive health , hypno therapy, Acupuncture, Massage Therapy. I deep wet belch over 1000 x a day and half the night. Non stop churning gut . Hate to eat food 🥘, and eat small and healthy. It’s a living nightmare. 10 years of my life gone .
This new Gastro wants to put me on Remeron low dose ( I’ve tried some other antidepressants w/ no luck or bad side effects). This is specific for sleep and helps w/ digestive issues she said .
I’m hesitant to try again as I have such day fatigue as it is and deal w/ symptoms all day , everyday.
I’m going yo try it though .
I’ve had over 20 tests done ☑️ too .
Same diagnosis 7 of them . She said it’s more like functional dysplasia. That the gastritis, GERD , hiatal hernia , diverticulosis , shazki ring , small gastrointestinal polyps etc .. are not causing this . Hummmm I don’t believe that ?
We are at the mercy of these Dr’s
I am seeing a néw Functional medical Dr too and hope he can help me too .
God Bless you as this journey is so hard . I’ll pray 🙏 hard you find someone to help you !

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Profile picture for genise22 @genise22

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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I have IBS and have since birth, but I’ve had horrible experiences with my gut since forever.
There is a book called The Bloated Belly Whisperer by Tamara Duker Freuman. It’s on Amazon for $15.99. It helped me sort out my bloat, some pain and such. There is a test to help determine what plagues you. I kept reading down through my results until I got to the one that fit the best.
I finally felt heard and not alone.
Then I saw my Mayo gastro and she pretty much confirmed what the book said it could be. 🙂
I appreciated the help. Now I have a base and can work from there.

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