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.

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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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Hi, it's amazing that I have had the exact same situation going on since Thanksgiving Day 2018. Been diagnosed with IBSC. All kinds of tests, scans, colonoscopy, endoscopy... You name it. My issues are slow digestion, constipation, pain, and bloating. Been on 290 much. Linzess; doesn't work, Amitiza; doesn't work, so I alternate my laxatives. M.O.M. one day, Magnesium Citrate, Dulcolax tablets and suppositories. But it takes twice as long to work ( up to 16 hours), and I take double or triple the recommended dose. It's affecting my life and mental well-being.

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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 Hi! Teresa is correct saying I have had some tough to diagnose GI issues.
I’m sorry you start having them so young.
Did you say that you have been tested for gallbladder disease? That was my first problem. I didn’t even suspect that- I thought I had gastritis. Gallbladder is gone but I still have to be very careful eating fats.
The majority of problems started 15 years ago. First collagenous colitis- autoimmune never ending diarrhea. Disappeared after immune suppressant treatment.
I then started to have severe pain, most often after eating.
I had realized along the way that I had IBS-C. Bloating has been severe as well as cramps and scattered pain.
I was seen and tested at Mayo for a few years before 2 rare diagnoses were found.
One was MALS- Median Arcuate Ligament Syndrome.
There is a ligament originating on the diaphragm that puts pressure on the celiac artery. The celiac artery supplies blood to many of the abdominal organs. It typically shows itself as at times excruciating pain 15-30 minutes after eating. I had this pain for many years before it was diagnosed and surgically corrected by cutting the ligament. End of pain.
My other rare problem would not apply to you- a type of autoimmune intestinal illness caused by intestines being damaged from chemo.
You may want to bring up MALS- you have had many scans etc. but it may not have seen this problem.
It is diagnosed with abdominal Doppler ultrasound or abdominal CT angiogram. There could also be other abdominal arteries with similar problems.
Bloating goes with everything!
Did they test you for delayed gastric emptying?

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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'm so sorry to hear about your plight, and at such a young age. I'm a 69 y/o male and have been struggling with constipation for the last year - but I'm old and this is not unusual. But a few ideas for you:

1. You went from eating very healthy at home to join the world of (largely) processed foods. Your body simply didn't know how to handle it. That doesn't explain the five-year duration. So rather than try to follow exotic diets, maybe go back to what your diet looked like at home?

2. To help my digestion and limit the severity of constipation, and to lose some fat and feel better in the gym, I have drastically cut down on refined sugars, primarily regular coke (loaded with sugar). Even so-called healthy drinks like Vitamin Water can be loaded with sugar as can dried fruit like raisins. So take a close look at how much refined sugar you eat (it hides well) and cut down. Treat yourself, but cut down. And sugar increases inflammation and I believe you will just feel better and more clear-headed.

3. Keep it simple. Make it a point to eat some raw fruits each day and some raw vegetables each day, nothing fancy (I love raw baby carrots and raw sweet peas still in the pod). If you like cereal, change to muesli and add some plain, non-sweetened greek yogurt for protein and healthy fat and milk if you like. To sweeten, add just a LITTLE of a sweetened cereal like Raisin Bran or honey nut Cheerios.

4. Do at least 3 or 4 sessions of cardio at the gym each week - stationary bike, rowing machine, treadmill or elliptical trainer. I love using a rowing machine because it works 80% of the body and gets your knees up above your waist, helping peristaltic motion and easing constipation. If you run, running really kickstarts the intestines to move in some people.

I know there is nothing exciting or exotic or new about these recommendations. I do them and they work well. Finally, if constipation remains a problem, Miralax should make your Motegrity more effective.

I hope this helps. GI issues are just no fun. Stick with it, and all the best.

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Profile picture for debstummy2023 @debstummy2023

Hi, it's amazing that I have had the exact same situation going on since Thanksgiving Day 2018. Been diagnosed with IBSC. All kinds of tests, scans, colonoscopy, endoscopy... You name it. My issues are slow digestion, constipation, pain, and bloating. Been on 290 much. Linzess; doesn't work, Amitiza; doesn't work, so I alternate my laxatives. M.O.M. one day, Magnesium Citrate, Dulcolax tablets and suppositories. But it takes twice as long to work ( up to 16 hours), and I take double or triple the recommended dose. It's affecting my life and mental well-being.

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Know how you feel, it is ruining my life. Was dx with diverticulitis or the other I don't remember. I eat well and stopped drinking alcohol. I do smoke though. Gastro doctors are horrible, pay for pay for that.

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Profile picture for debbiet2 @debbiet2

Know how you feel, it is ruining my life. Was dx with diverticulitis or the other I don't remember. I eat well and stopped drinking alcohol. I do smoke though. Gastro doctors are horrible, pay for pay for that.

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Oh my gosh! Same here! Told me on last year's endoscopy I had ALD ( alcoholic liver disease) , I'm turning 64 and started drinking when I was 17, so I guess it all caught up with me. I stopped drinking as well, but still smoke. Don't feel any better though.
With all the technology, I don't understand why these GI Drs. can't help so many of us. And I was told they don't do "direct admission" into hospital anymore; have to go to ER,; at least in CT which I actually did; what a waste of time and money! And your name is Debbie, too? Wow ! I just joined this group yesterday and you were the first person I reached out to. Thanks for that, Debbie. Wish we could find answers. Deb 🙏

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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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Where are you from? Florida here.

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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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Where are you from? Florida here. Gallbladder removed 20 yrs ago

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Profile picture for debstummy2023 @debstummy2023

Hi, it's amazing that I have had the exact same situation going on since Thanksgiving Day 2018. Been diagnosed with IBSC. All kinds of tests, scans, colonoscopy, endoscopy... You name it. My issues are slow digestion, constipation, pain, and bloating. Been on 290 much. Linzess; doesn't work, Amitiza; doesn't work, so I alternate my laxatives. M.O.M. one day, Magnesium Citrate, Dulcolax tablets and suppositories. But it takes twice as long to work ( up to 16 hours), and I take double or triple the recommended dose. It's affecting my life and mental well-being.

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@debstummy2023 .. slow digestion... can be Gastropanesis... Have you been to Mayo GI dept...for a diagnosis.. they are #1.. what my local GIs could not figure out in 2 months Mayo GI figured out in a day... get a referral from locals and go to
the best..

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Profile picture for debbiet2 @debbiet2

Where are you from? Florida here.

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I'm in CT...
From my prior comment about Drs. don't do direct admission to hospitals; have to go to ER,; is it the same way in FL?

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Profile picture for ken82 @ken82

@debstummy2023 .. slow digestion... can be Gastropanesis... Have you been to Mayo GI dept...for a diagnosis.. they are #1.. what my local GIs could not figure out in 2 months Mayo GI figured out in a day... get a referral from locals and go to
the best..

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Thanks, no I haven't, but think I will! Deb

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