Chronic (15yrs) Severe Cyclical Digestive Issues- No Diagnosis- HELP

Posted by julsnealey @julsnealey, Feb 1, 2023

I have had chronic, cyclical digestive issues for over 15yrs.
THE CYCLE: No, or minimal BM's for 2-10days. Over that time frame I get increased bloating, severe painful gas, nausea and feeling full after a few bites. Without warning, I will get an extremely urgent need to have a BM, along with aching joints in wrists, knees etc. (So urgent, I have had an accident 2x) With this urgency, I will have severe abdominal pains and while having a BM, I will repeatedly vomit at the same time. (I have bowls in all my bathrooms for this) This will go on for 20mins - 60mins of BM/vomiting/pain, aside from shakiness and weakness, the symptoms are relieved, but the cycle starts all over again.

I go copious amounts of looser stool. Never hard stool, even though I have not gone to the bathroom for 3-10days. Its truly like there is a kink in a hose and everything backs up behind the kink until it gets too much. When it "gets too much"(I never know when this will occur) and I have become increasingly more uncomfortable, bloated and have such horrible gas I can't stand up straight. This "purging" vomiting/loose stool at the same time, can go on for a few days, depending on the length of time since I have gone, or simply be a one time, violent "purge" episode.

This has been getting increasingly worse as I get older. I am a 53 yr old female.

TESTS: Swallow Study, LES not working correctly, sliding hiatal hernia, endoscopies with some inflammatory lesions (no obvious cause) Stool samples show chronic inflammation indicators in the stool, low potassium, and chronic anemia and intermittent high blood protein. Colonoscopies show nothing horribly obvious. I swallowed a camera capsule and it was determined that I had very rapid movement through the small intestines, some inflamed lesions through out intestines, but no diagnosis. I do get very thirsty and drink about 70oz of water a day. There are no food triggers that we can find.

Does anyone have similar issues? A doctor that I should see to help with this? I am desperate. I would love any help you may have.

Doctors are stumped and I am getting increasingly more depressed as I feel more and more sick. There is no relief.

Medications: NEXIUM
LEXAPRO
TRAZADONE

I get

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@fotula

I know this is a far fetched idea but, have you had a hormone profile done to see if this is all hormone related?

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I don’t think I have had a hormone test. I had a complete hysterectomy about 25 years so I don’t really think about hormones! I will look into this.

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@ilean
I was going to suggest same idea as @lasirvlasirvent did.
Median Arcuate Ligament Syndrome -MALS
This can cause celiac artery compression, resulting in similar pain, nausea and weight loss as you describe.
I have gone through that- extreme pain with eating, nausea, lack of appetite, bloating, feeling full after one bite etc.
Diagnosed with abdominal Doppler ultrasound and/ or CT Angiogram.
You said they already checked for that but I would ask them to look again at the arteries serving stomach, intestines and the other organs. Can’t hurt to do it again.

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Have Drs. Checked for gastroparesis or for your bowel endometriosis?

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Thanks for the recommendations. I just saw my new GI for the first time last week. I am going to mail him all the scans on a disk

They have checked for gastroperesis but I have never heard of bowel endometriosis!

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