1. < Digestive Health

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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annabelle1245 @annabelle1245 | @annabelle6dawgs | Feb 2, 2023

Hi (@julsnealey) -
I am so sorry to hear about your medical condition. Have you seen a Mayo GI doctor? I have found them to be excellent at diagnosing Medical conditions. I am not a healthcare provider but have had GI issues for more than 10 years and they have helped immensely. I do hope you find some relief soon. Wishing you good health.
Annabelle

REPLY
julsnealey | @julsnealey | Feb 2, 2023

Thank you so much. It has been getting increasingly more difficult to endure. I am trying to find a doctor through Mayo clinic but have no idea where to start. I tried filling out the information on line for Mayo Clinic GI Consultants, but every time I submitted it says "Your submission could not be completed at this time, try again later". I tried two times and got the same error message.

I live in Seattle and have some great GI Doctors, but their knowledge is exhausted.

REPLY
1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 3, 2023
In reply to @julsnealey "Thank you so much. It has been getting increasingly more difficult to endure. I am trying..." + (show)
@julsnealey

Thank you so much. It has been getting increasingly more difficult to endure. I am trying to find a doctor through Mayo clinic but have no idea where to start. I tried filling out the information on line for Mayo Clinic GI Consultants, but every time I submitted it says "Your submission could not be completed at this time, try again later". I tried two times and got the same error message.

I live in Seattle and have some great GI Doctors, but their knowledge is exhausted.

Jump to this post

@julsnealey
Welcome to Connect!
You can also make an appointment by phone- information should be on the same page as the online one. Here is a link- scroll down:
https://www.mayoclinic.org/appointments

REPLY
ilean | @ilean | Feb 4, 2023

I tried to get into Mayo but they didn’t accept me. Why? I have no idea. Been diagnosed with POTS in August 2022. Have lost 26 lbs(weigh 97 lbs now, 2 endoscopies, 2 colonoscopies, Ct’s, MRA, MRI, 3 GI’s, 2 pain doctors, 4 ER visits, Gallbladder removed, enlarged parathyroid removed, seen allergist, urologist, PCP, 2 general surgeons seen for opinion, etc….more meds than you can imagine, delayed gastric emptying test, pill camera swallow. No-one can diagnose my severe upper abdominal pain, gas, bloating, severe nausea 60 percent of the time. It hurts so badly if I eat I now have food aversion. Have had 2 different nerve blocks, Ketamine injection How sick do you have to be to be able to see a Dr at the Mayo Clinic. I am malnourished and dehydrated. The dehydration was even noted on my MRI results. My PCP says he no longer has hospital privileges, GI Drs all said they have never admitted anyone to the hospital or requested home health for dehydration or malnourishment. UTSW is scheduling appointments 13 months out. I won’t be alive in 13 months. I have been pretty much bedridden since January 2022.

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2 replies
redfinch | @redfinch | Feb 14, 2023

This is serious suggestion:start changing, checking filters in refrigerator, in your Keurig, whatever. I was horrified ti see the filter I pulled out of the Keurig thus morning. Is it holding high enough water temperature? Items to check off of box. I feel for you!

REPLY
lasirvent | @lasirvent | Feb 15, 2023
In reply to @ilean "I tried to get into Mayo but they didn’t accept me. Why? I have no idea...." + (show)
@ilean

I tried to get into Mayo but they didn’t accept me. Why? I have no idea. Been diagnosed with POTS in August 2022. Have lost 26 lbs(weigh 97 lbs now, 2 endoscopies, 2 colonoscopies, Ct’s, MRA, MRI, 3 GI’s, 2 pain doctors, 4 ER visits, Gallbladder removed, enlarged parathyroid removed, seen allergist, urologist, PCP, 2 general surgeons seen for opinion, etc….more meds than you can imagine, delayed gastric emptying test, pill camera swallow. No-one can diagnose my severe upper abdominal pain, gas, bloating, severe nausea 60 percent of the time. It hurts so badly if I eat I now have food aversion. Have had 2 different nerve blocks, Ketamine injection How sick do you have to be to be able to see a Dr at the Mayo Clinic. I am malnourished and dehydrated. The dehydration was even noted on my MRI results. My PCP says he no longer has hospital privileges, GI Drs all said they have never admitted anyone to the hospital or requested home health for dehydration or malnourishment. UTSW is scheduling appointments 13 months out. I won’t be alive in 13 months. I have been pretty much bedridden since January 2022.

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Please look into Mesenteric artery ligament syndrome. The epigastric pain during/after eating and digestive issues are big signals.

REPLY
ilean | @ilean | Feb 16, 2023

The doctors have looked for that. Thanks for reaching out! I think it’s going to be something unusual.

REPLY
1 reply
fotula | @fotula | Feb 17, 2023
In reply to @ilean "The doctors have looked for that. Thanks for reaching out! I think it’s going to be..." + (show)
@ilean

The doctors have looked for that. Thanks for reaching out! I think it’s going to be something unusual.

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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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1 reply
susanh824 | @susanh824 | Feb 18, 2023
In reply to @ilean "I tried to get into Mayo but they didn’t accept me. Why? I have no idea...." + (show)
@ilean

I tried to get into Mayo but they didn’t accept me. Why? I have no idea. Been diagnosed with POTS in August 2022. Have lost 26 lbs(weigh 97 lbs now, 2 endoscopies, 2 colonoscopies, Ct’s, MRA, MRI, 3 GI’s, 2 pain doctors, 4 ER visits, Gallbladder removed, enlarged parathyroid removed, seen allergist, urologist, PCP, 2 general surgeons seen for opinion, etc….more meds than you can imagine, delayed gastric emptying test, pill camera swallow. No-one can diagnose my severe upper abdominal pain, gas, bloating, severe nausea 60 percent of the time. It hurts so badly if I eat I now have food aversion. Have had 2 different nerve blocks, Ketamine injection How sick do you have to be to be able to see a Dr at the Mayo Clinic. I am malnourished and dehydrated. The dehydration was even noted on my MRI results. My PCP says he no longer has hospital privileges, GI Drs all said they have never admitted anyone to the hospital or requested home health for dehydration or malnourishment. UTSW is scheduling appointments 13 months out. I won’t be alive in 13 months. I have been pretty much bedridden since January 2022.

Jump to this post

Have you been tested for Chronic pancreatitis or EPI? If you haven’t had one already, ask for a fecal elastase test. Good luck!

REPLY
1 reply
ilean | @ilean | Feb 18, 2023
In reply to @susanh824 "Have you been tested for Chronic pancreatitis or EPI? If you haven’t had one already, ask..." + (show)
@susanh824

Have you been tested for Chronic pancreatitis or EPI? If you haven’t had one already, ask for a fecal elastase test. Good luck!

Jump to this post

Yes I did a stool test and everything looked ok. Please keep sending ideas if you think of anything!!

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