1. < Digestive Health

Chronic Digestive Disorders

Posted by rozy288 @rozy288, Jun 5, 2021

I am suffering 7 years with chronic digestive disorders , that take me out every day and night . I have Chronic Gastritis, Esophagitis, Class B GERD , small Hiatal hernia , diverticulosis. The worse thing is , I deep wet beach what tastes like sewer water 2000-3000 x a day/ night . My gut can’t handle any kind of food . It just constantly churns and is so loud , non stop . I live on Ultra Pepto . I’ve tried everything under the sun , RX wise , holistic wise , diet and elimination wise . Had so many tests done ✅. Even did acupuncture and 3 sessions of hypnotherapy. 6 Gastro Drs , in 2 states . I’m not celiac and no h pylori . I Eat small and healthy when I can eat . No fast food , no caffeine , low sugar ( just fruit) low dairy . Tried Keto and Gluten free . I’m on waitlist for Mayo Clinic in Jacksonville 6 weeks now . I’m a medical mystery and it’s now getting to me emotionally. I can’t lead a normal life . So much I want to do and I’m always sick . No Dr. has helped yet . I pray daily for relief of symptoms. Even for a day or two of relief. I’m desperately seeking and tried everything they make for gut health on Amazon. Today I will start on antidepressant . I’m sick if I eat or don’t eat and have empty stomach. We rarely go out to lunch and never to dinner . Just cook at Home . My poor body is getting weary of this . 7 years taken away and counting .
Thanks, Rosemary

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annie2 | @annie2 | Jul 26, 2021
In reply to @triciapet "I have a type of microscopic colitis, collagenous colitis. Some dr.s don’t believe in it. You..." + (show)
@triciapet

I have a type of microscopic colitis, collagenous colitis. Some dr.s don’t believe in it. You have to ask your gastro if they believe in it.
When they do a regular colonoscopy the dr. Has to take several large biopsies to find it. The dr.s Can’t see it so they are just hoping to catch it in a sample they send the lab. Took me 11 years to get diagnosed. I hope you find out what’s going on soon.

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I have been suffering from similar symptoms for many years. It goes into remission and then comes back. I am currently in a flair for about three weeks now and don't know when it will end. May I ask how they are treating you and if your symptoms have lessened?

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1 reply
KRF | @keetar | Jul 27, 2021

I am so sorry Rosemary. I am at Mayo this week trying to find root cause of SIBO. I assume you have had an endoscope to test for that? Trio Breath test is good as well. It will show hydrogen sulfide Sibo Other breath tests will not. In addition I went down the integrative medicine road and did the GI map test. Something to consider. Hang in there. Wishing you some answers soon!!

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rozy288 | @rozy288 | Jul 28, 2021
In reply to @keetar "I am so sorry Rosemary. I am at Mayo this week trying to find root cause..." + (show)
@keetar

I am so sorry Rosemary. I am at Mayo this week trying to find root cause of SIBO. I assume you have had an endoscope to test for that? Trio Breath test is good as well. It will show hydrogen sulfide Sibo Other breath tests will not. In addition I went down the integrative medicine road and did the GI map test. Something to consider. Hang in there. Wishing you some answers soon!!

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@keetafox Wow great info to know !! I kept a screen shot of it . I’ve done many Hydrogen and SIBO breath tests over years . Always come back negative. I even had a Dr. put me on Xifaxan 3 diff times in 5 years . I’ve done everything, pretty much .
The New Gastro up there will want to re-do it all I’m sure .
Where do you stay while there .
We are 3 hours south and will be booking a place on VRBO so we can take our dogs w/ us the 3 or so nights while im being tested .
How long you there for and from where ?
Hope they figure us both out ! Rosemary

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KRF | @keetar | Jul 28, 2021
In reply to @annie2 "I have been suffering from similar symptoms for many years. It goes into remission and then..." + (show)
@annie2

I have been suffering from similar symptoms for many years. It goes into remission and then comes back. I am currently in a flair for about three weeks now and don't know when it will end. May I ask how they are treating you and if your symptoms have lessened?

Jump to this post

Hi Rosemary
I Stay at hotel indigo for convenience Can walk through subway right to any appointments. This time I have 3 days of tests or appointments. First time I was here I had weeks of appointments with many different docs for other issues beside GI. I have had egg test for motility. And other motility tests where you do things like poop out a balloon. Crazy stuff but will do anything to feel better. Have ruled out UC and Chrohns but I do have some motility issues. Best test for SIBO is endoscope into small intestine if you can get one. Hoping this visit will be productive. Wish all your visits are good. All kinds of places to eat here but you and I don’t care too much about that but good for those with us. Headed to a barium enema test now. Wishing all the best

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1 reply
rozy288 | @rozy288 | Jul 29, 2021
In reply to @keetar "Hi Rosemary I Stay at hotel indigo for convenience Can walk through subway right to any..." + (show)
@keetar

Hi Rosemary
I Stay at hotel indigo for convenience Can walk through subway right to any appointments. This time I have 3 days of tests or appointments. First time I was here I had weeks of appointments with many different docs for other issues beside GI. I have had egg test for motility. And other motility tests where you do things like poop out a balloon. Crazy stuff but will do anything to feel better. Have ruled out UC and Chrohns but I do have some motility issues. Best test for SIBO is endoscope into small intestine if you can get one. Hoping this visit will be productive. Wish all your visits are good. All kinds of places to eat here but you and I don’t care too much about that but good for those with us. Headed to a barium enema test now. Wishing all the best

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Wow keep me posted on results and treatment @keetafox !! I can’t be there for weeks . Days ok like 3 nights . That’s it .
I can’t afford every test they do either even w/ insurance.
I just had a second endoscopy & 3 rd colonoscopy Jun 2020 .
I’m sure that’s first thing they do again .
I will ask for those other two tests you told me about .
I’ve done about all the gastric emptying and C scan and ultrasounds , upper GI , stool sample , SIBO and Hydrogen breath tests . I still belch over 3000 x deep wet belches no acid fault / nightly and constant churning loud gut and intestines all hours day and night . It’s relentless and 7.5 years going . It’s ruined my life .
I’ve done ✅ a laundry list of things to try to help it .
It’s depressing.
I pray 🙏 this Dr will figure me out .
Best wishes !!

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1 reply
reallymg | @reallymg | Jul 30, 2021
In reply to @rozy288 "@collage even though my SIBO tests came back negative a ( few times ) over last..." + (show)
@rozy288

@collage even though my SIBO tests came back negative a ( few times ) over last 7 years. I asked the Dr’s to put me on Xifaxan ( antibiotics for h pylori ) anyway to see if it would help my chronic digestive disorders. The 1 st time it was 14 days on it . It seemed to help me for a month or so . Then everything came back . 2 nd & 3 rd time a year apart it didn’t help at all .
If all you have in nausea in morning, you are very lucky . I know it’s horrible to feel like that …but being so chronic in my digestive system and intestines for 7.5 years and so many tests and Dr’s later .. I would take what you have and be really happy that’s all it is .
I’m still searching and struggling daily w/ so much . I do finally have a televisit w/ Gastro Dr at Mayo Clinic Jacksonville on Sept 7 th . Been waiting since May .
My 6 th Gastro Dr. but never from there before. It’s 3 hrs away so I want to start w/ televisit. I cannot lead any type of normal life . This is my last ditch effort. I hope you find the relief you need . God Bless , Rosemary

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I don't know all your issues but GI issues are often linked to an out of whack thyroid. I know. I had GI issues for years and when my thyroid issue was found and resolved, it got soooo much better. Good luck!

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2 replies
euqcaj | @euqcaj | Jul 31, 2021
In reply to @reallymg "I don't know all your issues but GI issues are often linked to an out of..." + (show)
@reallymg

I don't know all your issues but GI issues are often linked to an out of whack thyroid. I know. I had GI issues for years and when my thyroid issue was found and resolved, it got soooo much better. Good luck!

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This is true but I've been on thyroid all my life and I'm 70. I still have a "tortuous intestine" and complications that must be dealt with by other means. I really wish I could just take my thyroid and it would resolve everything. I'm truly happy for you! And again, it is true the thyroid does affect digestion.

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1 reply
reallymg | @reallymg | Jul 31, 2021
In reply to @euqcaj "This is true but I've been on thyroid all my life and I'm 70. I still..." + (show)
@euqcaj

This is true but I've been on thyroid all my life and I'm 70. I still have a "tortuous intestine" and complications that must be dealt with by other means. I really wish I could just take my thyroid and it would resolve everything. I'm truly happy for you! And again, it is true the thyroid does affect digestion.

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I really hope you get it figured out it sounds so unfair to have tried and nothing comes of it. Good luck.

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KRF | @keetar | Aug 1, 2021
In reply to @rozy288 "Wow keep me posted on results and treatment @keetafox !! I can’t be there for weeks..." + (show)
@rozy288

Wow keep me posted on results and treatment @keetafox !! I can’t be there for weeks . Days ok like 3 nights . That’s it .
I can’t afford every test they do either even w/ insurance.
I just had a second endoscopy & 3 rd colonoscopy Jun 2020 .
I’m sure that’s first thing they do again .
I will ask for those other two tests you told me about .
I’ve done about all the gastric emptying and C scan and ultrasounds , upper GI , stool sample , SIBO and Hydrogen breath tests . I still belch over 3000 x deep wet belches no acid fault / nightly and constant churning loud gut and intestines all hours day and night . It’s relentless and 7.5 years going . It’s ruined my life .
I’ve done ✅ a laundry list of things to try to help it .
It’s depressing.
I pray 🙏 this Dr will figure me out .
Best wishes !!

Jump to this post

Hi Rosemary Just got back from Mayo after 3 days. For me the messge was stay the course with SIBO treatment after twisted colon surgery (which removed by cecal valve). This might be a chronic situation for me. I also have Sjogrens but dont treat it with immunosuppresants as I dont like them ( personal choice). I will say a prayer for you to get answers after 7 years. I have only dealt with this for 2 years now. Sounds like you have done so much to try and figure this out. Hang in there. I dont think they do the Trio Breath Test at Mayo. I asked about it as well. That would probably be through a functional practictioner but Mayo should definitely be able to do an endoscope that goes into the intestines and takes a biopsy/culture. Have you had one of those done yet? I am wishing you all the best. Remember to be your own advocate. If you think there are other doctors you need to see there besides GI for various symptoms do not hesitate to ask. This is your shot to figure it all out so be brave, be strong and politely demanding. They are there to help you!!! Keep us posted.

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1 reply
KRF | @keetar | Aug 1, 2021
In reply to @keetar "Hi Rosemary Just got back from Mayo after 3 days. For me the messge was stay..." + (show)
@keetar

Hi Rosemary Just got back from Mayo after 3 days. For me the messge was stay the course with SIBO treatment after twisted colon surgery (which removed by cecal valve). This might be a chronic situation for me. I also have Sjogrens but dont treat it with immunosuppresants as I dont like them ( personal choice). I will say a prayer for you to get answers after 7 years. I have only dealt with this for 2 years now. Sounds like you have done so much to try and figure this out. Hang in there. I dont think they do the Trio Breath Test at Mayo. I asked about it as well. That would probably be through a functional practictioner but Mayo should definitely be able to do an endoscope that goes into the intestines and takes a biopsy/culture. Have you had one of those done yet? I am wishing you all the best. Remember to be your own advocate. If you think there are other doctors you need to see there besides GI for various symptoms do not hesitate to ask. This is your shot to figure it all out so be brave, be strong and politely demanding. They are there to help you!!! Keep us posted.

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Rosemary GI Map is also functional medicine. Mayo will not evaluate those results. I asked them and they said no.I am trying to get a future telehealth appointment with their integrative medicine group at Mayo. Will let you know if I have any luck with that group. Wishing you future days of healing soon!

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