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Gastritis, Esophagitis, GERD , small Hiatal hernia , diverticulosis
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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Rosemary,
My heart goes out to you. Ive dealt with digestive issues since 3rd grade which was oh like.. 36 years ago but whos counting?!?! .... Been down some pretty rough physical trials and had gotten so bad that for several years, I just prayed that God would take me home to Heaven cause the physical digestive pains and challenges were so completely draining and ruined life. It was rough rough rough. Ugh and shudder. I got into Mayo in January and am working with a few departments one of which is the integrative department and a nutritionist through them. They put me on some supplements and the SCD diet and it has been life-changing!!! The SCD diet is the specific carbohydrate diet. http://www.breakingtheviciouscycle.info/ It takes commitment and work to get going on it but its doable with the support of the nutritionist and my Mayo doc. Mention it to your Mayo doctors and see if they can guide you on it. Of all the diets I have been put on, I am having the most success with this one.
My best to you!
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1 Reaction@livefully Thank you for your story and your advice. I understand what you mean 😢. It robs you of your Joy . I used to be so outgoing and such a go getter . No more , not for years ..thanks to these chronic daily digestive disorders. I will ask my new Gastro Dr . At the Mayo Clinic on my televisit on Sept 7 th about what you mentioned. Thanks for caring . It’s hard 🙁 . I’ll keep you all updated . Many Blessings…. , Rosemary 🙏💕
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1 Reaction@livefully i ordered the book from EBay for $4.38 used . I give it a read and see what it says and try it out . I’ll do anything!!! I’m actually hoping this 5 th Gastro Dr. at Mayo finds something besides what I already know I have ( which they can’t help me with ). A Diagnosis that can be fixed !! Thanks again .
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1 ReactionThey also put me on the Elemental drinks so Im not just on the SCD but on Elemental Heal (its the brand name of the elemental drinks) as well as the SCD diet and about 5 targeted supplements. I see Dr Perlman at the Mayo Flordia as well as one of the nutritionist. The Elemental Heal is a supplement that helps me absorb all the nutrients I need as Im not yet able to absorb all the nutrients I need from the food I eat.
As for joy, I learned to look for it in the small things, learned to become grateful for just small and simple things, and kept pushing myself forward... end of story. No quitting. I have a great support system though so that is HUGE and I hang onto faith like it's everything. When I get tired of hanging on, my family hangs on for me. 🙂 The SCD diet will require work on your part so its not "easy peasy" but so far, its been huge in helping with the absorption of nutrients, belching, bloating that makes me look pregnant, and taming the "great poop challenges" that I really should write a book about... Do ask your Mayo doc about it. It might not be "right" for you, but you wont know unless you ask. You got this!
Glad you found it and will read it. Cant hurt to ask your Mayo Gastro about it... Your diagnosis is fixable.. will just take the "right" person to figure it out. I pray that person comes soon for you. In the meantime, keep learning, dont give up, make yourself a vision wall board (pictures of where you want to be in life and doing what), write out your goals, learn like there is no tomorrow, and cut yourself slack.. you are dealing with digestive issues most folks dont have to so you get to count getting out of bed a victory for the day and anything above that is a double victory. 🙂 Best to you for your Gastro appointment at Mayo.
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?
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!!
@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
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
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 !!