Chronic Digestive Disorders

Posted by rozy288 @rozy288, Jun 5 3:21pm

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

Deep wet Belching I meant 3000 or more times a day/ night. Typo .

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I just got back from Jacksonville Mayo for the second time. I have a bit different symptoms but also spent 8 years of Gastro docs and not getting any better. Trick to Mayo is to keep calling them and one day I did. I also moved across country to try more docs , so I know what you mean there. One day I called Mayo and suddenly poof! They made my appointment. They will listen and go over every item with you then hang on tight for every test you can imagine. It was exhausting but I leaned so much about what I really do and do not have. I go back for a third time for more test but they have been great with me. I feel like now I am on great hands. Have you had an endoscopy done yet?

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I went through something like that for 8 years before a GI doctor finally took a microscopic sample and discovered my lymphocytic (microscopic) colitis…it cannot be seen in a normal colonoscopy. It's not fun to have, but it turned out to be none of the food allergies, etc., that I thought I might have. Now, at least, I know it's not dairy products or celiac disease. I encourage you to make sure the doctor looks at a sample under a microscope if you haven't already.

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@gastrogirl

I just got back from Jacksonville Mayo for the second time. I have a bit different symptoms but also spent 8 years of Gastro docs and not getting any better. Trick to Mayo is to keep calling them and one day I did. I also moved across country to try more docs , so I know what you mean there. One day I called Mayo and suddenly poof! They made my appointment. They will listen and go over every item with you then hang on tight for every test you can imagine. It was exhausting but I leaned so much about what I really do and do not have. I go back for a third time for more test but they have been great with me. I feel like now I am on great hands. Have you had an endoscopy done yet?

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Thank you , yes .. I’ve had a couple endoscopy’s and colonoscopy’s . Just the results I wrote above were found. Two diff Gastro Dr’s. Can you tell me what they did test wise for you ? I’ve had so many tests done at Duke Regional in NC when I lived in Mebane, NC for 5 years. We are now in West Melbourne, Fla . Things have only gotten much worse through the years for me . I’ll keep calling Mayo Clinic in Jacksonville. How are you feeling these days and did they give you meds or a treatment plan ? Thanks for sharing .. Rosemary

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@washalien

I went through something like that for 8 years before a GI doctor finally took a microscopic sample and discovered my lymphocytic (microscopic) colitis…it cannot be seen in a normal colonoscopy. It's not fun to have, but it turned out to be none of the food allergies, etc., that I thought I might have. Now, at least, I know it's not dairy products or celiac disease. I encourage you to make sure the doctor looks at a sample under a microscope if you haven't already.

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Hi , Thanks .. I’ve had two colonoscopies in 8 years most recently last June w/ another endoscopy. They took a sample at the time which didn’t turn out to be anything. I’m diagnosed with all the things I listed above . Doesn’t change the fact no one can help me . I have extreme chronic violent loud churning along with over 3000-4000 deep wet belches day and night . As I said I’ve tried it all . If they do another endoscopy or colonoscopy, I’ll make sure they look under microscope 🔬 though . What is your treatment for that may I ask ? I’m desperately seeking help . I hope I get to Mayo Clinic Jacksonville soon . Thanks for responding . Rosemary

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@rozy288

Hi , Thanks .. I’ve had two colonoscopies in 8 years most recently last June w/ another endoscopy. They took a sample at the time which didn’t turn out to be anything. I’m diagnosed with all the things I listed above . Doesn’t change the fact no one can help me . I have extreme chronic violent loud churning along with over 3000-4000 deep wet belches day and night . As I said I’ve tried it all . If they do another endoscopy or colonoscopy, I’ll make sure they look under microscope 🔬 though . What is your treatment for that may I ask ? I’m desperately seeking help . I hope I get to Mayo Clinic Jacksonville soon . Thanks for responding . Rosemary

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I seem to do pretty well when I take Colestipol and avoid ANY alcohol. I seem to find that I can eat most things without a problem now. (I find I can tolerate Heineken 0.0, which actually has only 0.5% alcohol, and tastes pretty good on a hot summer day.) I've had genetic testing that tells me I'm fine with dairy, so cheese is okay. Since I had cancer, I try to eat mostly organic foods. I'm so sorry you're having to suffer so much. I had a colonoscopy at the beginning of the 8 years, and it didn't show up. I'm pretty sure that the doctor did not check a sample under a microscope. All those years later, I couldn't eat even rice crackers without losing weight and was wasting away. Even though it's a chronic condition, I was thrilled to actually have a diagnosis. Before, I often felt like the ocean was surging inside my gut, and it was loud and painful. I wish you well in Jacksonville, and do ask about microscopic colitis. They're supposed to be the best!

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@rozy288

Thank you , yes .. I’ve had a couple endoscopy’s and colonoscopy’s . Just the results I wrote above were found. Two diff Gastro Dr’s. Can you tell me what they did test wise for you ? I’ve had so many tests done at Duke Regional in NC when I lived in Mebane, NC for 5 years. We are now in West Melbourne, Fla . Things have only gotten much worse through the years for me . I’ll keep calling Mayo Clinic in Jacksonville. How are you feeling these days and did they give you meds or a treatment plan ? Thanks for sharing .. Rosemary

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I would be happy too. Can you send me a friend request on here and I will tell you via private message 🙂

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@washalien

I seem to do pretty well when I take Colestipol and avoid ANY alcohol. I seem to find that I can eat most things without a problem now. (I find I can tolerate Heineken 0.0, which actually has only 0.5% alcohol, and tastes pretty good on a hot summer day.) I've had genetic testing that tells me I'm fine with dairy, so cheese is okay. Since I had cancer, I try to eat mostly organic foods. I'm so sorry you're having to suffer so much. I had a colonoscopy at the beginning of the 8 years, and it didn't show up. I'm pretty sure that the doctor did not check a sample under a microscope. All those years later, I couldn't eat even rice crackers without losing weight and was wasting away. Even though it's a chronic condition, I was thrilled to actually have a diagnosis. Before, I often felt like the ocean was surging inside my gut, and it was loud and painful. I wish you well in Jacksonville, and do ask about microscopic colitis. They're supposed to be the best!

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Thank you so much . I’m getting depressed because no Gastro Dr. can help me . I’m praying 🙏 that I get into Mayo Clinic Jacksonville sooner than later . I’ll def ask about what you mentioned . I’ve had so many tests over the years , I eat so healthy but I suffer anyway with any food ( it’s terrible on empty stomach too) . No allergies to food showed up in tests . I’m not losing weight at all through all these years . I should be 25 lbs lighter because I eat healthy and avoid all triggers . It’s relentless. Thanks again .

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@rozy288

Thank you so much . I’m getting depressed because no Gastro Dr. can help me . I’m praying 🙏 that I get into Mayo Clinic Jacksonville sooner than later . I’ll def ask about what you mentioned . I’ve had so many tests over the years , I eat so healthy but I suffer anyway with any food ( it’s terrible on empty stomach too) . No allergies to food showed up in tests . I’m not losing weight at all through all these years . I should be 25 lbs lighter because I eat healthy and avoid all triggers . It’s relentless. Thanks again .

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@ rozy288

Am I understanding correctly that you do not have an appointment at Mayo Clinic?

If not… Do keep calling, but it may be helpful to get a referral from one of your doctors. They will understand more fully that you need help that you have not been able to receive from other doctors.

When you say deep wet belches. I am a little lost. I have had all types of belches that sometimes acid came up… sometimes food, sometimes mucus.. and sometimes it is like water. Now it is the latter two mostly. I am not sure it matters what the wet is. I have had deep belches and it felt like something closed and trapped more air. Walking and massaging seems all that helped to ease the pain from them.

I have had 5 (the last 3 at the Mayo Clinic) upper abdominal surgeries and the last one was open. After the last surgery I was told that I would belch a lot the rest of my life and not to take gas-x nor things like Pepto Bismol .. they would not help. The doctor was correct.. they do not help me. Sometimes a liquid antacid will help the irritation in my throat. .. but the air continues.

I had a giant paraesophageal.. sliding hiatal hernia that seem to have caused most of my problems. If yours is small it does not sound like the problem.

I asked one of my doctors at the Mayo Clinic about the weight gain even though I…as my husband describes it.. ate like a bird. I also did a lot of walking and bicycle riding at the time. The doctor said “sometimes it just happens that way.. we do not know why”. He also said the gastric system is very complex and they are still learning about how it works… and that is why they do not always have an answer. It is not learned yet.

The doctors at the Mayo Clinic in Jacksonville have all been great that I have seen. I have seen many. A surgeon has a “team” (I am not sure how many there were, but at least 8 in my case.. I thing some may have been tagalongs that wanted to learn). I started off with a surgeon. Then a gastroenterologist was called in for consult. He had his NP and others with him. All of them together were my Patient Care Team. They work together for me to receive the best care at the Mayo Clinic.

I pray if you do not have an appointment that soon you will and know you will have excellent care and they will try to seek out what is causing your problems.

ZeeGee

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@fourof5zs

@ rozy288

Am I understanding correctly that you do not have an appointment at Mayo Clinic?

If not… Do keep calling, but it may be helpful to get a referral from one of your doctors. They will understand more fully that you need help that you have not been able to receive from other doctors.

When you say deep wet belches. I am a little lost. I have had all types of belches that sometimes acid came up… sometimes food, sometimes mucus.. and sometimes it is like water. Now it is the latter two mostly. I am not sure it matters what the wet is. I have had deep belches and it felt like something closed and trapped more air. Walking and massaging seems all that helped to ease the pain from them.

I have had 5 (the last 3 at the Mayo Clinic) upper abdominal surgeries and the last one was open. After the last surgery I was told that I would belch a lot the rest of my life and not to take gas-x nor things like Pepto Bismol .. they would not help. The doctor was correct.. they do not help me. Sometimes a liquid antacid will help the irritation in my throat. .. but the air continues.

I had a giant paraesophageal.. sliding hiatal hernia that seem to have caused most of my problems. If yours is small it does not sound like the problem.

I asked one of my doctors at the Mayo Clinic about the weight gain even though I…as my husband describes it.. ate like a bird. I also did a lot of walking and bicycle riding at the time. The doctor said “sometimes it just happens that way.. we do not know why”. He also said the gastric system is very complex and they are still learning about how it works… and that is why they do not always have an answer. It is not learned yet.

The doctors at the Mayo Clinic in Jacksonville have all been great that I have seen. I have seen many. A surgeon has a “team” (I am not sure how many there were, but at least 8 in my case.. I thing some may have been tagalongs that wanted to learn). I started off with a surgeon. Then a gastroenterologist was called in for consult. He had his NP and others with him. All of them together were my Patient Care Team. They work together for me to receive the best care at the Mayo Clinic.

I pray if you do not have an appointment that soon you will and know you will have excellent care and they will try to seek out what is causing your problems.

ZeeGee

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I had my heart Dr. and Gastro Dr. send referrals to Mayo Clinic, over 7 weeks ago . I’m on waitlist for a televisit they said 3 weeks ago . I’ll only get a call of someone cancels appt . I’m going to keep calling weekly now .
I have 1000’s of wet burps with non stop churning gut if I eat or don’t eat . They are huge and some liquid but not acid . It tastes like sewer water in my mouth . I do like on Ultra Pepto as it calms the volcano 🌋 gut for about half hour , but does nothing for the burping . I’ve tried it all , and I mean ALL . Sometimes it triggers my PVC’s too . I’m kinda at my wits end . Thank you for sharing your story w/ me . I need someone that can help this stop 🛑 or at least help me to have one day without symptoms in 7.5 years . I’m 59 and it’s ruined 7.5 years of my life already. Both my kids engaged and getting married in 2022 . I want to be able to feel myself again and be good for the big weddings. My husband is very understanding and has been there for me but it effects everything as I can’t do much as far as go out ..and it’s no fun for him at all . Praying 🙏 I get in soon .

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@gastrogirl

I would be happy too. Can you send me a friend request on here and I will tell you via private message 🙂

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I sent private message not sure it went over , I don’t see where you can friend someone on here ?

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@rozy288

I had my heart Dr. and Gastro Dr. send referrals to Mayo Clinic, over 7 weeks ago . I’m on waitlist for a televisit they said 3 weeks ago . I’ll only get a call of someone cancels appt . I’m going to keep calling weekly now .
I have 1000’s of wet burps with non stop churning gut if I eat or don’t eat . They are huge and some liquid but not acid . It tastes like sewer water in my mouth . I do like on Ultra Pepto as it calms the volcano 🌋 gut for about half hour , but does nothing for the burping . I’ve tried it all , and I mean ALL . Sometimes it triggers my PVC’s too . I’m kinda at my wits end . Thank you for sharing your story w/ me . I need someone that can help this stop 🛑 or at least help me to have one day without symptoms in 7.5 years . I’m 59 and it’s ruined 7.5 years of my life already. Both my kids engaged and getting married in 2022 . I want to be able to feel myself again and be good for the big weddings. My husband is very understanding and has been there for me but it effects everything as I can’t do much as far as go out ..and it’s no fun for him at all . Praying 🙏 I get in soon .

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@ rozy288
My husband keeps wanting me to go out on the boat with him. I don't think I could handle the jostling of the boat. I told him to get his brother or sister to go.. but he says it just isn't the same without you. I am still very limited on things I can do. .. I have other body problems. I had a SI joint fusion about 6 weeks ago. So far I think it worked. It changed my walk a bit so I am dealing with sore muscles and still some pain in surgery area. My ribs are giving me problems from the open surgery in 2015, but my pain specialist says he has found a way to help me with that pain, but have to get past this SI joint fusion first. I have missed out on a lot of things.. especially since 2012. I missed Thanksgiving dinners because the thought of food was overwhelming. Not a lot of bending.. don't lift over 10 pounds. Guess how much my last granddaughter weighed at birth.. I picked her up anyway. With my husband scolding me. Sometimes the pain is worth it. 😄 I have wanted to play with my grands and missed on doing a lot with them. We have 4 grands.

Covid has really messed everyone's working systems up. The Mayo Clinic is no exception. My doctors in home town .. they try not to have their waiting rooms full. They are beginning to relax with it some. Even though I have been vaccinated I will wear a mask in public.

Back to you. Have you kept a journal? Write in it what happens after you eat.. how long it lasted.. how much you ate. Does anything make it worse.. anything make it better… how lousy you feel. Yes, how you feel mentally.. write it down. All of it plays an important part in what is going on with your body. Have a written outline of your journal and of what you want to discuss with the doctors when you do talk with them. Take notes. Have someone with you if possible. An extra set of ears are definitely a good idea. My husband is the note taker. They may want to know what medications you are taking.. so have that handy. Sometimes they ask about your family health history… mostly parents, siblings, and grandparents.

I pray all goes well and you can get back to a happy life.

ZeeGee

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