Ulcerative colitis, gastritis, GERD, reflux

Over the last 6 years I have been diagnosed with mild gastritis, sm haital hernia & possibly SIBO. Also GERD & IBS diagnosed 20 yr ago. (I was also diagnosed with lung issues of Bronchiectasis and nontuberculosis mycobacterium infection after coughing up blood - during the same time period 6 yrs ago). But my worst symptoms disrupting my life are from my gut. Meds: have been on & off PPIs for more than 20 years (try to stay off completely, but hasn't seemed possible), famotidine when not on PPI, and tried most every functional med & holistic remedy.

I have a very limited, mostly FODMP diet, fresh veggies, some fruit, nothing processed, no dairy but hard cheese, no gluten, limited grains (translate: boring 😆). I exercise regularly & am quite thin. ALL tests (blood work, endoscopy, colonoscopy, heart, etc. are "normal" other than what I listed and some benign stomach polyps).

But frequently I get horrible upper gut pains (in center right below sternum) and to left under lower ribs. Bloated (I guess that's what it is-extreme pressure in upper stomach making me short of breath even), horrible nausea, unable to eat, pooping 5-6 times a day, chest pressure/pain, exhausted, sweating, horrible gut noises top to bottom. It can wake me in the night with gut pains & leg tremors. It can go on for 1 or 2 days (the best), or has been up to 2 weeks or more at times. I describe it as feeling like I ate something that has poisoned me! It is usually a day or so later, so I'm never sure if it is something in particular I ate. When I feel like this it gives me anxiety (which I don't have at any other time), which I know compounds the issue. I never know when it is going to hit or why, so that is stressful too. When this is not happening however, I can feel almost like I am a normal person.

MY QUESTION: Can foods that might trigger my IBS/GERD/hernia really make me feel this awful? They make IBS sound so benign, but this is absolutely miserable and completely makes me non-functional when it is happening and I know it sounds dramatic, but I feel like I am dying. I keep thinking it MUST be something else to make me feel sooooo bad. And why can I feel almost normal at times? Could you please share your experiences with IBS/GERD/Hiatal Hernia/Gastritis/SIBO so I can get some perspective on this?

Thank you so much!!

I deal GERD on a daily basis & take 40 mg of pantoprazole in the morning. I use a wedge pillow @ night. I had my first gastritis episode last year while having problems with gallbladder. To get gastritis under control - my doctor had me take 40 mg of a PPI in the morning and evening for 1 month - tapering back to 40mg. A few years back I had a SIBO episode and was treated with a course of antibiotics. Have not had another one since. Have you tried sucralfate or Atrantil. Also probiotics help. Hang in there - I know its awful what you are experiencing.

I am your twin, and I’m sorry for your struggle. I can relate! They believe my SEVERE swings from vicious diarrhea back to constipation every few days are from SIBO. I’m never been on the “Big 3.” My ID doc at Stanford says more and more Bronch/NTM patients are reporting this.

Thank you @jackielb ! I do sleep on incline & stop all food & drink 4 hours before bed. I have tried to avoid omeprazole/pantoprazole because of my lung infection & osteoporosis, but after 6 years of this misery I would take anything to feel better 😬, No one suggested to up my omeprazole so I will ask about that. (I did take really good probiotics for a couple years, to no avail.) I had not heard of sucralfate or Atrantil - thank you so much for the suggestions, I will ask my doc about them. Thank you for taking the time to share!

Oh, I'm so happy to hear from you @brigby 🤗. I've never been on the Big 3 either. Have you treated for SIBO? I did rifaximin once and flagyl once, felt better than I had in a long time while on the drug and shortly after, but it didn't last more than a month.

Very interesting what your ID doc has observed. I often wondered if sinuses are infected, and having bad post nasal drip, couldn't the bacteria end up in the gut? Or is it some other way our gut & lung issues are tied? Just hope someone can figure something out soon.
Thank you for being an encouragement as you press on through all of this!

Our gut acid should destroy all the bacteria we swallow…

Over the last 6 years I have been diagnosed with mild gastritis, sm haital hernia & possibly SIBO. Also GERD & IBS diagnosed 20 yr ago. (I was also diagnosed with lung issues of Bronchiectasis and nontuberculosis mycobacterium infection after coughing up blood - during the same time period 6 yrs ago). But my worst symptoms disrupting my life are from my gut. Meds: have been on & off PPIs for more than 20 years (try to stay off completely, but hasn't seemed possible), famotidine when not on PPI, and tried most every functional med & holistic remedy.

I have a very limited, mostly FODMP diet, fresh veggies, some fruit, nothing processed, no dairy but hard cheese, no gluten, limited grains (translate: boring 😆). I exercise regularly & am quite thin. ALL tests (blood work, endoscopy, colonoscopy, heart, etc. are "normal" other than what I listed and some benign stomach polyps).

But frequently I get horrible upper gut pains (in center right below sternum) and to left under lower ribs. Bloated (I guess that's what it is-extreme pressure in upper stomach making me short of breath even), horrible nausea, unable to eat, pooping 5-6 times a day, chest pressure/pain, exhausted, sweating, horrible gut noises top to bottom. It can wake me in the night with gut pains & leg tremors. It can go on for 1 or 2 days (the best), or has been up to 2 weeks or more at times. I describe it as feeling like I ate something that has poisoned me! It is usually a day or so later, so I'm never sure if it is something in particular I ate. When I feel like this it gives me anxiety (which I don't have at any other time), which I know compounds the issue. I never know when it is going to hit or why, so that is stressful too. When this is not happening however, I can feel almost like I am a normal person.

MY QUESTION: Can foods that might trigger my IBS/GERD/hernia really make me feel this awful? They make IBS sound so benign, but this is absolutely miserable and completely makes me non-functional when it is happening and I know it sounds dramatic, but I feel like I am dying. I keep thinking it MUST be something else to make me feel sooooo bad. And why can I feel almost normal at times? Could you please share your experiences with IBS/GERD/Hiatal Hernia/Gastritis/SIBO so I can get some perspective on this?

Thank you so much!!

I have very similar problems. I was having severe lower abdominal pain in one spot--so did colonoscopy--and when finished they told me I needed immediate surgery my intestines had shrunk to the size of little finger. Had a colostomy--which they said they would reverse in 6 months when it had had time to heal. Only the second surgery my intestines kept ripping apart when they tried to put me back together. Upshot I had 4 surgeries over 2 years, got sepsis, almost died, got through 3 colostomies and one ileostomy--all of which leaked constantly--ugggh. But eventually they put me back together. Year since then I had spontaneous rectal bleeding then the MOST painful episode when they told me I had torsion from all the scar tissue. Told me had to go on FODMAP diet--which is insane. No fruits, no vegetables, no dairy, no caffeine, no whole grains.
Basically I can have meat and white rice, white potatoes, sourdough bread. All of which I had eliminated from my diet years ago. (Not all meat--still ate chicken) I've been trying adding a few things back--I do okay with bananas & avocado, kefir, and one or two spoonfuls of steamed celery or onion. Trying yams next.
But I still have a pain from time to time in that origianl spot where they cut out my gut--don't know if it is like phantom limb pain or what.
Seems like the FODMAP is basically just "let's cover all the bases in case". Someone somewhere must be doing research on a beter approach?

Thank you @jackielb ! I do sleep on incline & stop all food & drink 4 hours before bed. I have tried to avoid omeprazole/pantoprazole because of my lung infection & osteoporosis, but after 6 years of this misery I would take anything to feel better 😬, No one suggested to up my omeprazole so I will ask about that. (I did take really good probiotics for a couple years, to no avail.) I had not heard of sucralfate or Atrantil - thank you so much for the suggestions, I will ask my doc about them. Thank you for taking the time to share!

Over the last 6 years I have been diagnosed with mild gastritis, sm haital hernia & possibly SIBO. Also GERD & IBS diagnosed 20 yr ago. (I was also diagnosed with lung issues of Bronchiectasis and nontuberculosis mycobacterium infection after coughing up blood - during the same time period 6 yrs ago). But my worst symptoms disrupting my life are from my gut. Meds: have been on & off PPIs for more than 20 years (try to stay off completely, but hasn't seemed possible), famotidine when not on PPI, and tried most every functional med & holistic remedy.

I have a very limited, mostly FODMP diet, fresh veggies, some fruit, nothing processed, no dairy but hard cheese, no gluten, limited grains (translate: boring 😆). I exercise regularly & am quite thin. ALL tests (blood work, endoscopy, colonoscopy, heart, etc. are "normal" other than what I listed and some benign stomach polyps).

But frequently I get horrible upper gut pains (in center right below sternum) and to left under lower ribs. Bloated (I guess that's what it is-extreme pressure in upper stomach making me short of breath even), horrible nausea, unable to eat, pooping 5-6 times a day, chest pressure/pain, exhausted, sweating, horrible gut noises top to bottom. It can wake me in the night with gut pains & leg tremors. It can go on for 1 or 2 days (the best), or has been up to 2 weeks or more at times. I describe it as feeling like I ate something that has poisoned me! It is usually a day or so later, so I'm never sure if it is something in particular I ate. When I feel like this it gives me anxiety (which I don't have at any other time), which I know compounds the issue. I never know when it is going to hit or why, so that is stressful too. When this is not happening however, I can feel almost like I am a normal person.

MY QUESTION: Can foods that might trigger my IBS/GERD/hernia really make me feel this awful? They make IBS sound so benign, but this is absolutely miserable and completely makes me non-functional when it is happening and I know it sounds dramatic, but I feel like I am dying. I keep thinking it MUST be something else to make me feel sooooo bad. And why can I feel almost normal at times? Could you please share your experiences with IBS/GERD/Hiatal Hernia/Gastritis/SIBO so I can get some perspective on this?

Thank you so much!!