Ulcerative colitis, gastritis, GERD, reflux

Posted by barens2 @barens2, May 11, 2017

Hi all, first post here.

I was diagnosed with Ulcerative Colitis in 2009, and I had been able to keep it under control with Liadla and Canada. Fast forward 4 years to 2013, I started to get some horrible esophagus spasms/GERD/indigestion...you name it. I tried just about everything over the counter, natural remedies, and even a few prescription drugs, until my doctor finally prescribed me 80mg's of Nexium, which eventually worked. I was able to reduce that amount to 40 mg's a day, even tried a few times going down to 20 mg's a day(over the counter) of nexium.

After a setback with UC, I am now on Humira, Uceris, still on Lialda and Canasa, along with trying different probiotics and glutamine.

Within the past few months, I've been getting a very sour or metallic taste in my mouth. After an endoscopy, 2 months ago, my doctor said there was some mild gastritis going on.

Now, within the past week or two, the bad taste seems to be getting worse and much more consistent, with some minor burning in my throat, along with discomfort in my upper stomach. I can feel things going downhill, and I'm sure my doctor is going to double my nexium intake. Ever since I started the Nexium, my weight has been dropping considerable, and I've had a difficult time putting it back on.

Not sure what to expect in response, I guess, for a long time, I've been worried about the affects of Nexium long term, but at this point, not sure I have a choice.

Was wondering if surgery were an alternative, what's out there, and does surgery eventually eliminate the need for these PPI drugs?

Thanks

Interested in more discussions like this? Go to the Digestive Health Support Group.

Profile picture for researchmaven @researchmaven

Regarding the ache in your legs...I would have that but for walking and stretching. I really need to stretch my leg muscles to feel good. I went to a physical therapist who gave me some stretching and range of motion exercises to do.

Osteoporosis is okay so long as you don't fall. Work on your balance and stay limber.

My friend reduced her carb intake, ate healthier, lost weight (like your 40 lbs or more) and her acid reflux disappeared. Hopefully you are on your way to that.

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Thank for sharing the information and it has been helpful and I appreciate sharing this information. Sometimes I feel like I need to talk to someone who may have the same experience and this is helpful.

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Profile picture for shooei @shooei

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!

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I can totally identify with your situation. I have high blood pressure as well as high heart rate probably because of this GERD but I also have asthma so who knows? I live in Florida and there is a lot of mold here consequently. Is that the type of lung infection you had? Also how did they diagnose it correctly?

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Profile picture for clarita47 @clarita47

I was of diagnosed with larger hiatial herina when I was 59 . After many doctor visits and many hospital stay, one doctor had recommended that I see a gastroenterologist and had colonscopy to find I had large hiatial herina and was given medication and diet to follow. I lost 40 pounds and felt better. after years of depending on medications for GERDs and Hiatial herina, I started to have other health problems and had to have a pace marker because my pulse was too low. Doctor said it is because of age. I was 73. I have asthma since I was little and now go to get allergy shots and also have problems with blood pressure and take three different medications a day for just blood pressure. I now have osteoarthritis and I just retired in 2021. Now I have problems with ache on my legs. I can not take pain killer medications. I take Pantoprazole twice a day and use carafate when needed for reduce acid reflux. I want to know if acid reflux cause high bleed pressure?? or make asthna worse?? with large hiatial herina??? does stress cause it to become worse???

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Per Dr. Google yes indeed blood pressure correlates with G.E.R.D. I myself notice that even when I take a PPI within a short period of time my blood pressure goes down.

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Profile picture for mgm223 @mgm223

I can totally identify with your situation. I have high blood pressure as well as high heart rate probably because of this GERD but I also have asthma so who knows? I live in Florida and there is a lot of mold here consequently. Is that the type of lung infection you had? Also how did they diagnose it correctly?

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My lung infection is caused by a bacteria (nontuberculosis micobacterium avium) and it was diagnosed by a pulmonologist with a CT scan.

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Profile picture for shooei @shooei

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!!

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hi shooei. my name is Pam , I have very similar issues with my gut ..seems like when I eat it gets worse. it feels like someone has their fist under my chest around the rib area. and it just gave me shortness of breath along with a feeling of tightness .. very uncomfortable feeling to say the least I’ve had abdomen sonograms ,, an endoscopy about 2 1/2 years ago they only found a small idol hernia,,which now became bigger, was noticed in the CAT scan of the chest last August of 2023. I also have Mac/bronchiectasis very similar to you for the past 41/2 years no antibiotics yet I do the same as you airway clearance, Salene nebulizer my question is, have you found any solution to this problem? drs don’t seem to know. 🙄 if you could respond back, I would greatly appreciate it. Hope you’re feeling better. my username is p1000 , I’m not very good with email or texting but I really hope you respond back. Thank you and have a great day. 😎 🤙🏻🙋‍♀️

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Profile picture for shooei @shooei

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!!

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This is my seventh year in a row now getting GERD at this time of year. I have tried a lot of things too but nothing seems to help. For me I don’t have any pain when I lay down at night.

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Profile picture for calannie @calannie

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?

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Low FODMAP is not no fruits and veggies, just certain ones should be avoided. I have figured out onions and garlic are the worst for me. There is an app called FODMAP by Monash that is very helpful and even tells you things like tablespoon of peas are ok, 1/4 cup is not, etc.

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This is odd. For years had chronic morning nausea from my issues of GERD and UC. All of a sudden I wake up to aches and pain in my chest. Went to doctor and it is not my heart. If I take tylenol I feel better. Any ideas what may be going on? Thanks

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Profile picture for mikejjb123 @mikejjb123

This is odd. For years had chronic morning nausea from my issues of GERD and UC. All of a sudden I wake up to aches and pain in my chest. Went to doctor and it is not my heart. If I take tylenol I feel better. Any ideas what may be going on? Thanks

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Esphogus?

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Profile picture for mikejjb123 @mikejjb123

This is odd. For years had chronic morning nausea from my issues of GERD and UC. All of a sudden I wake up to aches and pain in my chest. Went to doctor and it is not my heart. If I take tylenol I feel better. Any ideas what may be going on? Thanks

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Acid in your esophagus

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