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 Inflammatory Bowel Disease (IBD) Support Group.

Profile picture for jwkelly72 @jwkelly72

What is your weight and body fat, the lower my weight from cancer the more easily I get cold. My body fat is non existent which is an issue for insulation. I'm 130 plus of just hydrated muscle. You need a proper combo

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Thanks for the information. Dont know body fat but i could use a few more pounds. At night I sweat like crazy sometimes and therefore lighter the next morning.

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Profile picture for mikejjb123 @mikejjb123

Thanks for the information. Dont know body fat but i could use a few more pounds. At night I sweat like crazy sometimes and therefore lighter the next morning.

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Yeah, I had night sweats when I first started chemo. Add to it being so light and wearing such heavy clothing to sleep and stay warm had me waking up soaked.

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Profile picture for mikejjb123 @mikejjb123

It seems I am always cold. Yes have Gastritis and Gerd. Crazy sitting with sweatshirt and long pants when 90 plus outside. Yes, can turn down ac but doesn't matter. Ideas? thanks

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@mikejjb123
Sorry to hear that you are dealing with gastritis and GERD. I have had episodes of that a few times- makes me feel miserable in general.
Low thyroid hormones was mentioned already - good idea to have that checked.
I have experienced circulation problems, also feeling cold- especially cold feet. After I got a new aortic valve I’m warmer in general.
What stands out in your case is night sweats- I hope you have a good primary care doctor who can go over all possible causes.
You shouldn’t have to feel so cold all the time.

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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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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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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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Stress is a huge factor in our health. Google the Brain and Gut Connection. The stomach is considered the second brain. Our thoughts affect our stomach as we may unconsciously breathe shallower or even feel like we have stopped breathing. Learning breath work to calm yourself when you start feeling stressed is very helpful to bring you back to a state of calm. Breath work can be learned through meditation or by reading up on the different ways to breathe for calmness. It works.

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@mikejjb123
Sorry to hear that you are dealing with gastritis and GERD. I have had episodes of that a few times- makes me feel miserable in general.
Low thyroid hormones was mentioned already - good idea to have that checked.
I have experienced circulation problems, also feeling cold- especially cold feet. After I got a new aortic valve I’m warmer in general.
What stands out in your case is night sweats- I hope you have a good primary care doctor who can go over all possible causes.
You shouldn’t have to feel so cold all the time.

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Thanks!

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Profile picture for gigi4 @gigi4

Stress is a huge factor in our health. Google the Brain and Gut Connection. The stomach is considered the second brain. Our thoughts affect our stomach as we may unconsciously breathe shallower or even feel like we have stopped breathing. Learning breath work to calm yourself when you start feeling stressed is very helpful to bring you back to a state of calm. Breath work can be learned through meditation or by reading up on the different ways to breathe for calmness. It works.

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I wonder how to create a habit of breathing. I can only think of setting my smartphone alarm.

Even pleasant excitement -- seeing the new Mission Impossible movie -- triggered IBS.

I wish there was a way to sever the brain-gut connection for pleasant and fun stress.

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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???

Jump to this post

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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Profile picture for researchmaven @researchmaven

I wonder how to create a habit of breathing. I can only think of setting my smartphone alarm.

Even pleasant excitement -- seeing the new Mission Impossible movie -- triggered IBS.

I wish there was a way to sever the brain-gut connection for pleasant and fun stress.

Jump to this post

These are two meditation apps I use: Headspace and Insight Timer. They both teach deep breathing - how to inhale and exhale - as well as teaching you how to become aware of your bodily sensations and mind interaction. It is worth the effort but it takes consistency to get results.

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Profile picture for mikejjb123 @mikejjb123

It seems I am always cold. Yes have Gastritis and Gerd. Crazy sitting with sweatshirt and long pants when 90 plus outside. Yes, can turn down ac but doesn't matter. Ideas? thanks

Jump to this post

I find I am wearing a sweater no matter how hot it is. But, at least it isn't painful. Some consequences of eating the wrong item are painful.

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