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 thesage @thesage

Hello Rozy288:

I have found that applying as much scientific knowledge to my own health care as possible is extremely important when dealing with internal imbalances. I recently wrote a book that you may find helpful, in addition to the medical tx you are receiving. It's called, My Tea Taste Better: Improve your life by understanding what makes you tick, by (me) Rena Johnson. It's about how our body's functioning is impacted by our emotions and the hormones those emotions cause to generate. Please pick up a copy of my book at Amazon.

Best wishes!

Jump to this post

I tried everything, holistic, RX, supplements, diets, etc. I’m a medical mystery.

REPLY
Profile picture for thesage @thesage

Hello Rozy288:

I have found that applying as much scientific knowledge to my own health care as possible is extremely important when dealing with internal imbalances. I recently wrote a book that you may find helpful, in addition to the medical tx you are receiving. It's called, My Tea Taste Better: Improve your life by understanding what makes you tick, by (me) Rena Johnson. It's about how our body's functioning is impacted by our emotions and the hormones those emotions cause to generate. Please pick up a copy of my book at Amazon.

Best wishes!

Jump to this post

Wow that’s great . I’ll have to check it out on Amazon or local library! Thanks

REPLY
Profile picture for hobbity @hobbity

Hi all , yes i have gerd hiatal hernia IBS and diverticulosis. I'm the same where my horrible symptoms seem to come a day after i eat anything suspect . Bloating gas upper chest pain , the anxiety comes along as well . I was on 60mg dexilant for a couple of years but my doc cut me down to 30 mg because it can cause malabsorption i guess over time . Was off it for quite awhile but now back on it with a vengeance. Waiting for my doc appt on March 12th , probably send me fpr another series of scopes. Been 8 years since i had them . Everyday is a crap shoot as to how I'll feel . No vitality at all . I envy people i see out and about having lunch , enjoying their life . Just want to live a life !

Jump to this post

I have the same. Feel crappy on a good day. Nauseated all the time. Grateful to have poops most days with Amitiza. I have IBS C. Anything u take for gas and bloating. I too have been on and off PPI.

REPLY
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!!

Jump to this post

Hi, new to this whole format. Been reading your stories and can't believe there are so many of us suffering with these issues. I've had a sensitive digestive system most of my life. The last 20 years in and out of doctors offices, tests, meds I know are bad for me but I've been forced to take them. Sometimes they help. I even had a hiatal hernia repair along with a Nissan Fundiplication 2 years ago all to no avail. Can't remember the last time I laid flat in a bed or didn't have chest pain, gut pain, Bloating and wicked gas! I'm so sick GERD and feeling sick. I too exercise, don't drink or smoke or do drugs and am considered in good shape. Well at least on the outside I can fake it, my insides suck! I have sores in my mouth and a coated tongue again from a dry mouth at night. Yes I wear a strap to keep my mouth closed but it's still like the Sahara desert in there. Have a doctor's appointment in a couple of weeks and will be asking if it's possible I may have Sjogrens syndrome. Seems lack of saliva can maybe be causing some of this. I'm desperate to find a reason. Thanks for letting me vent.

REPLY
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!!

Jump to this post

I have or have had all except IBS.
I took or take the following:
1. SIBO - antibiotic treatment from GERD doctor.
2. Pain, nausea upper quadrant- gallbladder surgery
3. Bloating/constipation- Atrantil, Gas-X, probiotics
4. GERD - PPI 40 mg. Also sleep with wedge
5. Chest discomfort/swallow- diagnosed with presbyesophagus. It's a hypomotility contraction issue - take 20 mg of amitriptyline at night. Doing alot better including GERD.
6. Dry eyes, mouth, & nose - Tested positive for COVID and has made everything worse. Being tested for Sjogren's. I was already on Cequa, warm compressions. and moisturizing eye drops on a daily basis

REPLY
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!!

Jump to this post

Wow! your problems are much more severe than mine. I have been treated for SIBI, Candida and excess histamine growth although none of the providers I have seen - mostly functional medicine types- have come up with a clear Dx. My itching is generally confined to my scalp and forehead. I had to give up booze because it made me itch really bad. Two weeks ago the APRN was seeing told me that she had no idea where my itching came from. I only know that my diet of oatmeal and blueberries for breakfast, eggs, egg whites and toast for lunch, a protean shake mid afternoon and some kind of chicken and veggies for dinner helps me from going nuts.

REPLY
Profile picture for jackielb @jackielb

I have or have had all except IBS.
I took or take the following:
1. SIBO - antibiotic treatment from GERD doctor.
2. Pain, nausea upper quadrant- gallbladder surgery
3. Bloating/constipation- Atrantil, Gas-X, probiotics
4. GERD - PPI 40 mg. Also sleep with wedge
5. Chest discomfort/swallow- diagnosed with presbyesophagus. It's a hypomotility contraction issue - take 20 mg of amitriptyline at night. Doing alot better including GERD.
6. Dry eyes, mouth, & nose - Tested positive for COVID and has made everything worse. Being tested for Sjogren's. I was already on Cequa, warm compressions. and moisturizing eye drops on a daily basis

Jump to this post

Another person who contacted me suggested taking the True Test Patch Test. Expensive- $1500- though mostly covered by insurance. It takes 5 full days with patches placed over the entire back torso for 5 days. After the test his eczema (three different types) has been in remission for five years and his Chronic Lymphocytic Leukemia disappeared without treatment over 15 years ago without explanation or any treatment or change of diet. Also recommended the Yeast Connection handbook by Dr. Crook resulting in he's eliminated dozens of positive contact allergens. I am going to try the TTPT. Good luck.

REPLY
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

Jump to this post

I am on blood pressure meds too but I think it may be all the other meds I take for my issues. Any ideas? thanks in advance.

REPLY
Profile picture for mikejjb123 @mikejjb123

I am on blood pressure meds too but I think it may be all the other meds I take for my issues. Any ideas? thanks in advance.

Jump to this post

in reply to @mikejjb123 Are you by chance anemic? I too have ulcerative colitis, but know that the source of my dizziness is due to my chronic anemia. I have also been prescribed Propranolol for migraines, although I understand it is also used to treat high blood pressure, which is not my case. This drug does make me dizzy at times.

REPLY
Profile picture for mikejjb123 @mikejjb123

I am on blood pressure meds too but I think it may be all the other meds I take for my issues. Any ideas? thanks in advance.

Jump to this post

Thanks so much. It seems my is due to anemia too!

REPLY
Please sign in or register to post a reply.