Ulcerative colitis, gastritis, GERD, reflux

Hello @barens2,

Welcome to Connect, and thank you so much for sharing your history.

I’m tagging Mentor @kdubois, and fellow members @lobste @ntp01 @yyyy @lorettanebraska @julier123 @stephieisabella @kathyannyarborough @danybegood1 @contentandwell @saucy @ptfitzy who have all talked about Nexium, managing gastritis, PPIs, and similar issues in these discussions:

Gastritis: http://mayocl.in/2qzyEqn
I'm scheduled for Nissen Fundoplication surgery @ Mayo next Tuesday...http://mayocl.in/2r7qIbY
Relentless bile reflux / pain: http://mayocl.in/2q8OWFw
I’m hoping they may have experiences to share with you.

I'd sincerely encourage you to also view Mayo Clinic's blog on Inflammatory Bowel Disease (IBD), which has videos and discussions by Mayo Clinic experts, on ulcerative colitis: http://ibdblog.mayoclinic.org

@barens2, have you made significant changes to your diet? Have you noticed whether there are certain triggers that bring on your symptoms?

Yes, I cut down on almost everything I should be cutting down on, though I tend to cheat when I'm feeling better. Gluten, dairy, have been mostly cut out, very low sugar intake, though after my gerd symptoms, thinking about losing fruit as well. The tough part is, I don't want to lose any more weight, I've lost too much as is. Doing my best to keep away from trigger foods.

I had recently been on cortisone enimas as well to better control my UC. I am now weening off those enimas, every third day, and have zero lower digestive issues, but it's like the inflammation has traveled to my upper digestive tract.

Yes stay off all the carbs! To prevent weight loss load up on protein.

Hi @barens2, I'm glad you've posted here, and I think you'll be able to find valuable guidance.

I had experienced many of the same issues and symptoms for 12 years... GERD starting in 2004, lots of Nexium/PPIs, hiatal hernia, and malfunctioning sphincter muscle between my esophagus and stomach. If I was gardening and stopped for a cold drink, when I bent over I could feel the water come right back up. I would wake up in the middle of the night choking and coughing on a mix partially-digested food and stomach acid; I would vomit and have a sore throat for hours afterward. If I didn't take a PPI, I had a constant level 3 or 4 esophageal burn, which can eventually cause cancer. The GERD even caused me to have mild asthma. (I also have IBS and all of the symptoms of UC, but biopsies have been negative thus far.)

Based on your information and questions...

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A. Surgery might be an option... a LINX or a Nissen Fundoplication.

The LINX is a magnetic device that is placed at the base of the esophagus to sort of act as the sphincter. It can't be done if you have a large hernia though, and some insurance companies won't pay for it.

Regarding the Nissen, after evaluation and testing in August 2016 by my Mayo GI doctor and members of the thoracic surgery team, last October, I had a Nissen Fundoplication surgery performed at Mayo Clinic - Rochester by Dr. Francis Nichols. This surgery corrected issues with my malfunctioning sphincter, hiatal hernia, and GERD. I now have ZERO GERD/heartburn, and I do not take any PPIs, H2 Antagonists, or even Tums. They have totally fixed me!

To determine if you are a candidate for this surgery, your GI doctor will want to perform testing. I had a endoscopy. They may want to perform a Bravo endoscopy to measure your acid levels. (They hook a tiny device to your esophagus that communicates wirelessly to a monitor that you keep near you for a certain duration. The tiny device drops-off on its own and is eliminated with a bowel movement. You take the machine back to the doctor and they download the info.) I ended up not having to do the Bravo because they could see visually how horribly-burned my esophagus was from stomach acid.

They'll want to perform a manometry to measure how your esophagus is functioning. It's very wise for them to also perform an esophagram to also see how well your esophagus functions. They will order some labs tests too, such as gastrin, to rule out even the rarest of conditions, such as a gastrinoma.

Note: You will have to cease taking PPIs, etc. for at least a week prior to all of this test. It's a rough week to live through, but it's essential to gain accurate testing data.

In the surgery, they wrap a part of the stomach around the base of esophagus. This now works as the sphincter muscle to prevent the contents of the stomach from running back up the esophagus. If your esophagus doesn't perform at 100 percent, they may want to do a 270º wrap instead of a 360º wrap.

If you do eventually have this surgery, ensure that you go to a thoracic surgeon with ample experience (many years). Sometimes, the surgeries are done too tightly, and the patient suffers afterward with inability to eat properly, pain, GERD, etc. This is less likely to happen if an experienced surgeon performs it.

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B. Avoid certain foods and eating times. Per Mayo instructions, prior to my surgery, I avoided greasy foods, peppermint, and a few others (can't recall right now). I drank fat-free milk as it's a base and it helped calm the heartburn. I ate dinner before 5:00 p.m. daily, and I slept upright using a bed wedge pillow.

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C. Regarding your weight loss from taking Nexium, I can think of two possible causes for this (though there may be others)...

1. You might be taking another drug that causes the liver enzyme in your body that metabolizes Nexium to perform abnormally. This is called a drug-drug interaction. Our bodies contain something called the Cytochrome P450 liver enzyme system. This system includes a bunch of enzymes that are like genes. These enzymes metabolize most medications. With that said, many medications, supplements, and foods can inhibit or induce these enzymes... if an enzyme is inhibited, it performs more slowly than normal making all drugs metabolized by that enzyme go through your system more slowly than intended... if an enzyme is induced, it performs more quickly than normal, making all drugs metabolized by the enzyme go through your system more quickly than intended.

2. You might have a P450 liver enzyme polymorphism for the enzyme that metabolizes Nexium. Here's why I say this... Mayo Clinic figured out why I gained so much weight (in contrast to your weight loss) after starting Nexium: genetically, I do not properly-metabolize PPIs due to a polymorphism of my CYP2C19 enzyme. I am an Intermediate metabolizer of drugs that are metabolized by the enzyme CYP2C19, and all proton pump inhibitors are metabolized by that enzyme. Based on your reaction to Nexium, though it was an opposite reaction from mine, it could still be an indication of a polymorphism for more rapid metabolization than expected, and you may want to consider pharmacogenomics testing like I had. (Mayo's Center for Individualized Medicine does this testing, as well as OneOme, a Mayo-affiliated company. Let me know if you'd like additional information.)

Unfortunately, most doctors have such a rudimentary knowledge of P450 that they are unaware of the true impact or drug-drug interactions and even less aware of P450 polymorphisms. Your pharmacist will know more.

As an aside, if you read the information that comes with Nexium, it was not intended to be used long-term, though many doctors prescribe its use long-term.

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Living with these GI issues is cumbersome, overwhelming, and affects quality of life. I hope you find this information useful and helpful, and gain some insight into a path moving forward.

~ Kelly

Thank you Kelly, that's a lot of info to digest(no pun intended).

I live in NJ, and I have seen multiple doctors, at the moment, I am seeing 2 GI's(my wife has been strongly encouraging me to get 2nd and 3rd opinions). One doctor has strongly advised me against surgery until we exhaust all options, and the latest doctor I'm seeing(out of Mount Sinai), is running a bunch of tests before I get his opinion. With the last blood test I had, my doctor suspects that I also have Gilberts Syndrome, which is I suppose one of the more minor liver diseases, but I still have no idea how that plays into it.

I'm glad to hear the surgery has worked out for you and that you are feeling well. Definitely gives me some hope.

Just to give an update, I had a manometry, and my doc has determined, with about 50-60% certainly, for whatever it's worth, that I am in the early stages of achalasia. Was wondering if anyone has any knowledge or experience with this disease. To me, it would explain going from somewhat normal, to terrible symptoms almost overnight before I started taking Nexium.

Now, my doctor wants me to take 30 MG of Nifedipine(as a calcium channel blocker), on top of the Nexium. Does that sound right? Will the Nifedipine help with the sour taste in my mouth?

Thanks.

@barens2 We appreciate the update. I was not familiar with achalasia but I did find some interesting information about it on Mayo's website, http://mayocl.in/2tcKqXQ. It appears that there are several different options for treating this disorder. Have your symptoms decreased with use of the meds that the doctor prescribed? Teresa

Hi @barens2,
There are several members on Connect talking about achalasia. You may wish to join these discussions and ask your question there too.

– Achalasia of esophagus with reflux http://mayocl.in/2cfhyny
– Achalasia http://mayocl.in/2n7zND4

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.