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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 12, 2017

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?

barens2 | @barens2 | May 12, 2017

In reply to @kanaazpereira "Hello @barens2, Welcome to Connect, and thank you so much for sharing your history. I’m tagging..." + (show)

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.

saucy | @saucy | May 12, 2017

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

Kelly, Alumna Mentor | @kdubois | May 12, 2017

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...

-----------
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.

-----------
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.

-----------
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.

-----------
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

barens2 | @barens2 | May 12, 2017

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.

barens2 | @barens2 | Jul 3, 2017

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017

@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