Wednesday, June 6, 2018

Gastritis: When Weight Loss Isn't Healthy

Whew. Where do I start? You may have noticed my contributors have somewhat taken the lead when it comes to posting on here. 1. - Thank goodness for them. And, 2., there is, of course, a reason for this. I'm going to share a small piece of my own life here. Something that I don't do very often. But I really think sharing this may help someone.  Because I know when I was in the thick of this journey, I turned to the internet for help. When my doctors couldn't give me answers or advice, other blogs and online forums did. So this post is going to be super informal (not that I'm ever really "formal") and me just "talking" to you all about my experience in hopes of reaching someone who is just as confused as I was during the start of this.

As you can tell from the title, I have gastritis. My years of using aspirin and ibuprofen to treat migraines have finally caught up with me. My stomach lining is damaged and I am now being treated with medication and a very restrictive, bland diet.  It's definitely no fun, but nothing compared to the months (yes, months!) leading up to my diagnosis.

It started mid-December. My husband and I went on one of our rare date nights to see a movie and grab food. During the movie, I ate popcorn and candy (Treat yo'self!) and noticed that I felt a little pain in my abdomen and a bit of nausea. I do have IBS so I initially thought that it was acting up even though I hadn't eaten any trigger foods. I brushed it off. We went out to eat. I got nachos. And, again, nausea and pain. But more intense. I, again, brushed it off.

The next day we were visiting my in-laws, and after drinking a soda and having some chips (real clean diet, you guys) I felt a more intense nausea with pain. Something was wrong. This wasn't my IBS. I could tell. I remember feeling a feeling I felt when I was pregnant with my son.  That baby moving feeling. But it was in my far left, lower abdomen. What? What is that? (No one has been able to explain what that part to me to this day.)

Initially, I thought what most of us ladies think.  Did my birth control fail? Am I pregnant? Took a pregnancy test (I am the only one who does this first before going to the doctor for basically anything?), not pregnant. Ok...Well... I have to go to the doctor.

I go to my primary. He's super confused about the baby moving feeling - "You're not pregnant?" Nope. Orders and gets me into a CT scan that day. The results come back. Mesenteric adenitis. Basically, my lymph nodes in my abdomen are a little swollen and there's a lot of them showing. Ok. So intestinal infection. Antibiotics and I should be good, right?

In theory, except every antibiotic he put me on gave me awful side effects. So I ended up going back to the doctor nearly every day that week to get my prescription changed. I then develop a fever. While on antibiotics. My doctor thinks its a UTI (it wasn't) and switches my antibiotics. The weekend comes, the pain is worse. I still have a fever. I feel much worse. I end up going to the ER.

They do blood tests. Can't find anything. Can't find any sign of infection. Don't know what is going on with me. But switch my antibiotic to a massive, MASSIVE dose of an antibiotic I know my system likes (and it makes my skin glow on top of it).  And I basically hope this is the end of this.

In the meantime, I can't eat anything. I mean, I'm literally living off of water, baby food (literal Gerber baby food -sweet potato and veggies), and bread. It's Christmas. My family is Italian. And I ate baby food and bread during the usual Christmas feast. It was not a good time.

I can also barely finish the baby food without feeling overly full and nauseated. I finish the antibiotics and I am not getting better. The pain is still happening. The nausea is worse. And by now it's the beginning of  January and I've lost 15lbs. 15lbs of unintentional weight loss. I had some lbs I wanted to lose so I'm not super concerned about the weight loss at this time, but I am aware this is not healthy. And this is something I need to address asap. So I make an appointment with a GI.

My GI has retired. So I had to find a new one. I go into the appointment. He basically says I am still recovering from an intestinal infection (which to this day, I don't really know if I ever really had. Remember, blood tests showed no sign of infection) and that it's taking me a long time to recover because I already have a sensitive system (IBS) and it's probably all thrown off. He sees my "very strong" (his words) family history of colon/rectal cancer and orders a colonoscopy.

Ok... so I give it another couple of weeks. I feel worse. Still surviving on baby food and bread. Nope. Go back to the GI. He orders another CT scan. The CT scan still shows mesenteric adenitis. Hasn't changed at all. All of those antibiotics... did nothing. Awesome.

I do the prep for the colonoscopy. I've had one before so I'm not worried. But the prep I've used in the past (basically huge pills that taste like salt) causes kidney damage so it's not used anymore. I have to use the liquid. It tastes like bile. And was way too harsh for my sensitive system. I only kept down half of it. But colonoscopy happens. Comes back normal. So that's good.

Now it's February. I go back for my follow up. I've lost 20lbs total. I'm concerned. I also am having reflux which I've NEVER experienced before. Not even while pregnant. He diagnoses me with GERD. Basically, it's acid reflux disease. Gives me a PPI, tells me to come back.

The PPI works. But I start getting intense pain in my legs. I look online, it's a rare side effect of the medication. I call the doctor. He prescribes me Zantac. And I experience PPI rebound. Basically, because of how PPI medications work, my body is now producing more acid off of the PPI than it did before I ever started the medication. I look up information online and learn all of the awful long-term side effects that come with PPIs. And how difficult they are to quit if you are on them for a long period of time. Rebound can last up to 3 months. Luckily, mine only lasted a few days. I was only on the medication for a week and a half.

While all of this is going on, I started feeling shortness of breath, pain in my chest that radiates to my back, and tightness in my chest (and sometimes in my throat). My husband takes my blood pressure and pulse. My pulse is in the 120s. Resting. Not normal for me at all. My normal resting pulse is in the 60s or 70s. I end up feeling awful one night. Go to the ER. My pulse is in the 140s. EKG has a minor abnormality on it. Lots of blood tests show nothing. Chest x-ray shows nothing. They can't get my pulse down. I'm laying in bed and it's jumping between 100 and the 120s. I'm admitted to the hospital overnight. I do an echocardiogram, stress test, more blood tests, and they can't find anything wrong with my heart. They monitor me the entire time. My heart rate is still in the 100's to 120's resting. But they release me the next evening and tell me to see a cardiologist. So I start seeing a cardiologist.

(Also sometime within this period, my ears hurt all of the time. And I start seeing an ENT- get tests and a ct scan done there- but that's way too much to get into for this post.)

I get side effects from the Zantac. Aching in my joints. No. This time I do my research and decide I want another medication in the same class of Zantac. I do not want another PPI. He gives me a once a day dose. It doesn't work halfway through the day. And I am prescribed another PPI.

This entire time I'm trying to live my life. Take care of my son. And still working from home. I'm still eating bread and baby food. I can now tolerate crackers and a few other things. But I'm losing weight. And the new PPI is now giving me intense headaches that then trigger migraines. Daily.  During a visit to the cardiologist, I realize I've now lost 25lbs. I make an appointment with the GI.

This is the part when I get scared. It's March. And I can't stop losing weight. It's not like I had a ton of weight to lose to begin with. I'm freaked out. I can't control the weight loss. (It seems like a perk - the weight loss- but when you can't STOP it... it gets real scary real fast.) I still feel awful. I can't find a medication that my body will tolerate and I'm seriously doubting my diagnosis of GERD.

I decided to write down all of my symptoms and concerns and give it to the GI. His first reaction "You've lost 25lbs?!" I'm thinking "Yes, this is not a look" referencing my clothes that are now too big on me. He's concerned. Thinks I may have a stomach ulcer. I elect to have an endoscopy.

While waiting for my endoscopy date, I visit the cardiologist. And in this time I have been put on beta blockers and then gone off of them because- SURPRISE - side effects. (The made my ears ring. Less than 1% of people get this side effect. Yay me)  My heart rate is still elevated all of the time. My blood pressure is low-normal (normal for me) and they can't figure out why my heart rate is so high. Those around me are trying to be helpful and ask if it's anxiety. I start feeling a little frustrated because I've had anxiety my entire life (seriously, my first memory of an anxiety attack happened when I was on the playground at preschool), I'm very familiar with the feeling of general anxiety, anxiety attacks, and panic attacks. And because my cardiologist ruled out anxiety in the beginning - "If it was anxiety, your blood pressure would be up too. It definitely would not be low or low-normal like it is."

The people around me are trying to help and I'm in such a bad spot with my health that I'm starting to have very little patience for anything.  And mentally, I'm not in a great place. I'm pretty miserable. And feeling like I'll never get better. I envy the other moms I see at drop-off at my son's school who are able to just go about their day...and feel like they can easily breathe. Or eat. I feel like I can't keep up with daily life and like I'm always in one doctor's office or another. My health is such a large focus at this point, that I feel like it's overtaking the rest of my life. I feel like I'm not getting to live any of the other parts of my life. And I feel like I'm flailing when it comes to taking care of my family, maintaining friendships, and keeping up with work. My entire life has become new medications, going to multiple doctors, and being confused as to why I don't feel better. At this point, I can't even imagine how people who live with serious chronic illness do this. (And I still can't imagine.) Because, putting things in perspective, my GI issues and high heart rate are nothing compared to what some people go through daily.

Somewhere around this point I start to connect that the tightness, pain in my chest and shortness of breath happens an hour after eating and when I'm not on acid reducers. I also start taking my heart rate after eating and realize that's when it's at it's highest.  I wonder if my GI issues are causing my heart rate issue.

 I go on a 24-hour heart monitor.

I do the endoscopy. My stomach lining is damaged and inflamed. I have gastritis. Finally, I know whats going on. By this time he has already switched me to that H2 blocker (Zantac-like medication but not Zantac) that he had me on once a day - to twice a day. It's somewhat working. I still get breakthrough symptoms. But it's bearable. I go to a follow up appointment and basically it's a "this should heal. It will take some time. But for some people it never completely goes away" situation. Also, within this time, I've been given and directed to try a ton of different supplements by family and friends. ("Have you tried to treat it naturally?" is the question I always heard.) But I was always scared to try them because I didn't know exactly what they were. And on top of my gastritis, I also have sensitive intestines. So... I take ALL of the supplements people recommended to my doctor. There were literally 10 to 15 bottles. He goes through them one by one. All of them but 2 were either a fiber or laxative. Fiber and laxatives would've upset my IBS. There was a zinc/ pepsin supplement that he was eh about. And a licorice one that he said I could try but it may give me side effects. At this point, I'm done with side effects so no. He tells me most of his patients swear by apple cider vinegar and though he doesn't understand it, he's heard it enough to start telling patients about it. (I'm still too nervous to try it.)

I end up looking up gastritis diets online to figure out what I can/should eat. I had lost almost 30lbs at this time(I've gained back a little bit of weight since then.) And definitely wasn't getting the nutrition I needed. More on the gastritis diet in a bit.

So end of March. I go back to the cardiologist. Heart monitor shows normal activity minus my heart rate being high. No rhythms. Just tachycardia. He doesn't think it's due to anything with my heart. I ask if it could be related to my gastritis. Possibly. He prescribes me medication to take "just in case" I have a day that's awful (I haven't taken it) and tells me to continue following up so they can monitor it.

And that's basically where I am now. The gastritis diet forces me to eat pretty clean since my stomach literally can't handle anything super processed, spicy, fatty, rich, fried... you know, all of the deliciousness we really shouldn't be putting into our bodies anyway.

I figured out the shortness of breath, chest pain/tightness is my body's version of heartburn. I don't get the typical burning feeling, I get that. I guess my body knows that if I just felt burning, I would continue to eat whatever I wanted.

I can't have dairy, carbonated drinks, garlic, tomatoes, alcohol, caffeine, coffee (decaf or not), chocolate, citrus, or anything acidic. Which as it turns out, is a lot of foods you wouldn't suspect. (Even apples and grapes are too acidic for me.)

So what do I eat? Basically plain grilled or rotisserie chicken, plain grilled salmon, cooked veggies like green beans, corn, carrots, most bread or crackers (unless they have garlic), melons, bananas, oatmeal, egg whites (egg yolk has too much fat for me), fennel tea, shortbread cookies.

Over time I am now able to eat pancakes, some sugar cookies (some are still too "rich" or sugary I guess).

I've found Kaffree with almond milk "creamer" as a substitute for coffee.

Carob as a substitute for chocolate

Almond milk as a sub for milk.

I can also tolerate fruit roll-ups and glazed donuts, strangely enough.

It definitely forces me to not put junk into my body (no more soda, chips, or candy). And also to be more aware of what I'm eating.  I check the ingredients on EVERYTHING now before eating. Whereas I rarely did that before.

I still have breakthrough symptoms. I still have days where the shortness of breath, tightness in my chest and throat happen. And my body will eventually adjust to my medicine to the point where it will no longer work. But right now it's tolerable. And I'm happy to not be where I was a few months ago.

In conclusion, health... Ya don't realize just how lucky you are to have it... until it's threatened.



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