“Tis not so sweet now as it was before.” ~William Shakespeare (Twelfth Night, I, i)

I’ve been dealing with a health issue for the past few months.  Actually it started many years ago, but has just exacerbated recently.  Before I go any farther, let me just say that I realize many people out there are going through far worse challenges than me – physically, emotionally, financially…one of my former college roommates is going through an extremely tough time right now, having had a liver transplant and then a complete bowel removal & reconstructive surgery (we’re pulling for you my friend!).  A family member of ours has been battling breast cancer & resulting complications for a few years now, and a dear family friend’s father is also waging war on cancer.  My problems seem so minute in the light of situations like that, so I do try to keep it all in perspective.  But maybe talking about my issues can help someone else out there, and it also helps me to just talk about it and get it out there instead of bottling it all up inside.

“When you can’t breathe, nothing else matters.”  I used to say that all the time to my chronically ill patients when I was a health counselor for a disease management company.  And it’s true – everything in life is secondary to the breaths we take over and over every minute of every day.  Without them, we are nothing and we can do nothing.  It was during my second year with that disease management company that I was told I had either asthma or RAD, or reactive airway disease.  I started seeing a pulmonologist (lung doctor); I went through all the tests and started taking several medications to help me breathe better.  I went to the emergency room once, not really for an actual asthma attack but because of unfamiliar feelings of chest tightness and shortness of breath.

About a year prior to that, and just after getting home from Africa and the Peace Corps, I started having acid reflux problems (GERD = gastroesophageal reflux disease).  I rarely had the typical heartburn, but instead I had constant throat clearing (especially after eating) and I woke up a few times in the middle of the night feeling like I was choking and couldn’t get any air (which is extremely scary, but temporary due to a laryngeal spasm caused by acid splashing up into the airway junction).  I started seeing a gastroenterologist (GI doctor) and also went through all the tests for that issue, including endoscopy, a stomach-emptying test, and 24-hour pH monitoring (I only made it 12 hours though before I had to rip the very uncomfortable tube out of my nose and throat). I was told after my endoscopy that I had significant reflux and a small hiatal hernia but that it “wasn’t a problem.”  I’ve also been told I just have “bad reflux genes,” and it’s true I guess, as both my parents have had GERD issues for a very long time.

Over the past decade I’ve been on four or five different reflux medications, and as long as I’ve been on them, those symptoms were held in check.  Eventually my breathing issues also subsided and I no longer needed the airway medications.  However at no time in all those years did any doctor tell me that the two issues – GERD and shortness of breath/asthma – could be related.  No doctor ever told me that taking the GERD medications (called PPIs, or proton pump inhibitors) for years and years at a time could lead to other serious side effects.  And no doctor ever told me that certain foods, drinks and medications could make my GERD worse over the years by weakening my lower esophageal sphincter (LES), allowing my hiatal hernia to get worse, therefore aggravating both the GERD and the asthma.  I had to figure out all of that on my own.

But I didn’t do that figuring out for many years.  For a long time, I just took my daily PPI medication, and ate and drank whatever I wanted without any health symptoms at all – either with GERD or asthma.  And while I wasn’t having any symptoms, I did gain weight, which also didn’t help things.  I’d lost 50 pounds before and just after moving to Austin, but over the past few years I’ve gained 20 of that back.  And then about two years ago, I started having these weird periodic shortness-of-breath episodes where I couldn’t yawn properly or seem to get all the breath in or out at different times. 

These episodes would last a week, maybe two, and they never felt like actual asthma.  It was better at night, with the shortness of breath worse during the day and especially after a big meal.  And then it would just improve and go away, for many months at a time usually.  This happened a few times over the past two years, and I had convinced myself that it was a cyclical thyroid issue.  Shortness of breath can be a symptom of hypothyroidism, and since I had a few other signs as well, I just thought that’s what it was.  I did go to my general doctor a time or two when it happened, but my thyroid tests came out normal; so did iron, so it wasn’t anemia apparently either.

I hadn’t had an episode in quite some time, but a mere two weeks after I got back from my England trip this past summer, it started again – on August 4th.  At first it was just like the previous episodes; it wasn’t that bad, and it would come and go.  A few weeks later it seemed to be gone and I was feeling good again; in fact, I’d started to slowly start running again on the treadmill instead of just walking, interspersing the two.  And then on August 26th, I did a strenuous run on the treadmill, running for a longer distance than I had in a very long time, years even.  And I’ve been paying for that run ever since.  I had what felt like actual asthma starting that same day after that run, my shortness of breath got much worse, and it hasn’t really let up since then. 

I think this is what happened: over the past many years I’ve been eating and drinking many things that have weakened my LES.  I think the trip to England this summer may have been one of the final straws, I drank so much tea on that trip, and tea (even decaf) is one of the main items that weaken the LES (it’s the tannins, which is also why coffee is very bad for reflux).  Then during that strenuous run, I think I jarred my hiatal hernia through that weakened LES and jammed it up into my esophagus and through my diaphragm (where it’s not supposed to be).  When a part of your stomach is sticking up where it’s not supposed to, it leads to even more reflux (which I definitely started having after that run on the 26th, lots of regurgitation) and pressure on your diaphragm and lungs and heart, making breathing difficult.  I think those multiple periodic episodes over the past few years was a precursor of things to come, maybe the hernia is a sliding one and was self-correcting, until this time it just couldn’t. 

I also think I might be having another type of GERD, called LPR (laryngopharyngeal reflux), which is when you reflux all the way up into your throat either at night or during the day; when this happens, the acid and pepsin enzyme particles can make it into your airways, your sinuses, and even your ear canals.  The pepsin attaches itself to those areas, and can be re-activated over and over by any acidic food or drink, leading to more symptoms.  Those symptoms can include coughing, hoarseness, burning in throat, postnasal drip, congestion, throat clearing, shortness of breath, and many others. 

I did see a new gastroenterologist here in Austin, after not needing one for five years.  I told him all of my symptoms and told him I really hoped he could help me, that I’d been struggling for breath for weeks and had gone through more asthma inhalers than ever before (but that they weren’t helping usually).  He took the predictable (and disappointing) approach of just treating symptoms rather than getting to the root of the problem, and told me to take an increased dose of my GERD medicine twice a day, and that losing some weight would probably help.  He didn’t order a new endoscopy or any other tests but I plan to ask him for them at the next visit to confirm my suspicions above and see if the hiatal hernia needs to be repaired.  He also told me to see a pulmonologist to make sure it wasn’t just an asthma problem, so I did, and they ran all the same tests as a decade before.  The doctor there told me they did see some signs of inflammation and she put me on an anti-inflammatory asthma medication as a trial, to see if it would help, and she said that yes, it could be due to reflux.  She also said that they are starting to see a LOT of patients coming in with breathing issues related to their acid reflux problems.

I’d begun doing research on GERD and breathing issues for several weeks by this time, and was struggling not to let my health anxiety get the better of me (something I’ve dealt with for quite a while, you can read about it in a past post here).  After feeling dismissed and brushed off by the GI doctor, I decided to take my own action by implementing some serious changes in my diet and routine to try to eliminate most or all sources of acid and switch to alkaline items, in hopes that it would help and lead to better breathing and fewer reflux episodes.  To say this was a complete 180 would be an understatement.  In the course of a day or two, my diet changed radically.  I’ve also had to stop taking ibuprofen – which I’d been taking quite liberally over the past year (after not having taken it for five years before that); any anti-inflammatory medication like ibuprofen or aspirin can weaken the LES significantly, making GERD and its complications much worse (which I’d somehow forgotten about).  (And in a vicious cruel circle for people with both asthma and GERD, most asthma medications can also weaken the LES, leading to worsened GERD, leading to worsened asthma.)

What did I stop eating & drinking?  Foods & drinks I haven’t had at all in the past month that I used to have either all the time or on a semi-regular basis:

  • Tea – chai or any black, green or mint tea, regular or decaf – including my favorites English Breakfast, Yorkshire & Peppermint
  • Gatorade or any other drink (or food) containing citric acid or ascorbic acid (including Vitamin C supplements and fruit/vegetable juices)
  • Chocolate or anything with chocolate in it (the theobromine weakens the LES)
  • Cheese of any kind
  • Peanut butter & peanuts
  • Pizza, Indian Food, Mexican food, fried foods, anything with any spice in it – everything good, basically
  • Anything with tomatoes, tomato sauce, onions, peppers or garlic in it, or anything made with a cream sauce
  • Other fruits & vegetables: all citrus fruits, strawberries, pineapple, grapes, blueberries, blackberries, mango, cucumber, most corn products or anything with a corn product in it
  • Anything with mint in it (also weakens the LES): gum, breath mints w/peppermint or spearmint, my peppermint tea, etc.
  • Yogurt & other dairy products like ice cream and sour cream
  • All condiments: mustard, ketchup, mayonnaise, salad dressings, etc.

(About some items not on the list: I stopped drinking soda a few years ago, even diet soda, and I haven’t drank alcohol in years, but these two items also are at the very top of the reflux-causing list and should be considered off-limits for anyone with GERD or a weak LES [along with any carbonated drinks of any kind].  I don’t miss the alcohol at all but I sure do crave a good diet cherry vanilla diet Dr. Pepper every once in a while.  Some cravings are better left unsatisfied I guess…)

All of those items above either weaken the LES or are acidic in nature, and many are high-fat, which also contributes to reflux because they sit in the stomach longer.  The first week or so of not having any of the foods on the above list was pretty traumatic for me.  It’s been a month now since I’ve had any of them.  The last time I went one month without eating cheese of any kind was when I lived in Africa and it just wasn’t available – that was 13 years ago.  I have gone a month without eating chocolate before, during my self-imposed sugar-fasts I used to do each year in April since moving to Austin- but then as soon as the month was over, I knew I could go back to eating it.  It’s probably not going to be that way this time, and it’s pretty tough coming to terms with that.  At this time of the year, walking down the Halloween candy aisle is pure torture!

It’s very hard for me to imagine not having pizza again, or spicy Indian food (which I love), or peanut butter – which I’ve had almost every morning (on toast) for breakfast since high school, and that includes when I lived in Africa.  Life without chocolate or chips and queso from Torchy’s Tacos seems very empty and depressing indeed.  Grilled cheese & tomato soup on a cold winter’s day was the ultimate comfort, how can it be that I won’t have that again? Or cheese enchiladas with red chile?  I love all kinds of cheese, and I’m having a hard time imagining a future without it.

Walking by this at the store now makes me want to cry.

Walking by this at the store now makes me want to cry.  Seriously.

But perhaps the most difficult was having to give up tea.  I love tea, I collect teapots, I so enjoy the tea ritual in England – and how can I go to England again and not be able to drink their English Breakfast or Yorkshire or Earl Grey?  How will I get through my next cold or flu bug without a soothing cup of peppermint tea with honey?  I stopped going to Starbucks many months ago because it’s too expensive, but to not even have the option of getting their chai tea ever again? I did finally find a type of tea (after much research) that has neither caffeine or tannins (both of which cause reflux), called African Rooibus; it’s a red tea and not at all the same as the other teas I love, but it’s at least a warm cup of something.  (I can’t have chamomile or some other herbal teas due to their natural estrogenic properties, by the way.)

Glorious tea time, I shall miss you.

Glorious tea time, I shall miss you.

I know I’m healthier without the high-fat high-acid foods I was used to eating, but this is a big change that has thrown me for an emotional loop.  It’s got me pretty down, but I also feel pretty strong that I’ve been able to go a whole month so far without anything on that list above – not one piece of pizza or chocolate or cheese, not one spoonful of peanut butter.  I’ve lost eight pounds during the past month on this new regime, which doesn’t seem like a lot to me for the kinds of changes I’ve made, but I guess it’s a move in the right direction.  It shows me that it’s possible and that I can make these changes for the sake of my health.  Not being able to breathe very well is a pretty strong motivator.

So – if I cut out so much of my prior diet, what have I been eating & drinking?  Well, it’s been pretty limited:

  • Water – filtered and/or alkaline (alkaline water higher than pH 8.0 will deactivate pepsin particles)
  • African red rooibus tea
  • Almond milk, soy milk
  • Sweetener:  Honey
  • Proteins:  Almond butter, almonds, pumpkin seeds, tofu, egg whites, protein powder (in smoothies)
  • Rice (brown and white) with black-eyed peas and green peas
  • Rice cakes
  • Cereal – plain Cheerios, plain Rice Chex, plain Grape Nuts
  • Ancient grains bread, whole wheat tortillas, & whole wheat double protein English muffins
  • Snacks:  Oats & honey granola bars (made with only 7 natural ingredients), whole wheat pretzels, plain graham crackers
  • Fruit & Vegetables: Cantaloupe, pears, edamame, kale, avocado, potatoes (regular & sweet), salad (lettuce & carrots)

There aren’t many fruits on the alkaline foods list unfortunately – any melon is allowed, and pears, and sometimes raspberries.  Bananas are at the top of the good/alkaline list but their high potassium content gives me chest pain when I eat them, has for a long time, so I avoid them.  I’ve been eating a LOT of cantaloupe and pears lately; honeydew melon and watermelon would be ok too, but they’re pretty expensive right now.  Oatmeal is allowed as well, I just usually don’t have the time in the morning before work to prepare the slow-cooking kind, so I end up eating cereal and perhaps some egg whites with toast.  I cook a batch of rice with beans/peas, or roast some sweet potatoes, and that’s what I take to work for lunch most days.  Dinner is often a smoothie and some cereal or a rice cake with almond butter, or some more rice or potatoes.  It may seem like a high-starch diet, but apparently whole grains and starches are actually very good for reflux issues from what I’ve read.  (And for you non-vegetarians out there, there are other protein options on the alkaline list.)

Following this new diet did not bring me a ton of relief in the first few weeks, but I’d heard it could take a while to re-set the internal digestive system.  I had to think it was making some kind of positive difference to avoid all the “bad” acidic foods and eating much smaller portion sizes and meals, but although the regurgitation reflux was getting slightly better, I was still having significant shortness of breath, especially after eating anything more than a handful of food.  And then, three weeks after seeing the gastroenterologist MD and starting the twice daily medication, I bought some digestive enzymes at Whole Foods that I’d seen someone mention in a GERD/LPR Facebook forum.  I took the first two enzyme capsules with dinner that night, and within an hour I noticed a pretty significant difference – my shortness of breath was reduced after eating and for most of the rest of the night.

I’ve been taking the enzymes now for about 10 days.  As long as I take them when I eat, I don’t have the same degree of shortness of breath I was having before.  I do still feel it sometimes (it seems to get worse at the end of the day), but now it just seems to be there under the surface rather than a constant and conscious effort for each breath, like it was before.  I suspect that because of being on the PPIs for so long, my own stomach enzymes have been inhibited and I’ve lost much of the ability to digest my food.  So when I would eat, my food would just sit in my stomach for hours at a time, undigested, and pressing up against my hiatal hernia and the adjacent opened, weak LES, regurgitating back into my esophagus and even higher.  Then I’d eat my next meal and the meal from earlier was probably still sitting in there.  (I already knew I had very slow stomach emptying from the GI tests I had a decade ago.)  The enzymes are seemingly aiding with digestion (I had a very uncomfortable “cleansing” GI effect the first few days I took them), but they’re not doing anything to help or fix the hiatal hernia or weak LES – that is still the underlying problem, I believe. 

I am also still waking up most nights after a few hours of sleep with the feeling that I’m not getting enough air, and that I’m breathing shallowly (with my chest rather than with my diaphragm/belly) through my congested nose – I believe this is due to reflux still happening at night and getting into my airway, even though I’m sleeping on a wedge pillow (specially made for reflux) and I eat no later than 4 hours before I go to bed (which means I eat dinner very early and then have a growling hungry stomach again by the time I try to go to sleep). I’ve also had to try to get used to sleeping on my left side, which due to the position of the stomach leads to less nighttime reflux, when for most of my life I’ve been a right-sided sleeper.

I think that as long as I have the hiatal hernia which is forcing my LES open, I’ll have issues and symptoms (if that is indeed the problem).  I can manage it somewhat by following the low-acid and low-fat diet and behaviors as I mentioned above, but I’m not sure what else to do other than pursue surgery to fix the hernia, and I just don’t know if that’s the best option or not.  Then there is the issue of the PPI medication – which I feel is doing more harm than good, but with my “bad reflux genes,” am I ever going to be able to stop taking it?  I hope I can someday, and hopefully soon. 

GERD is an extremely common health issue in the US, with apparently every third person having it in some form or other.  You can’t watch more than a few minutes of TV without being pelted with PPI commercials.  It’s not insignificant, as it can lead to esophageal cancer, which is currently the most rapidly-growing cancer type in the country.  What’s even scarier is that PPI use tends to just address symptoms and not the causes of GERD, so that someone could still be refluxing for years and not even know it, but all the while still suffering damage to the esophagus and other tissues.  PPIs don’t stop all acid production in the stomach, but they do limit absorption of certain nutrients (leading to possible deficiencies like magnesium and B12) and inhibit digestive processes.

Well.  I guess that’s enough talk for now about stomach valves and hernias and breathing and acid vs. alkaline.  I wish I didn’t have the need to know all this.  Everything now seems to revolve around when I eat and what I eat and not eating too much and scheduling my activities around mealtimes.  Yesterday I went to a meeting that was a potluck and there was nothing on the table I could eat – the hashbrown casserole had peppers and onions in it, the cake was chocolate, and the juice had pineapple and spices in it.  If I can’t eat dinner by 6:30 PM, then either I go to bed hungry or I have to stay up until midnight.  Oh, and no more running for me – I’m back to just walking.

Change is hard.  I hope it’s worth it.

À la prochaine!

Ant Kristi

 

 

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