Digestive Health and Healing: My Story (Part I)

If you know me personally or you've kept up with my blog, you know I've struggled with my digestive health for years. Over the last few months, I've received a lot of questions about how I healed my gut, what my diet is like now, and how I've managed to maintain a stable weight for almost two years. I decided to write a two part series about my story. Part I will outline the health struggles I've experienced, and Part II will outline tips, tricks, suggestions, and all that good stuff.

Disclaimer: I am not a medical professional or a registered dietician. Everything I write is merely my opinion and what's worked for me. I really hope some of you can benefit from this post, though.

MY STORY

It all started in high school. My stomach hurt almost every morning, which often made me late for class. My pediatrician diagnosed me with IBS, which is a common disorder that causes abdominal pain and discomfort. However, my parents were concerned enough to make an appointment with a gastroenterologist. He ordered an endoscopy, which didn't show anything unusual. But based on my symptoms, he diagnosed me with idiopathic gastroparesis (delayed stomach emptying). Gastroparesis is a disorder that slows or stops the movement of food from the stomach to the small intestine. The vagus nerve controls the stomach muscles, and in many cases of gastroparesis, that nerve is damaged. Symptoms include nausea, vomiting, bloating, and early fullness. There's no cure for gastroparesis, but it can typically be managed with medication. I was told to order Domperidone from Canada (a motility stimulant that isn't FDA approved in the U.S.), and I took 80mg/day for the next six years. I was also on a low dose birth control pill.

2014

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Domperidone worked for me...throughout college, at least. I still had symptoms, but I was able to live a pretty normal life. Right after my 23rd birthday, however, everything changed. My nausea and stomach pain became severe, and I could barely eat. Over the span of three months, I lost 30 pounds. I made an appointment with a new gastroenterologist for a second opinion, and he ordered an endoscopy, a colonoscopy, an ultrasound of my abdomen, extensive bloodwork, and a gastric emptying scan (which is the gold standard used to diagnose gastroparesis, but the results are often inaccurate). Once again, everything came back normal...even the gastric emptying scan. I knew something was wrong with my body, but my gastroenterologist told me it was just a bad case of IBS. Needless to say, I went back to my original gastroenterologist. My primary doctor wasn't helpful, either. When I told her what was going on, she accused me of having an eating disorder. I felt so hopeless after that (and immediately got a new primary doctor). If the medical community didn't believe me or know how to help me, who would? Soon after, I realized I had to take matters into my own hands. I joined digestive health message boards, reached out to others who were also struggling, and wrote down medications I wanted to try. One medication was Mirtazapine, an antidepressant that doubles as an appetite stimulant. My new primary doctor agreed to prescribe 15mg/day, and after two weeks, my appetite returned in full force. I was finally able to eat without nausea, and I regained the weight I had lost. I thought I had found my miracle drug.

For eight months, I lived like there was no tomorrow. I traveled, ate dozens of doughnuts, lived in Seattle for a few months, got a new job, and started to believe I was out of the woods. However, my health plummeted again right after my 24th birthday. 

2015

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My first ER visit occurred on Memorial Day. I hadn't been able to eat or drink in six days, and I could barely walk. I felt like thick tar was sitting inside my stomach and throat. I remember trying to drink juice and feeling miserable after only two or three sips. The ER doctor gave me a "gastroparesis cocktail", but it didn't help. My symptoms expanded beyond debilitating nausea and stomach pain and included painful bloating, acid reflux, abdominal cramping, extreme fatigue, dehydration, brain fog, lightheadedness, dizziness...the list goes on and on. At my lowest weight, I was 79 pounds. My doctors didn't know what to do. They told me to drink Ensure, but that only made me feel worse. My gastroenterologist gave me an emergency endoscopy with a botox injection, but it didn't relieve any of my symptoms. In fact, nothing helped. I had to stop taking Domperidone because it was giving me heart palpitations, and my body had become immune to Mirtazapine. I ate Zofran like candy because I was nauseous around the clock, but it did nothing. My gastroenterologist ordered a CT scan of my abdomen, an ultrasound of my gallbladder, more bloodwork, and a hydrogen breath test. Everything came back normal, except for the hydrogen breath test. My results were positive for SIBO (small intestinal bacterial overgrowth), which added another perplexing layer to my digestive issues. SIBO interferes with digestion of food and absorption of nutrients, and it damages the cells lining the small intestine. Coincidentally, gastroparesis causes SIBO. When food digests slowly and sits in the stomach/small intestine for too long, it begins to ferment...which causes a surplus of bacteria. After half a dozen trips to the ER due to crippling nausea and pain, my gastroenterologist suggested I seek treatment at a university hospital that had better resources for my condition.

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My ex-boyfriend, Kyle, was my rock during this time. He rolled me around in a shopping cart to buy groceries when I was too weak to walk. He knew all my medications and helped me stay on track with them. He calmed me down during countless panic attacks, and he was by my side during every single doctor's appointment and ER visit. So after my gastroenterologist's suggestion, we made appointments at Johns Hopkins, Wake Forest, Mayo Clinic, Cleveland Clinic, and Medical University of South Carolina. I eventually decided to pursue treatment at Johns Hopkins.

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It took months to get an appointment with the Motility and Neurogastroenterology unit. I had been sick for almost five months, and I was in a very dark place. I spent my afternoons receiving IV fluids at my gastroenterologist's office, and I spent my nights fighting unbearable nausea and forcing myself to eat a few hundred calories. My entire life revolved around the fact that I was sick. I just wanted to get better. I wanted to live a normal life. I was physically and emotionally exhausted. So when I finally visited Johns Hopkins, I was desperate for help.

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I'm honestly amazed I was able to process anything from that first appointment. Not only was I malnourished and suffering from permanent brain fog, I was also covered in red, itchy hives from head to toe. I tried to taper off Mirtazapine way too quickly, and my body freaked out (I continued 15mg/day after that because I was too ill to deal with withdrawal symptoms). The basic gist of the appointment focused on a goal to figure out the root cause of my gastroparesis. My motility specialist referred me to a rheumatologist, a cardiologist, and a neurologist for a full physical because he wanted to figure out what was going on below the surface. After a year and a half, I had finally found a physician who wanted to dig deeper. I left that appointment feeling better than I had in months.

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My rheumatologist tested me for every autoimmune disease under the sun, but everything came back normal. My cardiologist discovered I have a heart murmur, but it wasn't a major concern. My neurologist, however, gave me another diagnosis that explained some of my health problems. The infamous tilt table test revealed that I have dysautonomia, specifically POTS (postural orthostatic tachycardia syndrome). This disease is widely misunderstood by medical professionals, but it basically means your heart rate and blood flow are totally out of whack. You know that scary feeling when you stand up too fast and you get lightheaded and your heart races? That's what POTS feels like all the time, except with nausea, headaches, fatigue, and heat intolerance piled on top. There's no cure for POTS, and treatment options are limited.

After I got these results, my motility specialist advised me to undergo a comprehensive GI transit study (which would analyze my digestive system from start to finish) at Johns Hopkins. I was tired of being poked and prodded, but I figured testing was the only way to get more answers. The results showed slight esophogeal dysmotility, which basically means the muscles in my esophagus don't always work properly. This explained why I often felt like food was stuck in my throat. 

After that visit to Johns Hopkins, I was supposed to do even more testing with my local gastroenterologist. It was endless. However, I suddenly started feeling....less miserable. In fact, I started feeling better. My nausea subsided, and I was able to eat more. It felt like a heavy weight had been lifted from my stomach. Does it sound like a miracle happened? Because that's how it felt. I've been trying to pinpoint a specific link for years, but there doesn't seem to be one. I hadn't yet made any major changes to my life or my diet that could've explained my improvement. I was dumbfounded...but ecstatic. Despite feeling significantly better, I still looked skeletal and sickly. My weight was dangerously low, and I still couldn't eat enough to gain. But I finally had a better quality of life, and I was filled with relief, gratitude, and joy.

2016

After I had been feeling good for a few months, Kyle and I jumped on the opportunity to travel. I still hadn't gained any weight back, but I had a brand new "now or never" attitude about life. We went to Los Angeles, San Diego, backpacked around Europe for six weeks and had the time of our lives. Over the next year, my health steadily improved...but I knew I needed to make some drastic changes to my lifestyle in order to gain weight and start feeling like myself again. I'll talk more about that in Part II.

Outlined below are the many prescription medications I tried while I was sick. And in just a few days, I'll publish the second part of my story.

MEDICATIONS

  • Domperidone: This prokinetic relieved my nausea and helped stimulate my digestion for years, but it's now linked to ventricular arrhythmia and cardiac death. Despite this, my doctor told me it's relatively safe in low doses. I still take the lowest dose possible from time to time, but only if I'm having a really bad stomach day.
  • Reglan: STAY AWAY FROM REGLAN. It's one of the only legal treatment options for gastroparesis, but it comes with a black box warning because it can cause tardive dyskinesa. I received IV Reglan in the hospital once, and it made me restless, jumpy, and anxious. I literally wanted to rip the IV out of my arm. 
  • Erythromycin: My gastroenterologist wanted me to try this antibiotic because it also stimulates motility, but I ended up in the hospital with an inflamed colon. 
  • Zofran/Phenergan/Compazine: None of these antiemetics helped my nausea. They each came with a variety of unpleasant side effects, too.
  • Sancuso Nausea Patch: This didn't help my nausea. It was also extremely expensive because it's typically used to treat cancer patients undergoing chemo.
  • Busiprone: My second opinion gastroenterologist thought I had functional dyspepsia, so he prescribed Busiprone to relax my digestive system. It only made me lightheaded and dizzy, which ended up with yet another ER visit.
  • Xanax/Ativan: Both of these prescriptions helped relieve my nausea, but they can only be used occasionally (and you have to pick one or the other). I can physically feel my stomach relax when I take them. They soothe epigastric pain and make it easier to eat.
  • Prednisone: I took this drug for a few weeks after itchy hives covered my face and throat and landed me in the ER. Some patients on prednisone experience an increased appetite and weight gain, so my doctors hoped it would have that effect on me. It didn't.
  • Mirtazapine: This truly was my miracle drug for about a year, but my body became immune to it. I still think it's worth a shot if you haven't tried it yet. However, withdrawal is no joke if you take it an extended period of time.
  • Marinol: Medical marijuana is a wonderful treatment option for many with digestive issues. Unfortunately, it didn't work for me.
  • Xifaxan: I took this SIBO antibiotic for just one day, and it made me sick as a dog. I was literally shaking, breaking out in cold sweats, and dry heaving for hours. This is typical of a die-off reaction (when the bacteria in your gut begins to starve and toxins are released), but I couldn't handle the nausea. I was already struggling to eat a few hundred calories each day, and any further weight loss would've resulted in a hospital admission and a feeding tube.

Do you sense a pattern here? Prescription medication rarely helped me. Most of the time, it only made things worse. Right before I started feeling better, I decided to adopt a more holistic approach to my health. After almost a decade on birth control, I stopped taking it. I threw out all my antiemetics, and I flushed various painkillers I had been given in the ER down the toilet. The only drug I kept taking (and only because I had to) was Mirtazapine. I also kept my Xanax prescription on hand for emergencies.

Stay tuned for Part II!