My Health Story: "What a Long, Strange Trip It's Been"
I cannot let this month pass without recognizing and celebrating that April is IBS Awareness Month! Chances are, if you're like many people with IBS, you’ve wasted years in a long and frustrating journey to get a diagnosis of IBS, you've probably had every test under the sun, you may have been told or had it implied that “it's in your head”, that there's nothing wrong with you physically because all the tests were normal. Maybe you were given lots of meds and were never told about the side effects. Maybe you were never told about dietary changes or were given a one page handout for a complex diet that you felt you couldn't possibly figure out. Perhaps you’ve felt unheard and hopeless and overwhelmed trying to figure out what to even do for this condition. I hear you, I’ve been there myself!
The GI dietitian, Kate Scarlata, has a campaign every April called "I Believe In Your Story" centered around her efforts to raise both awareness and money for IBS research (at this time, IBS research funding is pitiful). Like everyone who has health problems, you have a story that goes along with it. Your story is important and needs to be heard, and I want to hear it!
In this blog post, I’m going to share with you my story, in the hopes that you will see that we all have our own path and our own struggles. But we overcome and we cope. You are stronger than you ever give yourself credit for. Yes I’m talking to you! Now sit back, enjoy a low FODMAP cup of tea or coffee, and buckle up for the crazy ride that is my health story. To quote the Grateful Dead “what a long, strange trip it’s been”..
About five years ago, I came out in public about my IBS. At that time I became so fed up about the silence and stigma around digestive disorders. I had been through so much—through decades of suffering with this condition. My inspiration to break the silence came out of the significant relief I found once I went on the low FODMAP diet. I seriously wanted to run outside and shout from the rooftops to tell the millions of people in the world who were suffering from IBS that there was another way, that they didn't have to suffer anymore! My husband and I went on to start the first low FODMAP food company in the US (Nicer Foods) after this, because I knew how much this diet could help people, but I also knew it was fairly complicated to follow and to cook everything from scratch. It was an exciting time for us and for the world. We had huge dreams to see our foods on the supermarket shelves in the US. While we didn’t quite get there ourselves because my failing heart had different plans for us, there are other companies now (go FODY) who are doing just that!
Though I may look like an average forty-three year old woman, and have been happily mistaken for being much younger, I am anything but "normal." One of my doctors recently told me that she sees a lot of "zebras" in her practice, but every once in a while she sees a "unicorn." "You are a unicorn," she said.
What she meant is that I am "medically complicated" as I've been told many times by many doctors. I am also the queen of "invisible illnesses," and this means that I look healthy on the outside (except for many scars hidden by clothes), but my insides feel quite differently. I've had every medical test known to man through the years; colonoscopies, endoscopy, stress tests, EKGs, barium swallow study, ultrasounds, hydrogen breath tests, echocardiograms, stool tests, MRIs, Xrays, CT scans, and many blood draws.
This April 8th marked my third "valversary" as we say in the cardiac support world, or the third anniversary of receiving the two artificial heart valves that saved my life. This was my second open heart surgery, the previous was 11 years earlier when I had just one valve replaced. Every year at this time, when my valversary rolls around, it leaves me feeling reflective on my crazy journey, and grateful for this life that I too often take for granted.
I was only eighteen when I had my son, and it was soon after his birth that my heart issue was detected. I had gone to the same family doctor through my teenage years. This was back in the day when doctors prescribed antibiotics for absolutely everything. "Had a sore throat, headache, cough? No visit needed, just call Dr M. and he'll call in an antibiotic!" Hmm any relation as to why I developed IBS as a young adult?
I had just finished an antibiotic about 6 months after my son was born and felt I needed to go in to see him because I still wasn't feeling right and had developed a chronic cough. By some stroke of luck, he wasn’t there that day, so his associate saw me instead. When he listened to my heart he said, "Has anyone ever told you that you have a heart murmur?"
"Uhh no!", I said perplexed, because I just had a baby and no one had ever mentioned this during my many appointments! I had even complained about a lot of heart palpitations throughout my pregnancy. My mom had a heart murmur that didn't cause her any problems, so we assumed the same would be true for me. I was sent for an echocardiogram and met with the doctor a week later. There are some moments in life that are frozen in time that you can't ever forget. And this was one of those times—that doctor telling me that I had some disease of my heart valves and I would need to be referred to a cardiologist immediately.
As a teenager, I had always felt there was something wrong with me, but because I was young and a female, I was brushed off. I was called a hypochondriac, and told it was in my head. This is very similar to my later story with IBS, and are the exact words I have heard out of the mouths of many of my IBS patients over the years. In retrospect, I was suffering from untreated depression as a teenager too, so that plays into it, but I also just had a deep knowing that something else wasn’t quite right.
When I went to the cardiologist for the first time, I was by far the youngest patient in her waiting room. I still remember going into that appointment with my mom and the cardiologist telling me that I would need at least two open heart surgeries in my lifetime and I would need monitoring every six months from there on out. I was officially diagnosed with rheumatic heart disease, a condition that is rare in the US and especially so in someone eighteen years old. She said the damage they saw in my heart was like something they'd see in a seventy or eighty year old, and she was perplexed as to how someone my age could have gotten rheumatic fever in the first place, and with no memory or record of having had this serious childhood illness! She told me then that I was not to have anymore children, because it would be far too dangerous for my heart. This was another one of those moments where time stood still, and my life as I had always pictured it was not to be.
This was just the beginning of what became a lifetime of medical testing, unexplained health problems, and a good dose of medical trauma. There were many occasions during medical procedures and treatments where I felt like a cow being herded into a corral, or like I was watching my life as though it were a movie and not actually happening to me.
I was lucky to have a good eleven years after my heart disease diagnosis until I needed my first open heart surgery. I was finishing my internship in college and trying to be tough and act normal, but I couldn’t deny that the fatigue was crippling and the shortness of breath was severe, so much so that folding laundry left me struggling to catch my breath. I went back to my cardiologist, was sent for more tests, and confirmed that I was indeed in heart failure. By the time I saw the surgeon, he told me I needed to have surgery within six weeks or I'd likely die. It was urgent.
So four weeks after that conversation, I had my first open heart surgery and received an animal valve. Though the doctors knew there was a problem with one of my other valves too, they couldn’t repair it and didn't feel it was bad enough to be replaced so it would continue to be monitored. I knew this animal valve would be shorter lasting than a mechanical one, but I chose it because it didn’t require special meds or dietary changes. That is, opposed to mechanical valves, which require lifetime anticoagulation on a drug called warfarin, which has many diet and medication interactions.
When I had this first open heart surgery at the age of twenty-nine, the healing process was painful and difficult. I started to have a lot of unexplained body pain afterwards. It's kind of no wonder—they cut and open your whole chest; your bones, ribs, muscles, tendons, and nerves. It's a huge trauma to the body. No doctor ever talked to me about this. My heart was fixed and they didn't seem to understand my physical pain. I learned later in life that trauma can be associated with physical problems, especially fibromyalgia and IBS. I saw many rheumatologists over the years, all convinced I had an autoimmune condition that was at the core of this heart problem and all of my other symptoms that were unanswered by medical tests. But all of the tests were always, somewhat frustratingly, normal. How often have you heard that in your health journey: “Everything looks great!” yet you continue to feel like crap and have no answers? Ultimately, two rheumatologists diagnosed me with fibromyalgia, just another one of those conditions that has no great treatment options.
Between the ages of eighteen, with my valve disease diagnosis, and my early thirties after my first surgery, I began to develop new health issues. In my early twenties, I started having digestive issues which I never had before, except for occasional nausea from car rides as a kid. I assumed my digestion was out of whack because I adopted a vegan diet and was eating a crap ton (pun intended) of soy and legumes, and I thought I'd just adjust, but I never did. And I didn’t go back to normal, even after switching back to my previous lacto-ovo vegetarian diet. At some point, the constant stomach pain and frequent diarrhea began to really impact my life and my ability to be a reliable employee, so I knew I needed to get medical help. I remember distinctly going to my primary care doctor (not the same one I went to as a teenager) to talk about my digestion and I was mortified to share my poop problems with this young, male physician. He was very kind about it though. And he promptly put me on an antidepressant.
Side effects were a problem, so he tried me on a few antidepressants until I found the right one. Though they were helpful for my moods, they didn't actually help my digestion much! I saw an ARNP in his office a few times and I remember her telling me that I was bringing on the digestive problems myself because of my anxiety. I felt blamed and shamed, and as though it was all my fault. Even though the mind and gut are very connected and stress can certainly exacerbate IBS, it is absolutely not your fault that you have IBS.
Eventually I was sent for an ultrasound of my abdomen, which showed tons of gas, so they put me on a proton pump inhibitor, and told me to take Gas-x. That also didn’t resolve the problems, maybe helped a little, so I just lived with these ongoing digestive problems and put up with it, feeling miserable many days and again trying to hide it from others, including my (now) ex-husband. I knew that sometimes my co-workers could hear from across the room what sounded like my intestines eating themselves. I felt too embarrassed to tell anyone what I was dealing with though. Why are we so afraid to show others that we are suffering?
In my early thirties, I had moved to the Boston area where medical care was much better quality than where I lived in PA. By then, I had developed incredibly painful and long menstrual cycles, and I noticed my digestion was much worse during my cycles. I found an amazing gynecologist who did multiple tests and diagnosed me with adenomyosis and endometriosis which explained the extreme pain and some of the digestive issues I was having. Endometriosis and IBS are very interrelated so it’s always good to get it ruled out. Well I decided to have a hysterectomy and get that puppy taken out since I couldn't have kids anyway due to my heart problems. Best. Decision. Ever. I've never regretted that one!
A few months later though, I became very ill with bloody diarrhea, fever, vomiting, and intense abdominal pain, so I was taken to the hospital. Just the day before I had seen my primary care doctor again for this bloody diarrhea and he told me I just had a freaking rectal tear and he wasn’t too concerned. In his defense, I wasn’t nearly as sick the day I saw him, but I had told him that I knew something was very wrong. It turned out I had C.diff, which is a serious intestinal bacterial infection, a “superbug.” I was so sick for weeks, lost weight that I didn’t need to lose, and missed work. I realized it was high time to see an actual GI doctor because of the chronic digestive issues I’d had all along that still didn’t have a name or a cause. I had gotten nowhere with going to primary care doctors for it over the years. I got the name of an excellent GI doctor from a great kidney doctor I worked with at the time. I seriously scored in the awesome GI doctor department, which was evident to me at my first appointment with her. I know that many of you have had to go through scores of GI doctors to find one who listened to you or truly helped you, or maybe you are still searching. Don’t give up, they are out there!
My first visit with this doctor felt like the first time anyone had really listened to me about my digestion. She was nice and empathetic, she asked me about the kinds of food I ate, the kind of gum I chewed. Because of my recent C.diff infection, she felt it was important that we do a colonoscopy to make sure there wasn’t some missed inflammatory bowel disease. She also did lots of blood work to look for celiac and other malabsorptive issues. She sent me for a hydrogen breath test to look for SIBO (Small Intestinal Bacterial Overgrowth) and the test came back positive. Finally, something that could be treated! She gave me a drug called Xifaxan and it made a huge difference in my symptoms for a while. She also officially diagnosed me with IBS.
Unfortunately though, the SIBO did come back in time, as it tends to do, especially because I wasn’t aware of the need to change my diet at the same time. The doctor did make suggestions later about diet changes I could try. And though I was a dietitian at this point, I honestly didn’t learn anything useful in school for nutrition for IBS because there really wasn't anything then, so I was clueless. The doctor gave me a piece of paper that said “Low FODMAP diet” on it. If I had a nickel for how many times my patients have said this same thing to me! I had never heard of this low FODMAP diet before in school, so I looked it up online and quickly said “hells no” to it. I was a wheat-eating, dairy-loving vegetarian—what the heck would I eat? I couldn’t give up my yogurt and apples and beans and onions! I filed that paper with my piles and stacks of other medical records, where I wouldn’t look at it again for years.
Oh and then there were the migraine headaches. I have distinct childhood memories of seeing my mother curled in bed in a dark room waiting for these scary sounding headaches to pass. So when I was in my mid twenties and I had an episode of zig zaggy lines disrupting my vision, along with severe nausea, light sensitivity, and a monstrous headache, I kinda knew what it must be. MRIS, many medication trials, all of which had severe side effects, neurology visits, headache specialists, acupuncture, botox, cranial sacral therapy—you name it, I tried it.
Eventually, out of sheer frustration with my digestion and migraines, I did start experimenting with my diet, trying high fiber, low fiber, chocolate free, gluten free, dairy free, low carb, lactose free etc. I’d have periods of time where I felt okayish, and then I’d have major flare-ups of one thing or another and never know why. It wasn’t until much later in life that I reached my wit’s end with my digestion—my point of no return—when I thought I was going to die in Mexico. I was newly re-married and sadly it was on my honeymoon when I had the worse flare up of my life. It was then I decided I’d better look into that low FODMAP diet.
It’s hard to make lifestyle changes and something has to propel us forward to give us the motivation and courage to make a big change! The pain that we’re experiencing daily has to outweigh the pleasures. Not that there’s pleasure in IBS, but many, many people do not want to give up favorite foods and beverages, and they cling to them for dear life. Until you reach a tipping point and realize you simply cannot go on like you did before.
As I mentioned earlier, for me the symptom relief on the low FODMAP diet was rather dramatic, so I was happy to give up those favorite foods, especially once I figured out the strictest part of the diet was only short term. I learned through the reintroduction process which FODMAPs triggers me and in what quantities. I admit I waited much longer than the recommended two to six weeks to reintroduce because honestly I didn’t feel like feeling bad again, so I do understand it when my patients procrastinate this process. But for reasons discussed in my previous blog post, it really is important to reintroduce those FODMAPs and see which ones you actually tolerate because it's likely that you tolerate some.
For the first time in my life, I got to experience a few years of what it must feel like to be a “normal” person in regards to my digestion. Kind of mind-blowing after twenty years of dealing with it. Honestly, at age forty, I felt the best physically I ever had in my life. I was happy in my marriage and career, and was excited because our low FODMAP food company was growing fast and we had big plans for it. But halfway through the year, I started experiencing that familiar and terrifying feeling of shortness of breath while doing things like simply grating cheese, or walking my dog a short distance. The dizzy spells, the incredible fatigue—I recognized it but was in complete denial. When I went to my cardiologist, I remember her handing me a box of tissues as I cried in her office when she told me that both my previously replaced tissue valve as well as the other valve they’d been monitoring for years were failing and it was again time to see a surgeon.
This time, it was the “big deal” surgery as my surgeon said. Having two heart valves replaced is no joke. I had some complications too, which led to needing my whole aortic root replaced. I kid now that I am a bionic woman, with my partly robot heart. The recovery was brutal and brought me to my knees though; spiritually, emotionally and physically. Everything came crashing down. What’s more is my husband lost his job around this time, which forced us to relocate and to sell our beautiful sweet house with a view of the water and the snow covered mountains. I lost my will to live at some point in the process. Survivor's guilt arrived—why did I live when others aren’t so lucky? My recovery took every speck of energy that I had, so when the opportunity to sell our little business came along, after much agonizing, we decided to give it up, "our baby”. I had to focus solely on my recovery at that time while my husband focused on supporting us. The bright side is we couldn’t have sold Nicer Foods to a better business—one with the resources and knowledge to bring to life for our customers what we couldn't quite get to.
I had to claw my way back out from the depths of despair, and figure out my purpose on this planet again. I had suffered on and off with depression and anxiety throughout my life, but this experience was on a whole different level. I had so much pain, and the doctors told me that I had been using pain meds longer than “what was allowed by law for this particular surgery.” So I had to get referred to a pain management clinic, where I went through a comprehensive program of PT, counseling, and many medication changes. I also started getting acupuncture and massage regularly. By some grace of God, with that healing team, and with the support of the loving people in my life, I found my will to live again, and I found the strength to continue on, even though my life and my body were forever changed. If you told me then that I’d survive that experience, I wouldn’t have believed you. I never would have believed either that, nine months later, I’d go swimming in the ocean with nurse sharks in Belize, or less than three years later, my friend Michele and I would be hiking and jumping in the air with glee on the red rocks of Sedona.
I now have to live on a blood thinning medication, listen to the sound of a little clock (my mechanical heart valves) inside my chest as I fall asleep each night, be careful of my intake of Vitamin K from things like green leafy vegetables (the vitamin works against the blood thinner), and many other foods, avoid most herbal supplements, and be very cautious about any new medication changes. I have to put in a lot of effort to feel decent every single day because of all of the conditions and multiple dietary restrictions I'm managing. I have good days and bad days still. Writing this now, I cannot believe that this is my life, and that this is my story. It sounds like the kind of thing that “happens to someone else.”
Though my story is long and complicated, and I have other health problems that may have little to do with IBS, my story has themes that are so common with my patients. I didn’t tell you my story for you to feel bad for me or feel like what you’ve been through doesn’t compare to mine. Your story and your journey is yours and your experience is just as valid as mine, no matter what it looks like! Know that no matter how bad things may feel right now, you can get better, you can thrive, and you can find help and support!
It doesn't help anyone, certainly not ourselves, to hide our health problems from others. We have to start speaking out to our healthcare providers and friends and family and restaurant employees to spread awareness about IBS and dietary intolerances. We have to ask that more funds are used for the advancement of IBS research. I will never give up believing that a cure for IBS is possible.
Consider donating any amount to Dr William Chey's IBS research fund. I had the honor of attending a GI conference at U Michigan last year where Dr Chey practices and teaches. At the end of the program, I was actually a little choked up because I was so inspired by their holistic team approach, and the incredible care and enthusiasm they all shared for treating chronic digestive disorders. Everyone with IBS should be so lucky. We all need a team of providers to help us get back to our optimal health.
If there is one thing you can do if you're losing hope, it is to know you're not alone—that so many others are struggling too, and many have found answers and a team that supports them. Your job now is to reach out for help, to find your team, and to never give up looking for your answers. You can learn to thrive and live your very best life, even with IBS and multiple other health conditions. Hope is possible, and it is worth searching for!