“Thirty days hath September, April, June and November…”
This childhood rhyme played over and over again in my head this morning as I stared at the date on my phone and tried to piece together how on earth it came to be the last day of April.
I had big plans for April… plans to write up a series of blog posts about my struggle with IBS and dive full-force into my experience with the low FODMAP diet. But alas life does not always go according to plan…
Turns out, finding the words to sum up 7 years of pain (both physical and emotional), frustration, and confusion is easier said than done.
So instead, I’m sitting here on the last day of April, scrambling to form semi-cohesive sentences from years of built-up thoughts and feelings. Again, easier said than done.
Why April, you ask? Well if you haven’t heard by now, April is IBS Awareness Month. And while I wholeheartedly believe that Irritable Bowel Syndrome (IBS) is a topic that deserves year-round recognition, I couldn’t sit back and watch this month come and go without letting my voice be heard. After all, this condition has affected my life in more ways than I ever could have imagined, and I know that I’m not alone in feeling that way.
When I started this blog, I had every intention of using this space as an outlet for sharing my story with others who may be going through a similar experience. But I quickly found that putting the words on the page was much harder than I had anticipated. I would sit down to type, get about two sentences in, get frustrated, and walk away.
In hindsight, I was embarrassed. I was ashamed. But not for the reasons that one might think (hello, I’m a dietitian – toilet talk happens on the reg). Deep down, I think part of me felt like a failure and a fraud… after all, how could I feel confident providing nutritional advice to others when I was still such a mess inside myself? Looking back, this was silly, I know. But hey, I’m only human.
And today this human is here to share her story.
Chances are, 95% of you will not read this post. And that’s okay. If you’re just here for the food then feel free to jump ship and check back later. But I’m not writing this for page views or social media traffic – I’m writing this for those people out there who are frustrated, confused and feeling completely alone in their digestive struggles. I’m writing this for the people out there who are suffering in silence. And I’m writing this to remind everyone out there that a chronic medical condition is never something that you should have to just “learn to live with”.
If this post resonates with even one of you out there, then my job here is done.
Did you know that an estimated 10-20% of people worldwide suffer from Irritable Bowel Syndrome (IBS)? No? Well I don’t blame you… after all, why would you? IBS may be one of the most common chronic medical conditions out there, but that doesn’t mean that it receives nearly the amount of attention it deserves. The reasons behind this are multifactorial, but generally centered around two common themes:
- IBS is not a fatal condition, so it’s difficult to get funding for research. And even when funding is available, it’s difficult to obtain conclusive results due to the broad nature of IBS.
- Most people are embarrassed, or even ashamed, to discuss their toilet troubles with other people – even their own doctors. For that reason, many people continue to suffer in silence.
But these are exactly the reasons WHY we need to start a dialogue about this topic. After all, if those of us who are living with this condition won’t even talk about it, who will? As patients, we need to stop suffering in silence and instead let our voices be heard. Which is exactly what I’m doing today.
For those of you who don’t know, I have struggled with digestive issues for over 7 straight years now. It all started seemingly out of the blue when I was in the spring semester of my freshman year of college and began experiencing intermittent abdominal pain. As someone who had always been blessed with relatively good health, I was completely caught off guard by it all. At first, I thought it was just a weird fluke, perhaps caused by something I ate. But within a matter of months, these intermittent abdominal pains progressed into near daily occurrences. Often times, the pain was so debilitating that I wound up curled up in bed for hours at a time with a heating pad on my stomach, just waiting for it to pass.
As the frequency and severity of the pain increased, so did the scope of my symptoms. Before long, the abdominal pain had become accompanied by bloating, distention, constipation, chronic fatigue and weight loss. Over the course of the next six months, I lost close to 30 pounds.
That summer, I sought out help from a gastroenterologist back home. I underwent a series of tests (colonoscopies, endoscopies, upper GI studies, breath tests, the list goes on…) to rule out a number of different diseases and disorders. Since a vast majority of GI conditions share similar symptoms (all of which I was experiencing), getting to the root of the problem did not prove to be as easy of a task as I had hoped. But I was determined to get to the bottom of things, so I willingly obliged to all of the doctor’s orders and recommendations. All I wanted was a conclusive diagnosis… something that I could grab onto – and hopefully treat. But time after time, I was left with yet another giant question mark on a growing stack of medical records.
And with each test that came back inconclusive, I felt more and more alone. I could feel my doctors losing interest, as each appointment got progressively shorter and increasingly one-sided. I often felt like I was talking to a wall, rather than a medical professional. I knew that there was something physiologically wrong with my body, but I did not have the test results to prove it. And without cold, hard evidence, it’s hard to get anyone to take you seriously.
The following year was very difficult for me. The severity of my symptoms eventually caused me to take a leave of absence from my schoolwork to move back home and focus on my health (in the end, this turned out to be for the best since it led me to change my major and pursue dietetics, but it was still difficult to deal with at the time). My symptoms increasingly began to interfere with my social life and I found myself distancing myself from others. Several friends were lost in the process, leaving me feeling even more isolated and alone. In a matter of months, my world had been turned upside down and I still had no real answers as to why.
After months of suffering and rounds of inconclusive tests, my doctor finally broke the news:
“It’s IBS – you’re just going to have to learn to live with it.”
Not exactly the “diagnosis” or “treatment” I had been hoping for.
Now, I’m not going to lie… it took me years to finally come to terms with the “diagnosis” of Irritable Bowel Syndrome. That’s because, like many, I grew up hearing the term “IBS” tossed around lightly, often used to describe any variety of gastrointestinal symptoms for which there was no otherwise explicable cause. And, as someone who has always had a relatively high threshold for physical pain, I had trouble accepting the fact that my daily pain and suffering could be attributed to something so common (and something that is often considered to be more of an “inconvenience” than an actual illness). Not to mention, it’s hard to get behind a “diagnosis” that is based on essentially inconclusive evidence.
From the moment my condition became labeled as IBS, I felt as though I had been branded with a scarlet letter. It didn’t take me long to realize that, for many in the medical field, lack of pathology = lack of illness. I started to get the feeling that my doctors saw me as a “nuisance”, rather than a true patient. I began receiving more and more and more recommendations for psychologically based treatments, as opposed to physiological ones. I was placed on a number of medications (including anti-depressants to “help with the abdominal pain”) and shuffled out the door.
Fast-forward six or so years later and not a whole lot had changed. In the time that had passed, I had seen two separate gastroenterologists (along with several other specialists), and been proclaimed a “medical mystery” by nearly all of them. And while I had discovered a few tips and tricks for managing my symptoms through diet and lifestyle, none of them addressed an underlying problem. Essentially, I had learned to “live with my condition” – just as the first gastroenterologist had suggested.
But that all changed when I attended a local dietetics association meeting back in the fall. It was at this meeting that a local gastroenterologist shared some of the recent findings and developments from Mark Pimentel (one of the leading IBS researchers) and his colleagues at Cedars-Sinai Medical Center. The focus of the talk centered on the relationships between IBS, the gut microbiome, and Small Intestinal Bacterial Overgrowth (SIBO).
For two hours, I sat in awe and disbelief, trying to wrap my mind around what I was hearing. After years of being ignored and dismissed, research was finally starting to support what I had believed all along to be true – IBS is REAL condition that stems from real, physiological dysfunction of the GI tract. Not to mention, a physiological dysfunction that could potentially be TREATED. I left that meeting, ran to my car, and immediately sobbed for about 20 minutes straight.
To this day, there are still a lot of unanswered questions surrounding my condition. A lot of inconclusive tests. And a lot of medical bills. But, after years of living in pain and discomfort, I am finally starting to get some answers. I am currently working with the gastroenterologist that spoke at the dietetics meeting to get to the bottom of things once and for all. I have immersed myself in the literature and research surrounding IBS and, as a result, feel a renewed sense of hope for the future. It’s still a matter of trial and error, but at least I feel like I’m starting to head in the right direction. I will save all of the details for another post, but at this point I’m just continuing to take things one day at a time.
Lack of pathology is one of the driving reasons behind the IBS stigma – and one of the primary barriers that IBS researchers are hoping to someday overcome. While the true cause of IBS remains unknown, I am happy to report that significant progress is being made. Thanks to Dr. Pimentel, there is now a blood test available (IBSchek), that is able to diagnose IBS by testing for a specific antibody that is indicative of GI dysfunction. Additionally, there are breath tests that can detect Small Intestinal Bacterial Overgrowth (SIBO) – one of the most common causes of IBS. A number of treatment options are available for those with positive test results.
Bottom line: IBS no longer needs to be a diagnosis of exclusion, nor does it need to be something that you learn to live with. Talk to your healthcare professional about the developing research on IBS and explore your options together.
If you’re one of the millions of people suffering from IBS, then I encourage you to let your voice be heard. Instead of hiding behind your symptoms, share your story with others and help to bring awareness to this condition. IBS is not something that anyone should have to “learn to live with” and by bringing awareness to this topic, we can help researchers to get the funding needed to find a cause, and a cure, for this condition. Advocate for your own body and your own health. Do your research (based on scientific literature, not Google searches!), talk to others, and let your voice be heard.
Kate Scarlata, a fellow RD and digestive health expert, recently launched the #IBelieve in your Story inititative to raise awareness about IBS and SIBO. Share your own story using the hashtag #IBelieveinyourStory to be part of this movement and help to bring awareness to this condition. Together, we can find a cause – and a cure – for IBS!