I’ve been sitting here contemplating Crohn’s Disease for the last few hours…breathing deeply from the new essential oil diffusing necklace I’m wearing that I infused with frankincense and lemongrass, having just finished eating a frozen glob of coconut oil mixed with a heaping teaspoon of glutamine and KetoBroth protein powder, and sipping wine–of course (hey, it’s fermented)–and wondering where I should start with this post.
Image: Semicolon; The Adventures of Ostomy Girl (2015)
Crohn’s is pretty much always on my mind…sometimes the center of my thoughts, but usually just lingering somewhere in the background (is there a bathroom nearby, do I have food to eat, how long will I be gone, how am I feeling…). A few hours ago, however, I was scrolling through Facebook and saw a news article in my feed about a young woman, age 28, who passed away on Sunday due to complications from Crohn’s Disease. She had a small bowel transplant about two years ago, which her body rejected. The transplant was removed this year and she suffered complications and infection, which led to her death.
Stories like this seem to bring the universe to a halt for me. It’s the reality of what I’m fighting against every single day to prevent from happening to myself. Crohn’s can certainly affect people in different severities, but I’m constantly reminded that nearly 75% of Crohn’s patients will have at least one surgery in their lifetime and that number can rise to 90% when a person has had the disease for over 20 years. I’ve had it for 10. Surgeries don’t cure Crohn’s, they just seem to be a slippery slope leading to more surgeries and more complications. For those on immune modulating or immunosuppressant drugs, every germ is a threat. And, drugs don’t always bring complete relief, often just a lessening of the symptoms and possible side effects down the road.
Crohn’s is often referred to as a hidden illness. Many of us who suffer with it simply hide it beneath our smiles or retreat from social gatherings because, how do you politely tell your friends you don’t want to go out because you’re having horrible pain, gas, cramping, and uncontrollable bloody diarrhea or you’re worried about the food you might eat and whether restrooms will be available. There you have it my friends, if you didn’t know already, that’s Crohn’s in a nutshell.
But, back to the article I read. Dana Marshall-Bernstein suffered with a severe case of Crohn’s since she was a child. Most of her small intestine was removed, she had an ostomy bag (and countless surgeries to go with it), and she received her nutrition from an IV. She worked to raise awareness for Inflammatory Bowel Disease (Crohn’s and Colitis) and didn’t let the disease control her life. However, it did slowly eat away at the quality of her life and she shared her pain of spending more and more time in the hospital and slowly growing sick of being sick in the documentary: “Semicolon; The Adventures of Ostomy Girl” (2015). Which is available on Amazon, and which I immediately rented and have already finished watching.
Image: Semicolon; The Adventures of Ostomy Girl (2015)
In a way, it was hard to watch the video, which documented her life leading up to the decision to have the bowel transplant, knowing that she died Sunday as a result of complications from that rejected bowel transplant. Inflammatory Bowel Disease is still not completely understood. It’s an inflammatory response of the immune system, attacking anywhere from mouth to anus–start to finish in the digestive system–that many doctors believe has genetic, microbiome, environmental, and autoimmune components.
As you know, if you’re reading my blog, I’ve been trying to control my Crohn’s for over a year and a half now primarily through diet. To be honest, it scares me every day that my dietary approaches will one day fail me and I’ll have to write a post about why it didn’t work–but, I’ll cross that bridge when I get there. As the title of my blog implies, this has not been a smooth and easy journey. Just over the last couple of weeks (if you’ve noticed the radio silence), I’ve been fighting a mild flare up and have been flooding my digestive system with kefir, sauerkraut, and bone broth and am starting to pull through…in a week or so, I’ll share the full experience in another post.
I’m still optimistic and truly do believe that diet has some impact in this disease; 70% of our immune system is in our gut, so how could caring for our immune system not help this disease? That’s my train of thought, anyway. Hopefully, 10 years from now, I’ll be writing my 1,000th post about how successful this journey has been.
Crohn’s is a complicated disease. I take satisfaction in knowing that my gastroenterologist is somewhat surprised every time I walk into his office as the picture of perfect health–great labs from my blood work, healthy weight, fit, and happy with no gastrointestinal distress. His other Crohn’s patients are not doing so well and some suffer greatly. I am lucky to have a doctor who supports me in what might be seen as a crazy experiment, but he keeps close tabs on me and I have the GI Clinic on speed dial, just in case. In my last colonoscopy done for dysplasia surveillance, along with my surgical pathology notes he wrote, “Hope the fermented diet and cabbage continues to be so favorable.”
So, today’s reflection was really one of awareness. As I write more and more for this blog, I’ll eventually share more of the nitty gritty and shitty details of this disease 😉 For now, I simply want to help spread Dana’s message for IBD awareness. I encourage you to rent the movie on Amazon for $2.99 and watch it; it’s incredibly well done and gives a glimpse into the lives of those who suffer with Crohn’s. I’m continually amazed at the number of people I meet who tell me, after I tell them I have Crohn’s, that they have a family member with it, know someone who has it, or has Crohn’s themselves.
I know my methods and story won’t help everyone, but maybe it will help someone.
Keep fighting, my fellow #CrohnsWarriors; this post is #ForDana.
Image: Semicolon; The Adventures of Ostomy Girl (2015)