The following is a guest post, contributed by Melissa Davidson.
Running through the 5 boroughs of NYC, elbow to elbow with 50,000 other crazies, is definitely my idea of a good time.
So, when I asked myself what would be the best way to honor my mom, who passed away from complications due to Crohn’s disease, it was a no-brainer. I told myself I would raise money for the and participate in the . I did both.
Prior to this race in November 2015, I pushed the pain of her death away by drowning my sorrows in booze and pills. I was always an active runner, but sort of a runner on auto-pilot, plodding through the miles without intention. Raising money and training for a non-selfish reason gave me a purpose.
I no longer had any excuses to fall back on. I was healthy. My mom was never healthy. is a chronic inflammatory bowel disease that affects the lining of the digestive tract. There’s no cure, but it can be managed primarily with medications. Because my mom could not properly digest food, she was also on total parenteral nutrition (), a liquid nutrition solution administered through a vein into her heart.
Her chronic bowel obstructions and intestinal adhesions turned her insides into cement over the course of 30 years. I couldn’t truly understand the physical pain she endured every single day, but I could feel it. It was no way for a person to live.
Dozens of abdominal surgeries later, her main surgeon refused to open her up again. She died before healthcare reform and before . She decided to take matters into her own hands and stopped taking her TPN. She eventually starved and her organs quit working. She was 56.
I knew faulty intestines and life-threatening obstructions would eventually kill her. It doesn’t make death any easier. I still had to understand my own . Also, eventually, I came back to myself – and back to doing what I love: running.
Along the way, I was able to raise $3,689, all of which went to CCFA (I paid my own entry fee into the marathon). My friends, family, colleagues and acquaintances made it entirely possible with their donations. I couldn’t have done any of it without them.
I don’t know what it’s like personally to suffer from Crohn’s, or something similar such as colitis,
but I do know how tough it was having a young mom who was in and out of the hospital often. Crohn’s can be very debilitating for many people.
The more understanding and compassionate we can be for others, the better. Be there to support them. Help them organize doctor’s appointments. Encourage them to talk to a counselor. Understand that seemingly mundane things to us are actually a big deal for your . My mom loved going out to eat at restaurants, even if meant an immediate, uncomfortable trip to the restroom.
She wouldn’t have wanted me to waste my time and energy on people and things that were no longer serving me. She would have wanted me to take care of myself – both physically and mentally. Was I in the best shape of my life for this race? No. Did I a break a P.R.? Definitely not. But this event wasn’t about me. It was about my mom. Her name is Pam.
I’m a traveller. Ever since I was little, my parents took me on overseas holidays, and as a teenager I caught the “travel bug”. I was blessed with many amazing trips to exotic, faraway places. If I didn’t go overseas at least once a year, I would get itchy feet!
Then I turned 30, and I got a different kind of bug. This one was called IBD. It was way more than just a bug. Medications, diets, nothing seemed to work for me. My symptoms, side effects, and anxiety worsened. My joys of overseas travel — and dream of living and working overseas — came to an abrupt halt.
(Harm Hids is a Crohnology member from the Netherlands.)
During vacation in summer 2014, my son told me, “I do not want to live like this anymore.” To hear this from your 16-year-old son is heartbreaking.
Three years earlier, he was diagnosed with Crohn’s disease. He had many, many flares. He was depressed, following a very restrictive diet, and not drinking enough fluids. At the time, he was taking Imuran and steroids.
I asked him what he wanted to do, and he suggested cannabis. He found many success stories online, and we live in (Amsterdam?), where cannabis is legal. Neither my son nor I take (or took) any drugs for recreational use.
Researching online, I found the Crohnology community, where medical cannabis is listed as very effective — in fact, more effective than prescription medications. It seemed we were on the right track, but we also learned that ‘medical cannabis’ is a family name for endless varieties and many ways of administering. We quickly dropped the idea of smoking or vaping; oil is a better way to dose.
(Rodaina is a Crohnology member from Jordan.)
I first had symptoms in 2000. In the 8 next years I suffered from stomach & colon pain, sometimes constipation and sometimes diarrhea, off and on. I thought it was normal since some members in my family have colon problems.
Then… 2009 was the worst year in my life. I had more pain in my colon, stomach & joints. I had horrible diarrhea and I started to lose weight. I barely could eat. Red swelling appeared on my left ankle, and I had fever, fatigue, vomiting, etc.
I saw many doctors and they had many opinions. They said I may have celiac disease, thyroid problems, even gout! But all the tests showed they were wrong.
In the meantime, my condition became worse than ever. Eating was painful enough that I decided not to eat anymore. The red swelling spread to all of my left leg and became purple/blue, then black. I couldn’t breathe from the pain in my colon and foot. Another red tumor appeared on my right foot. I felt crazy because I still didn’t know what my disease was.
I entered the hospital in June 2009. After all kinds of tests, the surgeon said that I have “necrotizing fasciitis”. After three surgeries and tons of medicines, my right foot was healed and the left one saved from amputation by a skin graft. It was a miracle to be able to walk again.
After my discharge in August 2009, our neighbor — who is an anesthetist at a local hospital — advised me to see an internist at the same hospital. “Maybe he will know what you are suffering from,” he said.
I went to see that doctor and after hearing my history, he requested immediately a colonoscopy, endoscopy, x-rays & CT scan. It worked. Finally I knew the reason for my illness during the past 9 years: the doctor sent a biopsy to be tested, and the results showed that I have Crohn’s Disease.
My healing process started by taking the right medicines, making the needed tests every month to avoid any unwanted side effects and having regular appointments with my internist to follow up my condition.
Having Crohn’s means that you need to learn how to live with it. If you don’t, then you’re going to suffer and fight every day without having a chance to beat it.
You can only beat Crohn’s by living with it, so I learned to live with Crohn’s. Following up with my internist, committing to my diet, and following my drawing passion… these three elements what help me to face the difficulty of having Crohn’s.
Crohn’s doesn’t affect my daily work anymore. I’m a full time worker — a hard worker, just like a normal person. I can say that I’m a healthy person now.
(If you would like to guest post for Crohnology, please see our guidelines.)
(This is a guest post by Marni Fogelson, who is a Crohnology member.)
When I was diagnosed with Crohn’s — after a difficult and often painful year — I read extensively: books, medical websites, blogs, basically anything that referenced what this disease would feel like and how it would change my life.
Of course, it already HAD changed my life, but I was looking for hopeful stories and reassurances that I wouldn’t always feel like this — “this” being horrible, exhausted, and scared of pain and embarrassment.
Although I eventually felt like I understood the physical aspects of IBD — before my diagnosis I would have been hard-pressed to tell you where my colon even was — it took me much longer to come to terms with the emotional aspects.
I felt like I had failed my body. As an active, athletic person who ate healthy and had no family history of IBD, I blamed myself.
I have two young children, one of whom was adopted from Ethiopia just a few months before my initial symptoms began. I felt like I was constantly falling short of my “good mother” expectations on days when being away from a bathroom for any length of time was impossible, or when I felt like I needed nap time as much as they did.
I worried that the life I loved, with plans for international travel and no need for medication, had vanished more quickly than I could even comprehend.
Through time — and as my disease has (knock wood) calmed as a result of medication, diet, and alternative treatments — I began to develop a healthier relationship with my body. Just as a parent learns that she can’t control her children at all times, I came to terms with the fact that sometimes my disease will act up without good reason. Worrying about it and berating myself isn’t going to help.
IBD can be mysterious and unpredictable, and so many of us try a variety of drastic changes in diet and lifestyle to keep it under control. I try not to take for granted the times that my digestive system actually cooperates, and I control the aspects of my health that I can. Letting go hasn’t been easy, but learning to relinquish responsibility has been valuable in other aspects of my life.
A few years post-diagnosis, I’d like to tell that scared woman — who doubted she would be able to travel, or chase her kids endlessly around the playground, or feel anywhere close to healthy again — that our bodies are capable of amazing things.
I know my current condition is likely to change, and that flares will challenge my mental and emotional well-being as much as my physical. But the knowledge that my body has recovered several times helps me remember that it can again come back to a place of health.
It helps me remember to have hope, and share that hope.
(If you would like to share your story, see our page on guest posts.)
It took me seven years after my diagnosis to realize that my doctor lied to me.
I had asked my doctor the same question all recently diagnosed patients ask their doctors: what can I eat, or avoid eating, to mitigate my symptoms?
His response echoed the response many IBD patients hear: there is nothing for you to do differently. What you eat has no effect on your symptoms. Unfortunately, I believed this for many years.
Trusting doctors comes naturally to those who aren’t chronically ill. Medicine, like most of science, seems to be beyond suspicion. Yet each and every patient with IBD takes a different route to the same horrifying realization: the doctors can’t help me, and I am on my own.
This is a very lonely realization, and it hit me three years ago. I then started to question my doctor’s assertion that food has nothing to do with how I feel. I tried a real food diet, eating more meat, fish, vegetables, fruits, and increasing my intake of fermented foods.
It was a remarkable difference. Seven years of medication and I never felt as good as when I started caring what I ate. Three years later I am feeling better than ever, though there is still work to do. Taking control of my health by watching what I eat was incredibly empowering, and gave me a glimmer of hope that there is a light at the end of this tunnel, even if I would have to work long and hard to find what works for me.
This post is not meant to advocate for any single diet, though I am a strong believer in the Paleo/Specific Carbohydrate Diet way of eating. Instead, I advocate for the idea that food plays a crucial role in your health. It is time to stop accepting the canard that food does not play a role in IBD.
To those newly diagnosed, I say: research about the biomolecular structure of the food you eat. Read about the health benefits of various foods. Make informed decisions for yourselves. In addition to simply giving up the foods that make you ill, eat food that is healthful.
Before you eat, ask yourselves what the health benefits are for your body. Stop eating processed junk food, no matter how tasty it is. Examine each and every ingredient.
This is easy to say, of course, but not so easy to do in practice. Beyond the obvious food cravings and social pressures that you’ll have to resist, you also have to wade through confusing and contradictory research on the effects of food on your body.
What is considered healthy? What was considered healthy a decade ago? Why is the answer constantly changing? It is enough to make anyone go cross-eyed. The subject of which research to trust could make for a whole other post — and probably a rather depressing one.
But as long as patients ask whether what they eat is healthful to them, and only eat that which they believe is healthful, they will take control of their own lives and symptoms.
With this control comes something we don’t have when we rely solely on medication: hope for a better future.
If you would like to guest post for the Crohnology blog, please see our guidelines.
(This is an excerpt from Linda Kriger’s new book, Gut Feelings: Social and Emotional Struggles With Crohn’s & Colitis.)
When I told her I was a writer, she asked what I was writing. I said I was researching a book about the social and emotional impact of inflammatory bowel disease (IBD) on people under 30.
She asked why I had chosen that topic. Years earlier, I would have deflected the question with a nondescript reason to avoid answering truthfully, but I had come to grips with the fact that secrets are toxic, so, internally, I took a deep breath and replied that I had had ulcerative colitis and my entire colon had been removed and replaced with a J-pouch to substitute for my large intestine.
The next thing I knew, she disappeared. I stood there, contemplating the awkwardness of the moment. Our brief conversation highlighted one of the central issues I address in Gut Feelings: Speak about my condition and I may alienate my listener. Don’t speak about it and I stifle who I am and what I have gone through.
In living with chronic illness, I often fall into a strange habit whereby I feel guilty for being happy.
If I show visible improvement in my health, however minor, I then have to start from scratch again when things turn the other way: produce the ‘I’m still sick’ card — which is entirely depressing, and feels like attention seeking.
This behaviour often stems from the ‘invisibility’ of our illness. Seeing is believing, after all — and some people just can’t seem to get their heads around an invisible illness. They can comprehend that God [Jon Hamm] exists, but they can’t quite seem to grasp that we have a disease that mainly exists under the cover of our skin.
OK: so these people know we can’t possibly walk around in hospital gowns 24/7 for their benefit, because that would be wholly inappropriate in high-powered business meetings; but they’d still prefer if we could make life a little easier for them. Perhaps a sandwich-board with “YES, I’M STILL SICK!” emblazoned on it? Or a tattoo across our foreheads with detailed artwork conveying our burning innards?
So as our illness is invisible, we are yet again expected to behave as patients — to conform to outsider’s preconceptions of what a ‘patient’ or a ‘person with a disability’ is, anyway. If I had a broken leg and was wearing a massive cast I’d be permitted to laugh and joke like a normal human being as you scrawled ‘FRED WOZ ERE 2015’ onto my leg in permanent marker. (Wrong leg Fred, the one with the cast, you idiot!)
But because you can’t see my disability, it can’t possibly exist — can it? And if it REALLY does, why are you laughing? You’re ILL aren’t you?
Crohn’s or no Crohn’s, people can still be mean and rude and presumptuous. It took me an almost embarrassingly long time to realise that those people are not people I want to know at all: so why should I make space for that just because we perhaps share an illness in common? It’s nonsensical. I suppose what I’m getting at is that we could all try to practice a little more tolerance.
Those without chronic illnesses could listen instead of pre-judging. Those with, could learn to use these uncomfortable encounters in which we feel judged, as opportunities to educate rather than take offence. We could take care of one another physically and mentally and pick up those who are struggling rather than getting competitive about who ‘has it worse’. Competitive suffering is one of my biggest peeves and should be eliminated from all of time and space immediately.
Now if you’ll excuse me I’ve got a fake cast I need to try and remove from my leg and a Bible based around the life and teachings of Jon Hamm I need to pen.
Photos by the author
A few weeks ago, I was sitting in a movie theater with my mom. The lights were dim. Around us, the low murmurs of quiet conversation. Everyone waiting for the movie to begin.
“So,” My mom turned to me. Lips pursed, a frown. “I read your blog post.”
“Oh yeah?” I chewed on the inside of my cheek, trying to remember if I’d written something horribly offensive or obscene. Something worthy of a Mom Frown.
It had been a pretty standard post: a semi-profound story about the chronic pain that accompanies my all-mighty bowel muncher of a disease. There hadn’t even been one F-bomb (a guaranteed Mom Frown Scenario).
“So,” I fingered at the lid of my water bottle. “Did you like it?”
[Rohith S. is a Crohnology member.]
At 64 years old, I find myself in probably the best health of my life — at least as far as the state of my Crohn’s. I believe my diet has made all the difference.
I was diagnosed with Crohn’s nine years ago, after having gut issues all my life. My diagnosis came only when my symptoms became very severe. I had lost a lot of weight and was not absorbing any nutrients. I battled flares, cramps, pain, bloody stool — but nothing I tried in the past worked any longer.
I went for an outpatient colonoscopy, was informed I had Crohns, and I was not allowed to go home because I was “very ill”. I spent 3 days in hospital — my first time as an inpatient — and stabilized on IV prednisone.