IBD
Everyone with Inflammatory Bowel Disease has a story to tell. Some of us have more to tell than others. Some of us are reluctant to tell our stories because of the nature of the disease. But we all have our own journeys with IBD that we live out and navigate.
There has been a lot of buzz on social media lately. It all started with a young woman named Kathleen Baker who “overcame” Crohn’s Disease and became an Olympic Swimmer. It’s a great story. And hers isn’t the only successful story out there, but right now, hers is in the forefront.
Many people have complained about this story. Saying it sends the wrong message… as if you should just be able to “get over” your disease. This mindset is frustrating for many living with IBD day in and day out. Some are having trouble just rolling over in bed. I know because I’ve been there.
Some say that these success stories depress other patients who all but live in the hospital. I can definitely see how this can be upsetting to some patients. Absolutely. We know that not everyone can have a “normal” life when they live with IBD. Not everyone can get up and check their mailbox… much less become an Olympic Swimmer.
Every IBD patient’s journey is different. Each one comes with its own set of struggles and challenges. There are patients who are forced to live on disability because they’re too sick to leave the house and get a job. There are patients who are in and out of the hospital and ER. There are patients who’ve had multiple surgeries … and there are patients with surgery on the horizon.
Again, no two patients are alike and we all have our stories to tell.
I believe that even the “successful” patients deserve for their voices to be heard. IBD isn’t always doom and gloom. And if we just give those “success” stories a chance, we might be surprised by what we learn.
Take my mother for example. She has Crohn’s Disease. She is a successful woman. She put herself through college, has a steady job, bore 5 children and is now very athletic and participating in 5Ks. But she hasn’t always been so healthy. At 18 years old she was hospitalized with appendicitis and had to have emergency surgery. During that surgery, it was found that she had Crohn’s Disease and they removed 8 inches of her colon. She developed an infection at the incision site and developed gangrene. Two weeks later, my tough-as-nails mother hobbled down the aisle and married my dad.
I would also consider my own story to be one of the “successful” ones. I have a steady job. I have a husband who loves me. I have two cats who are a complete mess and spoiled rotten. Right now, I’m doing very well as I live with my J-Pouch. I have my moments obviously. J-Pouches really aren’t ideal next to a fully-functioning, healthy colon… but I love where I am at this moment in time. People see me today and they don’t know the pain I endured during my years with UC. For the longest time, my husband was married to a sick wife who couldn’t get out of bed. I was always heavily medicated on Prednisone (which as you know, causes a plethora of other problems). I was extremely sick when the time came for me to have surgery. My hair was thin, my joints ached, I had moonface for my sister’s wedding photos and hemorrhoids the size of grapes. I couldn’t get any relief.
When I finally did have surgery, I had to be hospitalized only a couple of weeks after going home and I developed a large abscess wound in my incision and two smaller abscesses on either side of the large one. I had many nights of tears. Many nights of pain. Many nights wondering if I would ever get through it. But I did. And no matter what trials or pain life throws at me in the future, I know I can get through that, too.
So why am I saying all this? Because I believe that people need to hear the good, the bad and the ugly sides of IBD. This world isn’t just filled with successful IBD stories… but neither is it only filled with really terrible horror stories. There can be and ARE stories in between. I believe all of our journeys are worth hearing and telling. Don’t be quick to judge someone else’s story. You don’t know what they’ve been through or what they’re still going through. Let’s try to understand each other and be respectful that just because your story doesn’t play out the same way someone else’s does, doesn’t mean their stories aren’t valid.
It is so important to hear the whole spectrum of stories, especially for those newly diagnosed who think it must be a death sentence. They need to know that there are some of us who manage a normal life, with some concessions to the disease. When i was diagnosed my husband, children, froends and family all thought i would die, I was so sick. Thanks to meds, lifestyle and job changes to alleviate stress I lead a very fullfilling life. I teach special needs children, am a wife and mother. I am active dragonboating once a week and participating in races, i just finished my first 2km. Sure i still have bad spots and we need to play with my meds, but it is so much better than i thought it would be when i was first told I had crohn’s.