Crohn’s Disease

Illness Army: “The Bad, The Good, The Funny”

I say this a lot, but I am truly blessed to have made some wonderful overseas friends along this health and writing journey. One of my friends, and member of the My-Stomach-Doesn’t-Work-Club is Kara. Kara’s blog is full of, and I quote directly from the author herself,
completely unfiltered, and poorly edited posts. At its core, it’s a space of brutal honesty tempered with a bit of humor and realistic positivity 😉

When I am having a really awful day, her blog is the one I run to.
She can somehow spin a positive, humorous light on every shitty situation (and I mean quite literally shitty). She is worth a follow and would definitely appreciate the chat.

My story is quite common, although I didn’t know it in the beginning. I was ill for years before finally being diagnosed with Crohn’s Disease, which basically means my intestines think it’s groovy to cannibalize themselves. Leading up to my diagnosis my symptoms were blamed on anything from food allergies to depression. I wish I could report that after diagnosis life got easier, but Crohn’s was only the beginning. My body is collecting diagnoses like trading cards and hasn’t given me the hint that the deck is full yet. Treatment for one condition can, and usually does, exacerbate another so it’s based on which disease will cause the most damage in the short-term. It’s annoying, frustrating, and makes hiding in a hole sound quite appealing. At the worst of times, I’d like to be struck down by lightning or taken out by space trash. This is not how I imagined my life would be, and learning how to reinvent myself in the face of these challenges is the biggest struggle of all.
The good news is that I’m a better person because of it. I’m slightly more patient, less controlling, and I have a freight train’s worth of empathy. I don’t sweat the small stuff, which has made me a better partner in the emotional sense. Losing independence can be completely demoralizing and dehumanizing, but the single most important thing I’ve learned is to ask for help when I truly need it. I still push myself whenever I can, but knowing I have a lifeline has improved my stress level significantly. I can’t do everything I once could, and spent countless hours depressing the hell out of myself by focusing on all of those things I’m no longer capable of. This obviously got me nowhere, so instead I try to focus on the things I can do. I still grieve for the person I was, and I don’t suspect that will ever change. Some days (weeks, or months) are more difficult than others, but it’s all part of the process and that part does get easier with time.
I didn’t forget how to laugh and that has probably saved my life. Having the ability to find humor in awkward and inappropriate situations is oddly satisfying. I laugh until I cry, and sometimes cry until I laugh. Laughter is my favorite drug. The best thing I can say about myself is that I somehow retained my sense of humor throughout all of this, and let’s face it, Crohn’s alone gives me some pretty good material. Once you can laugh off crapping yourself in public, the world is your oyster.
How a person deals with their illness is as individual as the disease which afflicts them. It’s okay to be depressed, pissed off, or lost. As scary as it can be, know you aren’t alone. Life has a way of handing out shit sandwiches, but sometimes you can find a really nice person who’s willing to share a cookie if you’re open to it.

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Illness Army: “Life Of A Crohnie”

Living with Crohn’s disease can be complicated, often times many people overlook the symptoms that don’t revolve around the bathroom. They don’t realize the complications that can come with the illness and the medication. The commercials for Humira or Entyvio don’t really give you a realistic outlook at what it’s like with Crohn’s. They don’t show you curled up in a fetal position in pain, the first time you freaked out seeing blood in the toilet, the amount of time you spend on the toilet, they don’t show all the diet restrictions, the joint pain, the anxiety and depression. They really don’t prepare you for getting diagnosed yourself.

It took over 6 months to get diagnosed, but being only 9 I think the words hit my mother harder than they hit me. I didn’t really understand any of it. It fell on her. When you get diagnosed I think the first question everyone asks is, “Is it curable?” And it doesn’t do anything for your nerves when they tell you it is not. They will tell you your options such as pills, biologics, surgery, so forth. They do not tell you that you will miss a lot of school or work.

They never expected me to miss my prom or senior year, or that I would be stuck at home for college because I was recovering from my ileostomy surgery where I spent my 18th birthday. They didn’t tell me that after missing so much time at school, people would stop to care and would eventually move on and replace you. They didn’t tell me that people would make jokes about my illness, or my prednisone puffy face, or that the joint pain would render me helpless some days to the point where I would become dependent on a cane or wheel chair.

They smile and tell you that remission is possible; they don’t tell you that once you achieve remission that if your health waivers even the slightest the anxiety of it all will creep back. They don’t tell you that when you fall out of that remission you will miss the life you briefly had.

So when you get your diagnosis, it’s okay to be sad and upset because they won’t tell you about it, it’s okay to go to therapy to have someone to talk to because you are going through a lot and will be going through a lot for a while. Make sure you have a good support system, and understand your limits because some days you will feel good and other you will need to rest, and that’s okay. Even if all you do is manage to get up in the morning and take your medicine, you are still worthy if love and acceptance.

This post was submitted by one of my new favourite bloggers, Grace, from https://theecrohniegrace.wordpress.com/ 
Grace’s blog is about her life with various Chronic Illnesses. She has Crohns, Gastroparesis, Joint Hypermobility Syndrome, and is also being tested for Classical Ehlers Danlos Syndrome.

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