Monday, December 2, 2019

{Crohn's Awareness} :: #IBDvisible

It's the first week of December, so that means it's Crohn's and Colitis Awareness Week!

This year, their campaign is #IBDvisible, attempting to increase disease familiarity. Here's a handy little graphic to share my IBD story :)


I am an IBD patient.
I have Crohn's Disease, which is an Irritable Bowel Disorder. It is an incurable disease that causes chronic inflammation in the gastrointestinal tract. My body mistakes harmless bacteria for foreign invaders; so my immune system tries to defend my body against helpful microbes by mistake. This leads to the chronic inflammation. While diet and stress can aggravate Crohn's, they do not cause the disease.

I wasn't familiar with IBD before being diagnosed.
I feel like that's pretty common with IBD. That's why we need to raise awareness! When I was in the hospital, my GI suspected Crohn's, but I didn't know what that was {and I didn't even know how to spell it haha!}. But then the tests came back positive for Crohn's, so I found myself diving into the IBD world, learning as much as I could about this disease and how to manage it.

It took 20 months to be diagnosed.
I marked this as when I started experiencing symptoms. I didn't actually start looking for answers with a doctor for about 16 months. I had seen a doctor of internal medicine, had several tests done, and cleared out a case of H. Pylori. I had been referred to a GI, but never made it to that appointment. I was only a few days from my scheduled appointment when Mike found me on the bathroom floor, curled up in the fetal position. So we called the office, and the GI had us meet him at the hospital that day, where I was diagnosed.

My most debilitating GI symptoms include...
...constipation, rectal bleeding, and abdominal pain. Thankfully, since I have been in remission, I have not experienced these symptoms in several years. But I remember these symptoms being a part of my daily life for almost 2 years. And at the time, they were incredibly debilitating. It was difficult to function on some days, and I lived in a chronic state of pain.

Other symptoms that trouble me include...
...fatigue, low energy, and decreased appetite. I feel like these have followed me, even into remission. Of course, the fatigue and low energy could also be due to having 3 little ones running around, but I had that before kids. So I can't fully blame them. But I do think they are related to my Crohn's. While I am in remission, I am not cured, so I think that my body is still fighting that immune response, fighting off that inflammation. And the decreased appetite is just part of life now. I rarely feel hungry, so I have to force myself to eat regularly. I felt hunger again during my pregnancies, but now that I am a full year postpartum, I have reverted to the lack of feeling hunger. 

The aspects of my life most affected by IBD include...
...the cost of my medication. I meet my deductible every year during the first month because of the cost of my medication. If I didn't have insurance, I would pay the amount of my deductible every month. So while it is a pain to have to always have that money ready in January, I am incredibly thankful for insurance. And in the grand scheme of things, this is really not that big of a deal. I think back to that agonizing pain before my diagnosis and subsequent remission, and I remember how that affected my whole life. How I felt that day affected whether I went somewhere, could make it through work, or simply get things done around the house. With the help of my medication {costly as it is}, I can live a normal life, pain free! And that is an incredible blessing, that I hope not ever to take for granted.


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