Caring for Crohn's & UC

Reblog: Crohn’s Kills – Warning This Headline Is Clickbait, but the Message Inside Is Important

Today’s post is a reblog from my friend Jaime’s blog Pretty Rotten Guts. Last week, one of her best friends, who had Crohn’s disease, passed away and this post was written in the days following her passing.

Last week, one of my very best friends, personal cheerleader, over-the-phone nurse, confidant, and late night infomercial watching buddy passed away. Over the past few years, she fought an extremely long battle against her body. She had Crohn’s disease. While many would argue she passed from Crohn’s disease… that isn’t exactly what took her away from us. I’ll explain.

When I was in high school, before my Crohn’s got too out of hand to maintain a regular in-class workload, I was on what was referred to as a nursing track. This freshman course consisted of learning basic nursing concepts, terminology and anatomy. I loved it. And one day we got to study diseases. Our instructor, a longtime nurse and college instructor, explained to us how sometimes it’s not a disease that kills someone but a complication from that disease.

One example she gave was of an AIDS patient who had cancer. How do you determine cause of death? Sometimes it’s as simple as saying cardiac failure. If you need to go into further detail it can be cardiac failure due to end-stage cancer or possibly end-stage AIDS depending on the symptoms leading up to the death. But unless there is an autopsy you go with the general — heart failure.

Many people over the course of this past week have asked the same questions, “How old was she?” and “What did she die from?” and I want to so badly respond the way she would.

It would have gone something like this: “… age? No.” And “… die from? Stubbornness!”

Both responses would have been uttered in a thick Boston accent, quickly followed with a laugh and a coy smile.

As for her COD, well I don’t think many who knew her would disagree with stubbornness as a cause, but in reality she was in heart failure due to a dangerous clot that eventually dislodged. The clots were caused from an infection. This infection had become her arch nemesis next to Crohn’s disease. More than likely her Crohn’s and surgeries caused by the disease led to her declining health, but it was the infection and its clots that were too much for her to overcome this time.

I along with a few friends have been on guard for most of the week anticipating people who really didn’t know our friend to start positing her face amongst purple ribbons and candles, inspirational quotes, or phrases like Crohn’s Warrior, or purple butterflies referencing flying with angels or other butterflies. She hated with a capital H-A-T-E-D that stuff. Thankfully, not too much of that has happened. However, the few who have disrespected our request to remove the purple swag have made it pretty painful to deal with.

Our friend was such a private a person that we didn’t learn of her actual age or birthday *gasp* until we caught it on a picture of a hospital bracelet that she forgot to crop out before sending it to us. She accepted defeat graciously.

I truly do not feel right typing this story out; it doesn’t feel real. Several friends have texted the question “Is this real?” over the past week, and each time I have to respond back to them, “Yes, very”.

I guess I’m writing this for two reasons — partly to diminish the denial that many of us are still feeling; as well as a way to lay the facts out while keeping her dignity intact, because so many people have questions and let their minds wander.

To put it simply we can all agree that the clot caused her death. It wasn’t just Crohn’s disease alone that took her away.

Whenever a young- and vibrant-looking person with a like disease who is somewhat known in an online health community passes it becomes a very sensitive time for all community members. Even those who didn’t personally know the person (who has passed on) take this loss very hard for their own personal reasons. Grief knows no boundaries.

These losses leave everyone (patients, as well as their friends and family members) emotionally raw; vulnerable even. It’s not out of the ordinary for them / their loved ones to wonder “Could it happen to me / them too?”

In short, more than likely it will not happen. Crohn’s isn’t known for taking lives in the same manner many terminal diseases are. Months ago, our friend made a flyby comment that she “could just as easily get hit by a bus instead.” I was neither amused nor comforted. This comment came from someone who had beaten the reaper a few times already. So, I would like to emphasize to those of you out there in our Inflammatory Bowel Disease (IBD) Community — regardless of having Crohn’s disease or ulcerative colitis — Crohn’s can contribute to someone’s death, but IBD doesn’t have a high mortality rate. It just doesn’t.

So, if you see a post online, or an article floating around that says something like “Crohn’s Kills” or “Crohn’s has taken the life of another warrior..,” go ahead and take what you just saw with a grain of salt and know that there are multiple circumstances involved.

Don’t forget to check out Jaime’s blog here.

May 29, 2015 at 12:30 pm Rebecca K. 1 comment