Being in the hospital with Crohn’s disease is miserable.
But before I get too negative, I have to confirm one major benefit to having an ostomy and being hospitalized: it’s a lot easier to give stool samples now. I don’t even need a toilet!
Anyways, while a lot of us who have chronic diseases often laugh it off or put on a happy face, and post to our social media accounts, it’s a slog. It’s not fun. You think long and hard and try anything and everything to avoid a hospitalization—and sometimes the stress you get from that makes the situation even worse!
This is the happy veneer I usually choose to share with the world, and I hope it encourages others going through struggles like mine.
But, like the character Eliot Alderson in the popular show Mr. Robot, I often put on this 'happy social media mask', even though the reality of the situation is not as pleasant and smile-inducing.
The truth is, the night before the above post I was laying in bed crying during a 103.8°F fever spike. The next night, I had to get a lumbar puncture to make sure I didn't have bacterial meningitis. The next day I cried a little after the nurse said I'd be going to the ICU after they suspected I could have sepsis. And after I finally got home, I had to go back to the hospital another day for a blood patch, to fix up a severe spinal headache induced by the earlier lumbar puncture!
You have a right to be confused. To be sad. To cry. To curl up in a ball in your hospital room and wonder why this is happening to you. I do it a lot.
I’m blessed with a compassionate and understanding family who know Crohn’s is a chronic disease and it’s not ‘my fault’ I have it. I have friends who text me messages of prayer and support. I have faith that helps me cope with the suffering and pain (sometimes in ways better than the drugs can do!). And I have my optimism and sense of sarcastic humor that lightens up my mood and helps me feel better.
I can laugh or cry. Sometimes I laugh. Often in private, I cry. But both are helpful.
If I laughed everything off, I wouldn’t take this disease seriously. If I cried all the time, I could get depressed.
I hate Crohn’s disease. I hate being stuck in the hospital another weekend.
If you have Crohn’s or IBD or some other chronic illness, I want you to know it’s perfectly fine to have these feelings. But it’s an illness you can live with. It’s not fun, but it’s doable. Sometimes you’re pooping for the fifth time in an hour and you're missing a party (raise a glass of Miralax for all the missed holiday parties this month!). Sometimes you can’t get the job you want because you just can’t do it while having Crohn’s.
But you soldier on. You try the next treatment. You look to the next day. You keep up whatever hope you have. You talk to the nurses and doctors, and empathize with them, as they so often empathize with you.
I’m in my early 30s, and I have a lot planned for my life: my kids and wife, writing a second book, building new software, flying an airplane, teaching others, and God-willing, making it to Heaven.
Crohn’s can get in the way, but it can’t squash my dreams—I won’t let it. Sometimes it’s hard to see that road back to a time when Crohn’s isn’t pummeling my guts, but it’s there. Soldier on, one day at a time.
Hang in there Jeff. You're absolutely right about needing to look past your present circumstance to give yourself the opportunity to succeed when it is presented. I've been pretty sick for a while and just a had a slight breakthrough -- at least I'm somewhat stable at the moment and can think enough to have thoroughly enjoyed your article on audio over Ethernet. You'll get there as well. Meanwhile, don't hesitate to reach out to others for support. There really are folks out there who know what you're going through. Good luck!
Thank you for sharing your story.
you will be included in my daily prayers Jeff.
live healthy and long.
may Crohn's be squashed and Dreams fulfilled.
Insightful, touching and very well written, Jeff. Thanks for sharing your experiences.
I have a faith too. But with all you have been and are going through, it is great that you maintain yours.
I am just curious how you do it ?
Very best wishes ...
I know this blog post of your is now over a year old and I don't suppose living with Crohn's has gotten any easier for you or your family. But I want you to know that every time I watch one of your You Tube videos or read one of your Blog posts, I think to myself what an amazing person you are and ask God to bless you for all that you given. It would be easy for someone with Crohn's to throw their arms up and simply succumb to the disease or retreat and just interact with family & close friends... but not only do you NOT do that, but you continually give us your valuable time and knowledge. Thank you.
You're quite welcome, and thank you so much for this, it means a lot :)