Making plans. It’s almost an oxymoron when you battle Crohn’s disease or ulcerative colitis. For the past month or so, I’ve been corresponding with a girl named Amanda. We were brought together through a patient advocacy group known as “The Breakthrough Crew.” One of the organizers told us we should connect. I’m so glad we have.
You know that feeling when you talk to a complete stranger and feel like they’ve been a part of your life and your patient journey since the start? That’s how it is with Amanda. We went from emailing, to texting, to talking on the phone. Our phone conversation felt so comfortable and effortless. She lives in Chicago, I’m from there. We grew up 20 minutes from one another, little did we know our paths would cross in our 30s. This past week, my virtual IBD bestie and I made plans to meet up for lunch halfway in the suburbs.
Unfortunately, days before our lunch plans, Amanda was hospitalized with a flare up. We texted and decided it would be best to change our plans and for me to take a train into the city so she wouldn’t need to drive. We were both so excited. Three days later, at 10 pm the night before we were going to hang out, Amanda was admitted back into the hospital.
This is life with IBD. Making plans and then your disease intervening and saying “not so fast.” This is life when you don’t know what the next hour or day will bring. IBD can rob us of so much of what so many people take for granted. In these moments, this is when friendships within the IBD community mean so much.
While Amanda sits in her hospital bed, we’re able to correspond and be there for one another. I don’t think twice about having my plans change in a matter of moments, it’s almost an expectation. When I heard she was hospitalized, we shifted our plans and rather than lunch and girl talk, I was going to take the train and an Uber to the hospital to meet this girl who I’ve never met, but feel so close to. Unfortunately, her and I both knew rest was what she needed more than anything. And hospital visits, while uplifting, can be exhausting.
When she voices frustrations I too can feel her pain and offer meaningful words of encouragement.
When she talks about her incredible husband Rick and how the poor guy wasn’t even given a chair to sit in as she struggled in pain for hours in the ER, it immediately brings me back to moments where my husband had to lay in my hospital bed with me because he too wasn’t given a place to rest.
Since I started sharing my story in 2014…nearly a decade after my diagnosis, I’ve realized how empowering it is to be open, to find comfort in friends—both virtually and in real life—and to know there are so many people out there who can be your lifeline in health and in flare ups. Find your Amanda. Find your friend who gets it. Even if you have yet to meet in person, they can bring you comfort you never realized you needed until it was available.
Amanda and I made plans. They didn’t happen. But, hey…that’s the nature of the beast we call IBD. If it weren’t for IBD, our paths never would have crossed. We’ll try again next month, and the month after, and one of these times the stars and our health journeys will align.
3 thoughts on “Canceled Plans: Dealing with the unexpected with IBD”
It’s so true! I had plans to go with 4 of my very closest friends on a trip to celebrate one of our friends 40th birthdays. I had put weeks into planning this surprise for my friend and the day we were suppose to leave I ended up in the hospital in a flare and with kidney stones, related to my Crohn’s. It was absolutely heartbreaking and such a disappoint. But you are right, if there is one thing this disease has taught me it’s that nothing is certain and everything can change in an instant. I can’t even count how many times this year I have made plans with friends, my husband, but mostly my children and had to end up canceling or staying home due to not feeling well. It’s hard and having friends who understand is so important. My friends are great and are very understanding but they truly don’t know what it’s like. I’ve been blessed to have my mom, who has UC, to be able to talk to, she really gets it!! I’d love to be part of a support group or something because it does feel lonely quite often! It’s hard disappointing people all the time!! Thanks for sharing this!
Thanks for reading, Jennifer and for sharing your personal journey. Sounds like you have a wonderful support system, that is half the battle!
Hi! I enjoyed reading your blog entry. My name is Rachel and I have ulcerative colitis and after having 2 surgeries, my disease is definitely more manageable. But it still needs to be managed.
Thanks so much for sharing your story.
Please check out mine at ibd-mama. I am publishing my second entry today and am so comforted to read other sites on ibd that aren’t just depressing but uplifting. I am going to follow you now I hope you will follow my blog as well!