Ten Things Only Those with IBD Would Understand
For those of us afforded the pleasure of battling inflammatory bowel disease it’s safe to say there are many universal situations and feelings that come with the territory. No matter where we are in our disease journey, there’s a good chance if you can’t relate to this top 10 list now, you will be able to one day.
1. Prednisone—the good, the bad and the ugly
Ah yes, the little white pill that I like to refer to as “the devil drug.” It’s remarkable at controlling inflammation, but it does a number on the rest of our bodies. The pain in your bones that makes you feel about 100 years old, the insomnia, the hideous moon-face that seems to show up about 21 days in, the acne, the shaking of your hands, the irritable moods, the bottomless feeling in your stomach that gives you the ability to eat endlessly and never feel full. We’ve all been there. Counting down the wean down process on our calendars and day planners, anxiously anticipating passing the 10 mg mark and knowing the coast is almost clear for you to stop retaining salt and begin looking and feeling more like yourself.
2. The joys of an empty public bathroom
This brings a smile to my face every. single. time. When you rush in to a public restroom whether you’re at work or out to dinner, stressed about who is in there because you know what’s about to go down…and you walk in…and NO ONE is in there. Added bonus: When there’s loud music playing in the public bathroom. Such a relief.
3. The inner dialogue that is part of every meal and every snack
You know what I’m talking about…those constant voices in your head that ask “Should you eat that? Are you going to feel sick after that? Isn’t that a trigger food?”
4. What it feels like to be sick on the inside, and healthy on the outside
This is a blessing and a curse. Sometimes we can use it to our benefit and internalize our struggles without needing to involve those around us. Other times, when you’re on the brink of needing to go to the ER or just feel the need to leave a social function because you’re in too much pain, and you need to tell a co-worker and family member how sick you are…and you look completely healthy, it can be a tough sell.
5. How the words of pharmaceutical commercials strike a chord
In recent years it seems the drug companies focused on IBD are taking over the airwaves with commercials. No matter how many years you’ve been on a biologic, having to constantly hear the list of side effects never gets easier. It makes you start to worry about your decision and wonder if or when you’ll fall victim to the lymphoma or new and worsening heart failure.
6. The joys of no longer needing to be NPO
If you’ve ever been hospitalized with a Crohn’s or ulcerative colitis flare up one of the first thing to go is the ability to drink water or eat anything, you’ll be NPO (Nil per os, Latin for “nothing by mouth”). In the moment, you probably don’t have much of an appetite, but as hours turn to days and you aren’t even allowed to have ice chips…it gets to be difficult. When the nurses and doctors say the magic words “you are now able to have full liquids”… it’s like you’re hearing you just won the lottery.
7. The anxiety that comes along with long road trips, airplane flights and boat rides
Bathroom accessibility and worrying about going in public is one thing, having to worry about going in a small confined space while airborne or not on land is a whole different level of stress. Whenever I’m on a plane or a boat I just hope for the best.
8. How bloated it’s possible for a stomach to become
As a new mom, it’s amazing how similar a bloated stomach from Crohn’s looks to a second trimester pregnant belly. It’s incredible how different our bodies can look mid-flair vs. a healthy time. It’s like our intestines are trying to come out of our bodies.
9. Feeling on top of the world one hour and in the hospital the next
This is what makes IBD so mysterious and so awful to deal with. Never knowing when it’s going to strike and being completely blindsided by the symptoms. Just when you think you finally have everything “under control,” it seems to recognize your calmness and remind you that it’s not going anywhere anytime soon.
10. The perspective that comes along with living with IBD
Prior to being diagnosed you probably considered yourself to be a strong person, post-diagnosis, years into fighting your disease you will feel empowered by what you’ve overcome and stronger than you ever knew possible. You will have a perspective and an ability to empathize with others that can’t be taught or learned, it has to be experienced. While this disease may feel like an enemy at times, it can also be your greatest ally.
Celebrate the feel good days, pat yourself on the back for your courage and resilience and remind yourself that no matter how painful or difficult a past flare up was, you always found a way to overcome.
What is your comfort level disclosing your IBD to your employer?