The Most Dehumanizing Moments I've Experienced with IBD

Having Crohn’s disease comes with several less than desirable moments. For example, having diarrhea frequently and urgently, with occasional loss of control of bowels, and sometimes even not making it to the bathroom in time. Or constant nausea, coupled with unpredictable vomiting - in the car, in a meeting, while walking my dog. The list could go on and on. Each of these things have impacted me at one point or another during my patient journey. Some moments are far less pleasant than others, but each has contributed to my growing thicker skin, more grace and patience with myself, and appreciation for the good days.

The anxiety around a stool sample

Unfortunately, if you live with Crohn’s disease or ulcerative colitis, you know that the progress of our disease, diagnosis of additional bacteria or infections, and inflammation levels often must be measured not through blood samples or imaging procedures, but rather, through the dreaded stool sample method. This causes me more anxiety than I can express. Although I poop several times a day every day, I am usually not able to “poop on command” or go to pick up the collection kit and provide a stool sample right at that time while I’m in the doctor's office.

Trust me, I try. I try every single time. And then I feel defeated that I can’t just swab my behind and get what they need. That my body does all sorts of things I don’t appreciate, but when I need something from it, it’s unable to deliver.

Then, with my cheeks burning, I have to tell the nurse I can’t provide a sample. I have to walk through the office, out of the building and to my car carrying the collection kit, including the unmistakable plastic toilet seat hat and put it in my car. This alone makes me feel shameful. I have no idea why. I’m almost embarrassed or disappointed that I have feelings about this process, but I do, and I’m sharing them so you know you’re not alone if you relate.

Completing a stool sample at home

When I get home, I put the plastic hat and collection kit in my bathroom, and usually let it stare at me for several hours/days even or trips to the bathroom before I work up the energy/strength/courage/patience to do the dang thing. This is the point at which IBD feels dehumanizing to me. The point where I have to not only poop in a container, but then scoop up pieces of that fecal matter and deposit it into several test tubes, seal their tops, label them, and place them back in their ziplock bag. And, if you’ve had stool samples ordered regularly like me, you’ve likely either been in a flare or experiencing symptoms like those from the c-diff infection - meaning, your sample is far more soft or liquid than anything you care to investigate, let alone interact with. It also probably doesn’t smell the best.

And then, then, after it’s collected, if you can’t head right back to your lab to drop it off, it has to be stored in your fridge. WITH YOUR FOOD. Where your partner or spouse or child or roommate will see. And ask questions. And make comments that are meant to make the situation more lighthearted but instead make you want to bury your head in the sand.

This whole process makes me feel mortified and gross

This combination of actions and events, every time, makes me feel mortified and upset, and yucky. I know there’s not yet a better method to do this, which is why we are still fighting through this terrible process, but I also wanted to share the way it makes me feel.

If you’ve collected stool samples at home and have found ways to process your feelings on it, or feel less frustrated by it, I’d love to hear!