Wearing Colorectal Cancer on Your Sleeve – Sort of

We recently collaborated with the online patient community Smart Patients on an empathy-building program called #ColorectalCancer1day. Together we matched patients and caregivers affected by colorectal cancer (“teachers”) with researchers and clinicians from Kaiser Permanente who wanted to learn more about what one day with colorectal cancer feels like (“learners”). We’re now sharing the highlights from this learning experience with a broader audience.

Besides our teachers, learners, and an eager pursuit of empathy, perhaps the most important component of each of our #1day empathy exercises is the kit that is sent to the learners. For our #ColorectalCancer1day participants, we developed a way to simulate using an ostomy bag. (An ostomy bag collects waste from the intestine after a surgery which removes part of the intestine and connects the remaining part to an opening in the skin.) We worked with our teachers like Deb, a colorectal cancer survivor and an ostomy advocate through her work as Director of Ostomy 2-1-1, to create a low-cost kit of supplies to simulate an ostomy bag using a Ziploc bag filled with water and some surgical tape, and other symptoms and side effects associated with colorectal cancer treatment.

Based on the feedback we received from our learners, our empathy kit did an excellent job replicating aspects of the experience of wearing an ostomy bag, and forcing our learners to confront some uncomfortable and seldom discussed truths about colorectal cancer treatment.

For Andrea, a Kaiser Permanente researcher, the physical representation of colorectal cancer treatment made a significant impact on how she viewed living with colorectal cancer. “Despite having thought a lot about the chemotherapy side effects of CRC treatment, I had not truly considered the surgical side-effects, outside of fecal incontinence. I understood that many patients get ostomy procedures and need ostomy bags/supplies. However, I never really stopped to consider what that truly meant. I also did not consider the life-long financial burden associated with getting the supplies you need for your ostomy. I taped the water-filled “ostomy bag” to my abdomen and felt the tug of the tape on my skin when I moved. I also went to work out that day and decided not to keep the bag on while I was working out. I realized that had this been a true ostomy bag, I wouldn’t have had the option to opt out.”

Katie, a Kaiser radiation oncologist, shared some of her thoughts about wearing the ostomy bag on Instagram during her #ColorectalCancer1day experience. “I was so self-conscious! I also heard the bag slosh while talking to a patient this morning. I was instantly worried that she heard it too. Couldn’t imagine if I was also worried about the possible smell. BTW – wearing a plastic bag against your skin when it is hot and sweaty sucks. And…my husband who is a total gem doesn’t even want to talk about the bag, let alone see it. I was shocked by that. Imagine how a colostomy affects your love life. I think every doctor should do this. It’s been eye-opening.”

These types of emotions and thoughts are crucial. Feeling the ostomy bag is one thing, but wearing over the course of your day taps into a deeper understanding of what it means to live with colorectal cancer. During the #1day experience, unexpected events – like what Ginger experienced below – often lead to a better understanding among our teachers and interested onlookers. “Wearing the ostomy bag was also quite informative. I wore it all day, even while bike commuting and playing with my children after work. At work, I did have a couple of leaks, one while I was talking to my director. It immediately got my director’s attention, and she inquired about it. Her father was a CRC survivor, so we got to talking about that, and we talked about how embarrassed I might have been if that was bodily excretions rather than just water… It reminded me a lot of how I feel about my mastectomy, more frequently self-monitoring to assure that I’m passing as normal and don’t upset anyone who doesn’t know what I’ve been through.”

Beyond the ostomy bag, Katie also wore cotton gloves to simulate neuropathy and follow along with her teacher, Val. “Wearing gloves to do some of my daily tasks is humbling. And, I don’t even have the pain that comes with the numbness! I’ve been communicating with my teacher, Valerie all morning and learning so much. She reminded me that I also can’t drink anything cold bc it would be excruciating due to Oxaliplatin chemo. This is no joke, and I thought I knew about cancer…..I have a lot to learn!”

The goal with empathy kits like this ostomy bag is to put a sense of perspective in the minds of our learners. While they may have already had a comprehensive understanding of what colorectal cancer treatment entails for patients, this can be an opportunity to more deeply understand what how it feels. And that understanding signals an empathy that we hope to share on a grander scale as we continue to foster these types of conversations between patients and those working to serve them better.

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