The Other Side of the Bedrail
By Mary Pugh Alligood, PT
Why listen to me? I have unique insight as I have practiced for 18 years as a physical therapist (PT) before being diagnosed with inoperable brain cancer. My surgical history reads like the kind you had in PT school; that seemed impossible and was obviously made up by a professor with intentions to construct a really difficult exam.
age 16: Vastus Medialis Obliquus advance lateral release
age 36: C-section
age 37: hysterectomy
age 43: craniotomy to confirm cancer
age 49: sepsis before colostomy
So begins my trip to a new body part. June 16th, I could not get out of bed even with “maximum assist” and all my therapy tricks from log rolling to breathing with movement. Emergency medical service was dispatched. With 6 people I was moved to a back board and carried down 16 stairs to waiting ambulance. I do not remember much after arriving at the emergency room. I am told that my amazing 19-year-old son had conversations with the surgeon – discussions where my youth was a determining factor and surgery chosen to be temporary solution.
The next independent memory was being in acute care after 5 days in ICU – where I am told I did not sleep. I looked down and there was the first of many appliances I would see on my left lower quadrant. I remember thinking I was hallucinating. All the powers of denial went to work: This can’t be me! I don’t have a colostomy.
Next memory: a PT and her student coming in all smiles proclaiming “We have to get you out of bed.” Really, I thought, have you seen me, do you realize I have a new body part? I wear poop on my abdomen?
Suggestion #1: Please validate feelings of a patient with a new colostomy bag by saying something like “I know this must be frightening, but if you say stop, we stop.” Taking the time and giving a little control, a little empathy makes a huge difference. The therapist said: “There are 3 of us [PTs] – we can do this.” Somehow it was reassuring and validating knowing the third PT was me. Another simple but powerful example, one fantastic nurse just said: “If you have questions please ask. If I don’t know the answer I will get it.”
Eventually I progressed to inpatient rehabilitation – a whole new world even though, ironically, I had previously been supervisor on that unit. The required 3 hours sure seemed like a lot! I had speech therapy due to lack of executive skills noted while in the ICU and occupational therapy (OT) due to functional loss. The first OT session, a shower – are you kidding?? I am just learning how to take off pouch, clean, and replace. I don’t care how my hair looks! Finally though, good hygiene mattered again and I starting with brushing my teeth. Since both PT and OT helped with this task I decided my breath must really be horrid!
Suggestion #2: Starting with small tasks can actually translate into big goals for your patient. For me, just brushing my own hair was empowering and made a shower actually seem possible.
Suggestion #3: Colostomy is a rough surgery. With so many changes, the other side of the bedrail is terrifying, so be a pillar of strength as well as compassionate caregiver. Please do not discount how scary this tiny opening on the belly can be. Rehabilitation is so vital to seeing the bright side of remaining abilities of your patients – us “colostomites” need you.
We are sad to share that our kind friend and colleague passed away on November 26, 2017. The editorial staff of JHR are deeply grateful to Mary for sharing her perspective as a patient and physical therapist through her challenging years struggling with brain cancer. She is remembered for her enduring optimism, loving spirit and fierce desire to improve the lives of others through her journey. Her life enriched us all.