Manage constipation like a boss

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This is a photo of me backstage before the Fashion & Compassion show yesterday. I had four days of temozolomide (Temodar) in me and was feeling pretty decent.

Constipation is the most difficult side effect I’ve had to deal with while taking temozolomide. In the past it has gotten to the point where I wouldn't want to bend over, sit up, breathe, or hug anyone. Even though I have tried to remain active and focused on nutrition, I figured constipation was just something I had to deal with while on chemo.

Last month I mentioned all of this to my palliative care nurse practitioner and she passed along some valuable tips to help me attack constipation before it strikes. I wish it hadn’t taken seven months for me to learn this.

Here's the plan I was given to ward off constipation while on temozolomide (Temodar)

  • Day 1: Take a stool softener along with anti-nausea meds 1 hour before night time temozolomide.

  • Day 2: Repeat Day 1.

  • Day 3: Take one stool softener in the morning and two at night along with a laxative before night time temozolomide.

  • Day 4: Repeat Day 3 and add an extra laxative at night.

  • Day 5: Repeat Day 4.

  • Day 6 & 7: Slowly wean yourself off of the laxatives and stool softeners until your poop becomes normal.

It took seven months of suffering to figure out this plan. Let’s hope it does not take as long for you! Ask for a palliative care consult to help you feel better from the side effects of chemotherapy.

Even though I don't feel amazing today (Day 6) I certainly feel better than last month. I am happy to have averaged one bowel movement a day during this round of temozolomide (versus 3-4 over a 7 day period).

Yay for me. Yay for you. Yay for pooping.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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