TL;DR I went to the hospital, I’m okay, do not worry. I want to share my story about some sub-par patient care.

As a doctor, when talking to patients, talk to them like human beings. Imagine you’re the one in the bed feeling sick and scared. Think about how you would like to be spoken to and treated.

Do not say this:

• “You must have body issues.”
• “We know – we are the doctors.”

Do not do this:

• Barge into the patient’s small bit of space, wake up the patient by speaking loudly, and demand instant attention.
• Immediately tell the patient what you are going to do without asking the patient how they are feeling.
• Assume you know more than the patient about their health situation and life with their health condition.
• Ignore the fear your patient is clearly communicating.
• Dismiss the patient’s concerns.

If you’re caring for a patient who has a permanent ileostomy do not do this:

• Start your conversation by telling the patient that “they must have body issues because of that thing,” and then point to the patient’s abdomen.
• Tell the patient that you have to remove their pouch – and not have any adhesive remover spray or wipes.
• Ignore the patient’s concerns about tearing her skin when you pull her pouch off.
• Assume you know more about living with an ileostomy than the patient and then tell the patient she is wrong when it comes to cleaning her skin and applying a new pouch.
• When the patient suggests you bring people like her in to have a conversation about what it’s like to live with an ileostomy and permanent disability, tell the patient “I know what it’s like.”
• When you tell the patient with zero warning that you’re going to insert your finger into her stoma and she tells you no – you need to slow down, stop, and talk to the patient like a real human being. Do not insist on a procedure with zero explanation. Do not tell the patient it won’t hurt – when you do not have a stoma and do not know what it actually feels like.
• When the patient asks you why you didn’t bring a stoma nurse down or get the appropriate supplies from a stoma nurse, do not respond with “well, that team is on the second floor.”
• Apply a new pouch without cleaning the patient’s skin and then walk away without any actual medical advice, compassion, or information about what will happen next.

This is what happened to me this past week when I ended up in the Civic Hospital in Ottawa for a severe intestinal blockage.

Up until this experience on Wednesday morning, I was very pleased with my care at the Civic Hospital.

I did not have to wait for a bed when I arrived on Tuesday evening. I had a nurse with me instantly and a doctor very quickly. Everyone was very compassionate and concerned about the tremendous pain I was in.

And then three doctors walked into my little space on Wednesday and made me feel invisible. These doctors minimized my concerns. They made me feel embarrassed about my body and my disability.

It’s taken me a few days to write about this because I still can’t believe it even happened. My fear is that these kind of interactions are common for people living with ileostomies, colostomies, urostomies, and other disabilities.

Since I’ve been home and chatting with friends about being in the hospital and why, I realized there was another massive gap in my care…

If you’re a doctor treating a patient with a severe intestinal blockage:

• Remember, while you need to relieve the blockage, the care does not end there.
• You need to ask the patient questions about their diet, hydration, and their stoma output for the last week or so.
• You need to ask the patient general questions about pain, cramping, fatigue, distention around their stoma, and how their body reacts to food.
• Your need to determine what caused the blockage.
• You need to provide the patient with answers.
• You need to tell the patient more than “follow a low residue diet”. Especially when you learn that the patient struggles with pain, digesting food, and frequent small blockages.

The crazy thing about this hospital experience is I’m left with minimal information about what to do next.

Should I change my diet? Do I need to pay more attention to electrolytes and hydration? Are there warning signs so I can prevent this from happening? Should I worry when I get pain after eating? Will this happen again?

If you’re a doctor, remember the patient is relying on you – they need you to help them. And if you don’t know or are unsure, ask someone – believe me, the patient wants you to. Patient care should not end with ticking a box on a form and discharging someone.

P.S. please do not worry. I am okay.

P.P.S. if you’re a doctor, nurse, or other healthcare practitioner who has questions about ileostomies, stomas, and disability – you can contact me, I’m more than happy to talk and answer your questions.