“We all need to poo!”
We’re funding a research project to find ways to support people with MS to self-manage bowel symptoms. Research Network member Pat Poole found out more from nurse and PhD student Jessica Parkhouse.
I’m Pat, and I’ve had primary progressive MS officially for about 10 years, unofficially much longer than that. I’m part of the MS Society’s Research Network, which helps researchers consider the real-life needs of people with MS when designing their projects.
I live in a small Yorkshire village, with my two cats and my husband. I have children and grandchildren I like to spend time with, and I enjoy crochet, knitting, and working in my garden.
Jess’s story
I recently met PhD researcher Jessica Parkhouse. She told me about her new study which aims to develop a programme to help people with MS discuss their bowel symptoms with their clinicians, and self-manage their bowel problems.
Jessica is a nurse by background. She became interested in MS because her auntie has MS. When she lived in Australia she did a stint on a specialist ward, where she made the connection between neurological conditions and digestive issues. Jess told me: “It’s everything I’m interested in, medicine, neurology, therapeutic treatments and self-managing chronic illnesses.”
A difficult subject
When I was talking with Jessica, the comical phrase “we all need to poo” came up quite often. And it’s true, everyone from the King downwards has this amazingly efficient waste management system within our bodies.
Jess told me that most people with MS will experience constipation and incontinence (loss of control of your bowels or bladder). It’s the third most difficult to manage symptom, after fatigue and pain. But we don’t talk about it. We might chat briefly to our friends, but we find it difficult raising the subject with our medical professionals.
Jess wants her programme to raise awareness among medical staff that they should initiate conversations about bowel management. If clinic time is short, doctors should have the knowledge to be able to signpost patients to the proper support.
She’s passionate about giving people with MS the tools to raise the subject themselves. And play a significant part in these discussions. She also wants to remove the stigma that can be associated with talking about our poo.
Taking back control
We talked about the problem that many people still live with MS symptoms silently. Lots of us are thus treating our symptoms with a mix of trial and error.
Taking control and managing chronic symptoms ourselves works well and it’s what Jess is aiming for. But we need setting off along the right road. We need the knowledge and strategies to be able to discuss our bowel problems with our clinical team and pursue treatment.
Empowering us to feel in command of our condition can have a beneficial effect on our quality of life. This is why Jess is so passionate about the project.MS care varies countrywide so much that it can amount to as little as half an hour with an MS nurse twice a year. Self-management can help address that gap in provision.
Jess’ programme will give people with MS the language to use, know who to go to, and quantify issues for health professionals. Opening dialogues and raising awareness with clinicians can only lead to better outcomes for people’s quality of life.
Watch this space
Jess’s project is in its infancy now. She’s developing it with the help of people who live with MS, and she needs to decide what form the programme will take.
She said she hopes she can do a good job and do the project justice. I cannot wait to see the finished product.
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