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Another damn night ruined by constipation.
I know. Constipation is hardly a subject for polite conversation. My British upbringing taught me that, and my family will probably be mortified that I’m writing about it. Some will not read it, and others may stop following my articles.
But frankly, I don’t care. It’s too important.
According to a 2021 clinical consensus statement from CurePSP specialists, 71–80% of people with Progressive Supranuclear Palsy (PSP) experience constipation. That is an astonishing statistic, and many may be suffering in silence.
Critically, PSP can interfere with the neurological control of the digestive system, slowing the movement of waste through the body. Rigidity, reduced mobility, and impaired coordination make matters worse.
This isn’t simply about eating more fibre or drinking more water. Add swallowing difficulties, restricted diets, and medications that can worsen constipation, particularly opioids, and you have a miserable combination.
Think of all those medication leaflets warning about constipation. Now imagine taking up to 44 tablets or pill pieces a day, as I do.
Over the past week, I endured four days of severe constipation, with bloating, pain, endless unsuccessful visits to the bathroom, and the indignity of an enema. When things finally cleared, I was approximately 3–4 kilograms lighter, although I cannot say how much was due to fluid or other changes.
Two days of relief.
Then it returned.
And last night was another nightmare.
I’ve changed my diet, focused on hydration, exercised as much as possible, used massage, taken laxatives, and worked with my doctors on medication changes. And yes, before the well-meaning advice arrives, I am already leaning forward and using a footstool on the toilet.
Yet here I am again.
My energy is already severely limited, and far too much of it is being consumed by this horrible condition. Because PSP is progressive, I have to face the possibility that constipation will become another chronic problem requiring long-term management.
That scares me.
But something else scares me even more.
If 71–80% of people with PSP experience constipation, think how many may be suffering without being able to explain what is happening to them.
People who cannot describe the pain, ask for help, position themselves properly, or manage their treatment. People who may be unable to obtain relief or make others understand their suffering.
I can still explain what is happening to me, although at times I can scarcely believe it myself. I can research treatments, contact doctors, and ask for help.
What happens when I can’t?
And that is why the taboo matters.
When we are embarrassed to discuss these problems, or dismiss them as trivial, the people least able to speak for themselves may pay the greatest price.
This demands recognition, effective treatment, and particular vigilance from carers, families, and medical professionals.
Chronic constipation is simply not funny and is even less funny when you cannot tell anyone how much it hurts.
