I’m at my wits end with this problem. It was my first symptom occurring a decade before diagnosis and it is my worst problem 15 years after dx. I have tried every diet, laxative, suppositories, enemas, and it is relentless. Every doctor I consult has a different opinion on how to manage this. My most recent doctor suggested that I try the prescription drug Linzess. It is $300/mt but I can’t afford it and I don’t qualify for discounts.
I can’t eat much as I get full fast, I’m often bloated and gassy but I just don’t get the bowel contractions. I exercise every day, eat lots of fiber, have cut out most bread and flour products like cookies, cake, etc. I drink water all day.
I’m sorry you have to go through this it’s such a hard thing to deal with. My one suggestion is to have your microbiome checked for good and bad bacteria. Gas is often a symptom of an inefficient system which can have different consequences. The analysis of the gut bacteria will require a stool sample and is not cheap but it’s a one off. You should not need another. Once the specialist knows what the score is they can prescribe the treatment, usually antibiotics and antiparasite therapy. After which they usually prescribe probiotics for a while. If you have tried this and it has not worked I am sorry this is all I have.
Sounds like me. I’ve come to realise that the problem is individual based. I went for a consult with the Colorectal department at my local hospital. They ran several tests, probes, looked inside etc etc. The conclusion was that I have a super sensitive rectum, and the muscles of my anal sphincter have degraded to the point of being visible but functionally of little use. We don’t know how PD related this is, as my spine is, to quote the doctor, “a fused mess” due to spinal stenosis and surgical scarring from historic surgeries.
For management of this I find a daily dose of laxative, not too much, and care over diet the best/only solution. Plus, I make sure that I am always near a toilet. No control over when things happen.
One of the worst things about it is the 24/7 “Tenesmus”, which can be rather uncomfortable. Some days it feels like there are bricks in my gut, painful. At night, I might be woken by acutely painful cramp of the abdomen, again - unpleasant. As is the sweaty nausea that precedes each and every bowel movement. And when you think you’re done … how to maintain hygiene when you have mad tremor, or Rigidity in your arm and wrist.
I try not to but I do worry about this and where it’s heading. It’s been a long eleven years so far. I noticed recently that I am being referred to as “Advanced stage Parkinson’s” by the various neurologists and doctors I’ve been sent to! Can I have a star?!
Be careful about assuming lots of fibre is the answer. Wheat bran is obviously fibre, but can also bulk out the stool, making it difficult to move. I used to eat for breakfast two wheat breakfast biscuits (Weetabix) plus two tablespoonfuls of wheat bran, plus two tablespoonfuls of milled golden flaxseed. I would consistently drink three litres of water each day due to only having a single kidney. I was still constipated! My wife (PD sufferer) and I have both found one or two glasses of prune juice daily to be very effective. It also has the advantage of being natural.
Can I have a star?! 