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Constipation and the role of stool softeners

I have a friend with Parkinson's who suffers from constipation and has told me for months how he is working to rid stool softeners from his system. I cannot find any info on the topic and don't know enough about Parkinson's to offer any advice. I did get him to describe his situation on November 4, 2023 and will include what he wrote below. He is still suffering the same symptoms now. I told him that I would post his summary so it contains no personal information. The remainder of this message contains exactly what he wrote. Any advice or comments are welcome.

> I was diagnosed with Parkinson's 6 years ago. My doctor prescribed sinemet, but did not give me any paperwork about the med. Nearly a year later, I was struggling with constipation. It was over a year after starting sinemet that I finally learned that sinemet causes constipation. Over the course of a few years, numerous visits to urgent care and around a dozen medications, I went through considerable hardship in my effort to clear out my constipation. I've had to increase my sinemet intake from 3 to 4 and then 5 tablets a day.

> Two years ago, I tried Metamucil fiber, which proved to be quite effective on the sinemet. At that point, I had narrowed down my meds to suppositories for my daily food poop and stool softener. I took the CVS stool softener until a year ago when I realized that, after a reduction of my constipation from the fiber, it was getting worse again. It was then that it became clear that my constipation was due to the stool softener.

> Since then and after having taken over 1,000 stool softener capsules which had stored up in my body, I've nearly cleared it all out. I used various exercises, 3 suppositories daily and a healthy diet in the process. The stool softener is heavy and sticky, making it hard to poop out. Today I have a relatively small amount in my body, but find it very hard to clear out. It gets into my sinus cavities, causing dehydration. I can poop out small quantities of the stool softener. One serious side effect is my weight loss from keeping my digestive tract clear to allow the stool softener to ooze down. The best food for digesting food is kale, especially the stalk.

> I'm close to getting the last of the stool softener out, but am more debilitated than ever in doing so. Is there anything that will help me to clear out the last of the stool softener?

  1. Hi , thanks for taking the time to share this experience. Many people with PD struggle with digestion issues, and it's not always easy for people to talk openly about sensitive topics. We appreciate you feeling comfortable bringing up this important topic. It's really frustrating that your friend's doctor didn't provide information about the side effects of the medication. I hope others may chime in if they have experience with stool softeners. While we can't provide medical advice, we encourage your friend to check in with a doctor or dietician who may be able to provide more guidance on digestion issues. Keep us posted on how your friend is feeling! - Lauren (Team Member)

    1. Hi , I hear how much this has been weighing on your friend. I wish they did not have to go through that. Doctor's offices may have social workers or others on staff who can help identify social services. I'm not sure what type of support your friend may be looking for, but I wanted to share some information below in case any of this is helpful. - Lauren (Team Member)

      https://parkinsonsdisease.net/coping-long-term-care
      https://parkinsonsdisease.net/answers/finding-a-caregiver
      https://parkinsonsdisease.net/resources-health
      https://www.parkinson.org/resources-support/helpline

    2. Thanks very much for the links! I'll pass them on.

  2. Hi,

    I'd recommend more soups. Make sure you are drinking 2 l of water a day. Eat more fiber (e.g. the shredded wheat from Post)

    Also, I found the advice at
    https://jodiknapp.com/the-parkinsons-protocol/?gad_source=1
    quite good for nutrition, and the one at
    https://www.youtube.com/@HowardShifke/videos

    helpful in terms of using exercises that target the effects of PD. The Chinese exercises there (QiGongs) are good in terms of keeping me in good shape wrt PD effects..

    Cheers.

    1. Thanks! I'll check the links out and pass them on.

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