Moribund Digestive system

[Scottoppy]

Hi All, Hope you had as good a Christmas as was possible. I have a question that relates to the digestive system of PSP sufferers. My dear wife is in late stage and now I find that her once regular habits have become anything but and she now experiences bloating and some pain, we are making increased use of Laxido. Is this a facet of the condition or should we look further? We have had to increase the use of Thicken Up as her swallowing is getting worse, could this contribute to constipation etc.?

[WifeLilyRose]

My husband ( also late stage PSP ) is suffering the same problems. His abdomen has become very bloated and often feels hard. He goes from having very loose stools to not having a bowel movement for several days. Also choking / swallowing issues. A community matron visits our home every 3 / 4 weeks but I’m feeling at a loss as to how to manage these issues, which I’ve been raising for a good few months now. He never complains of pain. Even when he’d fractured a bone in his coccyx after a fall, which was undiagnosed for a long while!

[Atomic55]

Hello Scottoppy, this certainly seems to be a feature in my partners life over the last few months. Inactivity alone would slow down the bowels combined with less eating and certainly less interest in food. Good point about the thickeners but worth checking with GP or speech and language therapist. Problem would like to do is it all or nothing my partner gets constipated and I have a day of two or three like today and then there’s a day off cleaning up repeatedly. The moment I am trying after a set of like today a more gentle and regular evacuation. Problem with increased evacuation is how it impacts on keeping pressure sores clean and sterile. It does seem sometimes that we are faced with endless impossible Actions and from my perspective I think we should have medical mentors.

[Aprilfool20]

I’ve been using this since my diagnosis in 2017. Have now been catheterised but bowel playing up no end. I’m afraid part of the condition. I have now been diagnosed with MSA. Stomach looks as though I’m pregnant and rock hard.jane

[daddyt in reply to Aprilfool20]

xx

[easterncedar in reply to daddyt]

That worries me, Jane. I hope you have sought medical advice about it. Aside from being very uncomfortable chronic constipation can cause real harm. Do take care. Sending best wishes.

[AJK2001]

I'm afraid it's part of the condition, PSP affects all muscles and functions. It's important to take Laxido everyday - even after loose movements, to try and maintain an even level of function. If you stop you go into the "constipated by-pass diarrhoea" circle, which is most unpleasant for all involved! Try taking Laxido twice a day, play around with the dosage levels - we found 3/4 of a sachet am & pm sort of worked. Also felt it helped keeping Mum "active" - this might have been standing up, a short walk up the hall and back, marching in the chair or 2 minutes on exercise pedals. Thicken Up is basically just starch, so shouldn't impact the digestive system. Did find when Mum moved onto dietary drinks only, these had some fibre in, so had to readjust our Laxido dosages. Also found the drinks effected the consistency of loose bowel movements - they seemed to become more sticky, though luckily not smelly. Something the carers commented on as well.

Good luck.

[easterncedar]

It's absolutely a common feature of PSP - as it causes trouble in swallowing, it can result in disruption in the anything that the brain normally directs. Impacted bowels are dangerous. Really dangerous! Please, don't wait until the problem becomes painful and more difficult to set right. Regular use of laxatives can help. Enemas and suppositories may be necessary.