Constipation

[LARWLSN]

Hello all. I know there are posts about this... have a slightly unique question at the end of the post. Some background: Mom has been battling constipation for years at this point, we have been throwing so many softeners, laxatives... you name it, we have given it to her regularly and in large doses and even with all of that, her stool is so huge and so hard, you could use it as an American football. Her carers feel like she is not pushing any more, which would explain why it sits in her system longer than it should.

She is on a feeding tube for nearly a year, so this isn't a diet issue. And as she is on a tube because she can no longer swallow and chokes on her reflux, we are limited as to how much liquid we can give her, so i know that doesn't help her either.

-- what I am specifically asking about is whether anybody has encountered constipation due to the patient no longer able to push at all? Is that particular connection from the brain something PSP patients can expect to have break down?

Thank you,

Lara

[Zerachiel]

Hi, yes, my wife has constipation due to drugs and needs laxative to help soften the stools but also has difficulty pushing when required too. It is another PSP issue with muscle control.

This also applies to urine, she retains and cannot make herself go, luckily once asleep the bladder empties.

[LARWLSN in reply to Zerachiel]

Hi, thanks for your reply... Mom also has trouble emptying her bladder - it would make sense the same would apply to her bowel. What laxative do you use? And is your wife using a feeding tube?

[Zerachiel in reply to LARWLSN]

Yes she is using a feeding tube, lactulose 20ml maintenance dose, second dose if she hasn't been for a couple of days. We use fortisip food, she has one bottle of fibre fortisip daily or two if required.We also have sachets of Transisoft if we need to.

Total fluid intake is 2 litres.

[easterncedar]

we used suppositories. It got pretty awful.

[Sawa]

Hubby was never on a feeding tube, but yes, things got very blocked up when he just wasn't able to push anymore. We tried adjusting his diet, used suppositories etc. They all helped a bit, but nothing really fixed it. Got to the point where I would need to help manually to 'encourage' the poop out - the things we do for our loved ones, thank goodness for rubber gloves! Another thing you can try is daily stomach massages. There are certain gentle massage techniques that can be used to stimulate movement; not sure how effective it is with more advanced PSP, but hubby always seemed to find them enjoyable and relaxing.

[LARWLSN in reply to Sawa]

our carers are doing massages a bit. i am not sure how much mom enjoys it, but they do give it a go.

[David750]

My wife (PSP) took Laxido twice a day to soften stools for easier passing. Towards the latter stages she refused to take it (as a nurse and having read up all there was to read about PSP when diagnosed, I think she was telling us she had had enough). She ended up in hospital with severe constipation. When she refused the Laxido I consulted the GP who prescribed Sena. All this did was push food from the upper bowel to the lower, exacerbating the situation. In hospital she was put on a drip and constipation removed by the surgeon. She came home fully hydrated but could no longer swallow so put into palliative care at home.

[LFG3]

Constipation and bladder issues are VERY common with PSP as those functions are controlled by signals from the brain. I used Docusate sodium 250 mgs twice a day to keep stool soft. Bought on Amazon. And an enema EVERY day to pass the stool, recommended by his Dr. Seemed the best solution for us, as we had tried everything else previously. Hope this helps. Such a difficult journey this awful disease causes. ❤️

[LARWLSN in reply to LFG3]

Oh my.. an enema EVERY day.... was your loved one on a feeding tube?

[LFG3 in reply to LARWLSN]

Hello,

My husband chose not to have a feeding tube. He passed away this past August after 5 yrs, 8 months of Richardson's type of PSP.

His Dr recommended suppositories OR an enema daily. Jim preferred the enema because they work much faster. Basically put it in and take him directly to the potty. The suppositories you put them in and wait 30-45 min before going to the potty.

The Docusate sodium 250 mgs twice a day will keep the stool soft. It is just a stool softener, not a laxative. OTC Docusate sodium is 100mgs, much weaker. Get the stronger ones from Amazon.

[LARWLSN in reply to LFG3]

So sorry for your loss. Mom is no longer able to move herself in anyway, so putting her on the potty is ... tricky. Even with commodes and lifts. We used to be able to rely on commodes but no longer, unfortunately.

[Sun-flowerwearer]

Hi

Yes it absolutely is due to her nervous systems control over smooth muscle movements in the digestive tract .. a condition known as dysautonomia. Reduced mobility and side effects of medicine as well as the brain disease effecting communicating with these muscle groups.

My husband isn’t in a feeding tube but takes multiple laxatives daily under medical advice and still only passes a bowel movement on average every 5 to 7 days! This has worsened with the PSP progression but constipation has been a constant symptom for the last 3 years.

[Northstar1]

Hello I give my husband an Micralax enema one day and alternate it with two suppositories. He has two laxido daily, we managed to get fluids down him. Hope this helps x

[timbowPSP]

Hi Lara,

Go natural, not chemical! I am Male 82, with PSP past 5 yrs. Constipation came along too, and I can still 'push' - but straining can be dangerous to the bowel (PSP link?).

So I buy raw (organic) linseeds, tip half inch deep or greater into a glass, add very hot water to half full or so, allow to soak up a few hours. When gelatinous drink down or spoon in. You may need to do this twice a day. Try it out, and lets hope within a few days ur system will be running free, like mine is! Keep me posted (in UK). Best wishes. TimbowPSP

[LARWLSN in reply to timbowPSP]

You are right, straining can be dangerous, which is why we are worried. Honestly, we have no idea how mom has been pooping what she has been. For years. I know i couldn't manage it. She brought hospital staff to a standstill with what came out of her. It was her version of a "mic drop."

Unfortunately, as mom is only getting her nutrition and liquids via feeding tube, your suggestion isn't possible for us, but thanks for replying!

[bullet65]

My doctor has recommended restoralax, works good for me.

[Zerachiel]

Hi again, below is a link describing the different laxatives and how they work

mayoclinic.org/diseases-con...

[Junky60]

yes, my husband reached this point when the muscles just couldn’t work anymore, we did all the things you have mentioned but nothing really helped. This disease is so wretched and always being new challenges until it ravages the patient completely

[LARWLSN in reply to Junky60]

your reply is so true - and my heart lurched as i read it. The other cruel part is... sometimes solutions seem to work. And you get hopeful that things can be managed well enough. And you forget that is impossible, ultimately.