Messed up bowels

[Cinderella80]

Hi friends just wanted to ask if anyone else has experienced this with their loved one who has PSP. My mum doesn't go for a number 2 for a while the district nurse says it's because she doesn't eat much. Then after a period of time of not going she gets the runs. It gets uncontrollable. She will be on the toilet for hours as it does not stop. Like today she didn't sleep all night then around 6 in the morning I took her to the toilet and it is now half 9 she is still there. I attempted to wash and shower her twice but it wouldn't stop she says she has finished but then starts again. I told the district nurse this she says it might of been a bug. I wonder if it's the nutricreme that is prescribed to her that causes this. She is supposed to have it three times a day but i give it to her twice a day. It's high in protein because she has lost alot of weight it is supposed to help her with nutrients. If anyone of you have experienced this please let me know. It's just so hard. And tiring. I would be extremely grateful. Thank you.

[OllieFisher1]

Can you get a second opinion like from a gastro specialist. this sounds miserable and is not conducive to maintaining a quality of life. My father has PSP and is very sensitive to constipation. Its the one issue we always try to help to ensure he is mostly regular because he is just more miserable when his bowels do not move.

[Martina_MP]

Constipation is very common with these diseases. You can put her on a bowel regimen to avoid it and to avoid the day of frequent stools that follows. Contact your local Bowel and Bladder service or bbuk.org.uk/ to discuss your mother’s pattern.

Keeping someone on the toilet for hours is not only uncomfortable, it can actually cause injury. Have her get up regularly to take the pressure off; give her breaks. Ask the Bowel and Bladder folks what you can use on days like this.

[MARKJ9]

I can only tell from my experience of caring for my dad. He never had any bowel movement problems ever in his life. Then, after he was diagnosed with PSP, things changed. It became very erratic and sometime he wouldn't relieve himself for 2-3 days. Then, he had to be given enema. From what I understand, it is due to the brain being unable to control the movement of food through the alimentary canal (peristalsis). We were told that it would get worse as the disease progresses. And, it turned out to be as predicted. Painful to see people dear to us going through this.

[BellaRooney]

We have also found that the nutricreme seemed to cause loose bowels but the Fresubin milkshakes don’t.

I agree with everyone here in that the bowels are definitely effected as the disease progress and it does affect my dads mood and concentration when he is either constipated or experiences a loose bowel movement.

We have stopped the laxatives and opted for a better diet to try and help ensure there’s enough fibre. This involves home made meals which are all soft, l found that the supermarket meals are too salty and seemed to add to the constipation.

This seems to be reducing the number of episodes for now.

[AJK2001]

It sounds like your mum is getting by pass diarrhea because the bowel is full. Mum's bowels were slow and she would take laxatives everyday. If she hadn't gone for 3 -4 days we would up the dose until we got a result. The important thing was to keep on with the laxative all the time, so even after a successful bowel movement she would take them or her bowel would block again.

Has the District nurse felt your mum's tummy to see if the bowel is full or not?

I agree Martina, ask for a referral to the local bowel & bladder service.

[timbowPSP]

Thanks for the info .... looks like a nasty prognosis for me ..... diagnosed PSP 4 yrs ago, male aged now 80. Maintaining healthy diet and lifestyle with appropriate exercise, supplements and therapies. Horrible constipation past few days, but now sorted with a good dose of well soaked linseeds. Maybe in future I'll need to keep a sackful handy? and happy to share a few handfuls. But cheap, easy to use, effective and no chemicals!

On the loo door as a youngster was the ditty 'Sometimes I shits and thinks, and sometimes I just sits'.

So Happy sitting! TimbowPSP

[Indiana-Girl]

Good morning, Cinderella!

What a terrible disease! My hubby has CBD and is now about 6 years into it. For the past few months he, too, has struggled to have a bowel movement. His hospice team had me give him Miralax twice a day and two Senecot pills per day. So far it seems to be helping. He does not have diarrhea but when he has to go it is urgent. He usually sits on the toilet for about 15 minutes and then he is done for the day.He still doesn’t go every day, but we are at least getting him regulated to every other or every third day which the doctors tell us is acceptable. Good luck and may God be with you.

[Poppypolo]

hi like you I am having a constant battle with my husbands diarrhoea, I have tried adding oats and barley and flaxseed to bulk his toilet but with out success it just goes though him and we end up with a flood every day. I am just speaking with the ones who suppose to help as I think the Fresabin energy drinks and nuticream are causing the problem so I have left them off to see if it settles.