Can someone,anyone, please please help me with the vexed question of constipation. I know it goes with the territory of PSP but my husband

[dorothy-thompson]

can go for days without "going" so to speak. I have tried

Prunes and prune juice

He has porridge and fruit every day

He has as much fluids as he will accept

I have tried Ducolease and Ducolax

The GP has prescribed Movicol and Senna

We have had varying success with all of these, some more disastrous than others, I will allow you to use your imagination but nothing seems to be consistent. Our carer and I spend an inordinate amount of our day trundling him backward and forwards to the bathroom, he complains and moans constantly - and who can blame him - until he has relieved himself.

Sorry if all this sounds too basic, but we all know that it is one of the realities when caring for someone who is unable to do much for themselves and I only wished that our "medics" would get a handle on it.

I am sick and tired of hearing some of the comments and platitudes I see and hear in the media, and on occasion on this blog, about the role of the "carer". It is not a noble profession , it is sheer bloody hard work, mainly undervalued, and forget about underpaid!

If the great god in the sky can't cure constipation, what is the point of him or her, take your pick, me, I'm an unbeliever anyway.

Regards

Dorothy T

[SharonAB]

Dear Dorothy,

Sorry can not help - however is there any medication your husband is on that could be making the problem worse?

Also I have a friend that fruit of any description makes it all worse - separate ailment altogether - but it turned out the sugars in fruit were adding to the pain...

And have you tried a contacting a continence nurse linked to another illness for advice - eg Huntingtons or Multiple Scelosis?

Best of luck - you could do with a little...

Regards,

Alana - Western Australia

[Keith246rk5]

Hi Dorothy

i have used Laxido prescribed by GP for my constipation and i ate a lot of fruit grapes melon mostly cost a fortune over the weekly shop but now i suffer with bowel incontinence so off the laxido but it comes and goes between the two the incontinence nurse has helped hugely with dietary requirements for both symptoms

The role of the carer is hugely undervalued

You sound as if your doing a grand job

at times i feel a huge burden to my family especially when accidents happen its embarrassing when your teenage daughters have to help their dad

Stay strong all the best Keith

[JudyJ]

I wish I had practical advice for you but I don't. Most of all, I wish I could take your frustration away. Being a caretakers is worrisome, 24/7, physically, mentally, and emotional exhausting. People can try to dress the term up but most don't live the reality and it's a hard one.

[laroux]

Oh Dorothy,

I read your blogs, comments and questions, and I think, we are in the same boat in so much of this PSP walk. Our husbands seem to be progressing at a very similar rate, going through the same things around the same time. I have tried and tried to relieve the constipation as well. It seems like by the time it gets bad there is a blockage or a partial blockage and nothing short of an enema will help, and usually more than one. Not my favorite thing to do, but you learn to do what you have to do. (you don't even have to pretend to like it) I honestly wish I knew what to do, senna becomes less and less effective and the body becomes more and more dependant on it. I give a laxitive every morning, give stool softeners regularily, add a different laxitive when it gets worse. To no avail. But, get this...my husband in on a tube feed!! takes some things orally, but not much.

I too feel like lots of people don't get it, the stress and strain that I have caring for my husband. There are days I just want to pack my bags and leave because the coping is too much! I work full time and have homecare workers come in for about 1/2 hour in the morning, and an hour in the afternoon. The evening and night is up to me, when I'm at work, I am continuously worrying.

My heart goes out to you,try to take care of yourself.

joan

[carolinesimmons in reply to laroux]

My husband is also on tube feedings. But he usually has a case of constipation weekly that the caregiver treats with stool softeners. After several days that usually works. I don't understand the physiology of getting constipated on liquid feedings. Any help there, Strelley?

[Sharon637]

Hi Dorothy

Might not help but we have the same problem. The neurologist on our last visit advised one week of one laxative and one week of another and so on as if someone is on the same one all the time they become ineffective so always to alternate. We have also had great success with a tip from a GP which was a kiwi fruit every day, the bigger you can find the better. That's the first tip we have had that has worked. The obvious of course, as much fiber and fluid as he possible can every day. Hope you find a solution.

[whisperer]

hi I HAVE THE SAME PROBLEM USE A PRSUCT CALLED SORBITOL glycerine liquid based work well , nothing else works like it. probably get it in uk under same or other name

[carolinesimmons in reply to whisperer]

This makes sense! When I was trying to lose weight, I ate candy sweetened with sorbitol - and it gave me diarrhea!

[Hidden]

My husband had same problem one week constipated, next diarohhea, we use "FODMAP" diet now, a bit complicated but worth it, his progression is fast but this has helped a lot with toileting issues.

[kamair]

I take normolax (have same problem due to PD)

My GD said it is the best for me,doesn't effects my other medicine

Every day 17 mg

Very helpful

I am in Israel - may check how it's called in other contries

[kamair]

igenericdrugs.com/?s=Normolax

[kryste]

I know this is gross and you got to have a lot of love but the only thing that worked and works every time is a sapository the little white waxy ones its the only thing I have found that works good luck hope all is well.

hugs Kryste