PSP Association
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A difficult question?

As you know dad is doubly incontient but we now face a newish problem.....we have to administer laxatives regularly to keep the bowels working, but lately it seems, dad is unable to actually "push" the pooh out, meaning manual evacuations required (sorry too much information) but I'm trying to explain the problem!

Has anyone else experienced this? I say this is a new problem, first manual evacuation 7 months ago, but 3 in last 3 months! It's an extremely painful process for the patient and I'm wondering if regular suppostries may help one push?

I'm kinda at a loss as to what the answer is, anybody got any ideas? X

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No, I haven't but there was extensive discussion of this not very long ago. Look back. I remember nannaB and some others being very familiar with this .

Jean x

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Ooh really?? Thanks Jean x

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Yes I have had to do this for George quite a few times, not a very pleasant job, but it had to be done, George also had suppositories which work for him, he is constipated most of the time. Yvonne xxxxxx

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So Yvonne do you think suppostries are the answer? Will they help dad get it out? How often do you think suppostries are ok to do?

You are one amazing woman extracting that! X

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Oh Lord, dear Lord, I'm following the thread of this conversation and I KNOW I could not do that performance for certain. I am so weak stomached I gag at normal toilet cleaning up.I shan't sleep tonight for worrying about how I will cope with that !!!!!!!!

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Can't stop laughing gypsywoman!! Funny what things we can and can't bear!! You may well not to cope with this everyone is different. Thank you for making me laugh x

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Hi, S is not incontenant yet. Has been taking laxitives by the bucket full, with on off results. At the insistence of the hospice, I have been fighting for some sort of bowel management for a very long time. Starting tomorrow, the DN's are coming in to start giving him enemas twice a week. Like your Dad, S hasn't a clue how to open his bowels. Spoke to someone from the bowel and bladder clinic this week and apparently, this is perfectly normal, with people with neurological diseases. The DN's did agree to this sometime ago,but gave up after a couple of weeks, so they are kicking and screaming. At least this time it is the bowel team that are going to be fighting them, not me. Perhaps a chat with your b & b team might be helpful. A word of warning, I had to really throw a real wobbly to get them involved, but so worth it. Chatting to this woman, was so enlightening, but soul distroying at the same time. Where have they been all this time????

Hope it's not you having to do the manual evacuation. Done it once, not fun!!!

Lots of love

Heady

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Thanks heady I'll try to get them involved!

It's an ongoing nightmare isn't it? Luckily for me though I have no problem in screeching for help lol

And I did a lil evacuation this morning but I'm not experienced enough (at all) for the real thing!!

And so it goes on......god help us all!! X

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Oh satt2015.....no advise at all....other than to shine your halo & hang in there. Sending hugs X

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Shine my halo, lol, I wish, thanks for the hug suze, appreciated! X

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Sending Hugs & Mr Sheen to polish the halo....ur doing a grand job X

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My husband was on the pot trying to go. I asked if he was constipated, he said that he had forgotten HOW to go.....He is able about 1 or 2x a week...so so far, we have not had to make adjustments.....Good luck and I am so sorry for you both. I would/will hate doing that and or having it done! I wonder if suppositories will work; are the bowels hard or are they loose?

AVB

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Thx AVB to be fair it doesn't really bother me doing it just not sure exactly where I should be heading, if you get my meaning?! Wish I'd trained up properly for this a long time ago! And it's hard, rock hard! Tomorrow no doubt it'll be loose! Oh the conversations we have.......

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I just read Ec's advice or experience with suppositories...so.....this may be the way to go......I'm sorry you and your dad have to go through this...

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When my guy was at respite, they used suppositories every couple of days, said they worked very efficiently and recommended that I do the same. I haven't yet.

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Thx EC I'm thinking that may help move it along....x

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Why don't they offer training days for us ?

They expect us to cope. I took ages working out the convene. Its not as if they want to take over.

xx

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Training Jean lol! I wish!! X

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Yep, Mum was started off on twice weekly enemas a while back, I found it too much and have dropped it to once a week with a sliding scale of movicol depending on what happened the day before. So far so good I find the 'down and up approach' works for her! Better than manual evacuations which can cause damage to the rectum. Get the DN's involved, fight if you have to. Good luck

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Thx you Dizz. Oh god damage to the rectum?!! This just gets worse!! X

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Good job really taking things into your own hands...

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I read that the muscles used to push it out are damaged from psp in the same way it damages (or prevents) other muscles (from working properly). Daddy is fully bed bound, 81 yrs old, started having constipation and actually gets slight dementia when he has any added illness or after a few days of constipation. This dementia (and sometimes even hallucinations) instantly go away once the added issue is corrected. So, what we've done is added Metamucil to his diet, which is a dissolving powder that adds fiber to the diet. We also give him prune juice daily. I try to make sure his daily diet is healthy and contains natural fiber (in fresh vegetables and fruit). Drinking more fluids will help prevent the hard, brick like BM's. We've had great success with this and haven't had to resort to suppositories as of yet. Hope this helps at all.

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Thx you really informative x

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Constipation is a difficult one to deal with. Our Palliative Care specialist told us there are 2 ways meds help. They either stimulate the peristaltic movement (which is what Movicol does), or make the matter soft. She recommended an emphasis on the latter rather than the former, as the artificial stimulation means they become more and more reliant on the meds. We give hubby Lacson syrup twice a day. This draws water into the bowels and has helped a lot to soften things. Previously his stool was very hard and he found it very difficult to get started. In addition we now also give him Evax tablets which helps moves things along. Plus a tummy massage for 5 minutes each night. He now has a bowel movement without suppositories about once a week or so. Good luck!

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Wow thx you x

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Try laxadol sachet one or two every day ,that's for the push ,docusate to keep things soft ,two twice daily and throw in a senakot at night .But our DN's reackon if you manage to go once every 4 days that's ok.After that it is an enemma and thats their job.

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Thx Georgepa it's such a balancing act, we use all of the above but clearly his bowels are very stubborn x

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Hi, I mentioned like your Dad, S doesn't know how to push any more. Also, he gets frightened, the pushing, cramping sensation, you get when you actually open your bowels, scares him, like it's an alien feeling. So naturally, he freezes and clenches his whole body into a ridge lump. Not the ideal position to be, especially when constipated. This, the B &B team understood, but the DN's think I am stupid! They might be right, but not about this, I have spent far too many hours helping him to give birth! If this doesn't work, then they are going to do regular flush outs.Like GMD has said, S is not a happy bunny when full of ####!

I do dispair, in this day and age of advanced medicine, we can cure Cancer to AIDS now, know the full working of our bodies, yet still the bowels are not treated with any seriousness or respect. What's wrong with the scientists? Every single person in the world has them and each and every one of us has had problems of some form, but still we rely on out dated methods.

Come on PSPA, use some of your clout, to get the bowels and bladder problems more recognised by the professionals. It's ruining the last few years of our loved ones lives. We all know there is nothing that can be done for most of the PSP symptoms, but on this front there is and it should be being dealt with as soon as problems start. Not at crisis point, like S and so many others.

Lots of love

Heady

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Wow heady well said!! The whole thing is beyond ridiculous!! X

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Go Heady! X

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Just wanted to say, my husband is double incontinent, but doesn't get impacted, the problem is he doesn't know if he has opened his bowels, or if indeed he is doing one as we are changing him, I find flaxseed very effective, sprinkle a tablespoon on cereal, also someone on this sight mentioned brown sugar as a good mover, I used to give Ian movicol from the GP but find it is not necessary now, natural products have to be better if we can, obviously when it's gone too far he will need help, and I find the DN helpful

Good luck with it, can't say it is something I would relish either, a big hug for support

Janet

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Thx Janet

I find the soft brown sugar very helpful

I need to get flaxseed

X

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Flaxseed is brilliant - you can soak whole seeds overnight then mix them in to breakfast - it will unblock a drain!

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Lol thx you sasmock x

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My wife would sometimes go after 10-15 days. She was on a feeding tube, so the stool was usually pretty soft. And when she's finally go, it could set a world record. We tried various drugs, suppositories, and enemas. The most luck I had was to give her an enema and then put on a glove and add some lubricant to my index finger and gently insert it into the anus. I would then stimulate the bowels by using a vibrating motion. She never complained that it hurt. Worked almost every time. Gross? Absolutely. Worth the grossness? Absolutely. But then, I am the son of a plumber. Just be sure to wash well afterwards. 😊

Ketchupman

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Definitely worth it ketchypman!! X

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My dad has bad problems with constipation. He's getting prune juice once a day and a stool softener twice a day but will still have 7 days without a BM. His care facility doesn't give him a suppository until it becomes very painful for him. I don't know what will help with this problem. It's hard for my mom being there with him all day and he's just grumpy and complaining. I try to tell him this is all caused by a combination of the PSP and the meds. He's hardly eating anything now. He eats a few bites and says he's full. I'm wondering if he thinks he doesn't eat he won't have this problem. He's 6'1" and weighs less than 160. Really starting to worry. Even when we take in some of his favorite food from home or restaurant he won't eat more than a few bites.

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Aww same as dad Lucy! Dad can eat 3 or 4 teaspoons and has had enough! I ask what would you like? Meaning anything at all? Doesn't seem to fancy anything much.....we give him fortisips at least twice a day, they are v v good full of calories and nutrients x

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Yes, My dad required suppostries and fleet enemas on a regular basis and I also had to rectally disimpact bowel, not fun but needed to be done. My father was not able to push bowel out and rectal muscle became to weak at last stages of PSP. Try giving him stool softner on a regular basis.

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Thx you x

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Hi

Somewhat of an expert!!!!the logic is that if the poo is in the rectum and soft enough he will be able to pop it out! So you might need to tweek meds till you find happy medium. After some experimentation we now have lactulose twice daily 15mls if no show after three days two Senna tabs , also he has baked beans every day! Usual crap(!) we all know plenty of fluids etc etc , Rog has a can of lager every night which he sucks up his straw a treat worth trying,

You'll get there I promise

Enjoy your weekend

Juliexx

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Aww thanks Julie, I bet Rog loves that lager, love him! X

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Yes, so very normal. My dad did this for my mom 2x/wk for over a year, except for when I filled in for him. On the night before bath days, he would load her up with laxatives. Sometimes it would come on it's own, but increasingly as she got closer to the end, he had to "stimulate" the results. Suppositories only helped minimally. We did work out enemas with the hospice nurses for the last few weeks. When she was able to be transported to the bathroom, he had a bidet and they would work it out (no pun intended) on the toilet. He was so very committed to her maintaining whatever higher level he could manage that it actually took her falling off of the toilet before he relented and used the diaper and bed pads. I hope this isn't too discouraging, but it is such a very discouraging disease! My mom is gone now, but he had her home until the end (with much help, still often not enough) and she died surrounded by family. Put your heart inside their mind and learn levels of love that so few ever get to experience! Cuss and cry, whatever it takes. You won't regret it!

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Thx you x

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I had to do this regularly earlier on. It was better if C was sitting in the commode with the bowl removed and feet on a stool to raise his knees. I'd then get down to his level and with vinyl gloves on use KY jelly and gentle manoeuvring. Fortunately I could always reach the obstruction. I would exercise him by lifting his legs individually until his knees almost touched his chest whilst he was in bed. This seemed to get things moving once he was on the commode. I never used suppositories so can't comment on that. Sorry.

X

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Aww thx you nannab

How are you doing? ❤️

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OK thanks. Still a few tears every day and the stupidest things trigger them but there are lots of things to laugh about and be grateful for so I'm mostly OK.

XxxX

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Bless your heart nannab you are simply fabulous! And of course you'll have tears, many I would imagine but slowly slowly the brighter days will come! Sending you a big cuddly hug! X

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Yes my husband is having the same issue, what we have been doing is fleet enama. My daughter is a doctor she said to try Magnesium Citric cherry flavor, he drinks half in the morning it helps also milk of magnesia works. Also not to much dry foods try to keep his digestive system sought. I hope this works for your dad. God bless.

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Thx you Marg x

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Hope it helps

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