PSP Association
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Ongoing painful constipation with diarrhoea -what can we do? Has anyone else suffered from this?

My dad is in the late stage of psp - he is fed by a tube through his nose and cannot move. Since August he has spent time in n out of hospital due to painful constipation- leaving him moaning most of the time. Doctors say a scan show his gut to be highly constipated - despite him passing diarrhoea. What can we do? It is awful seeing the amount of pain he is in.

13 Replies

The diarrhoea is caused by the fluids leaking around the blockage. Is he able to have a warm bath - if nothing else it may ease the pain. Unfortunately our bowel movements are helped by us moving about and the pw PSP is likely to be immobile. PSP advisors should be able to suggest medication and food additives, have you spoken to any?They are willing to speak to your doctors for you.

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Dear jean

Opening his bowels is a real problem with my husband too, it makes him very Depressed and irritable and very difficult to deal handle. He has so much fruit and fibre I sometimes cannot understand why he has problems but then I understand that IT is all to do with being immobile. He is not bedridden but no fr off it.

What I cannot understand is why the hospital cannot do something to relieve him, surely the staff must come across this all the time, what about n enema or that not possible?

I do hope it get sorted out for him soon.

Sorry, wanted to ask, PEG through the nose? I always thought it was through the stomach or am I wrong?

Take care



Thank you for your reply Dorothy, the hospital have tried everything including enemas - but it looks like the blockage is higher up and the enemas just can't reach it. It really is an ongoing problem. Unfortunately he is completely immobile, n there's no chance of a bath - but that is very good idea n might be worth exploring .

Dad was going to have a peg fitted through the stomach, but they didn't think he was well enough. It's not ideal & I think it can be a bit annoying, but apparently is safer, you do however have to carry out a pH test every time u give him food. I would encourage you if u can to talk to your husband about it now, if u can. It's one thing we regret.


Hi my dad is the same bed ridden and very poorly he hasn't been to the toilet for 10 days.until today after the district nurse gave him an enema yesterday and ask your nurse or doctor to give him an enema good my dad has been in so much pain.the relief on his face today after going was great he settled and slept all day.


My mums was also through a PEG feed .

My husbands bowel movement can be good for a few days then suddenly become much worse , I have found the Movicol prescribed by the GP to be helpful . He also eats lots of fruit and fibre . You could maybe try ORTISAN FRUIT CUBES IT COMES IN A LIQUID FORM FOR CHILDREN . I often give this as well .It is such a worry isn't it . Especially when they are not mobile enough to get to the toilet or commode themselves .


Your Father might have a problem with candida overgrowth, often due to antibiotic, steroids or other drugs, the yeast changes into a fungus, and the tentacles of the fungus penetrate the bowel wall and cause fungal spores to be distributed in the blood, causing a proliferation of the fungus generally. This creates poor energy and various other health complaints. It also causes the immune system to be in a hyper alert state, taking a probiotic regularly will help or better still, olive leaf extract, try getting one with 20% active ingredient Oleuropein (most products contain just 6%) also Wormwood, potent stuff and very good for diarrhoea.

Hope This Helps.


Dear Jean,

My father has PSP in a late stage and "received" a PEG tube in February last year. He first used Nutrison Fibre but that didn't help the constipation problem. Now he uses Supportan from Fresenius Kabi. This product is based on fish oil and is better supported by his body. Supportan also exists in normal liquid form as far as I know.


Hi I am also affected by my bowel and b ladder movements _ the main prob se are ,getting to the bathroom on time - I hsve incontinrnce pads to wear all the time and the extra confidence in good 4 m

Lol jill and a :-)

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My mom had huge bowel issues, even prior to her PSP. Not being ambulatory made the situation even more difficult. After trial runs with Sennokot S (which worked for a long while) she ended up with the most relief from a prescription of polyethylene glycol which was a powder mixed into her food (yogurt or applesauce) in the am daily. It took several days to regulate her system but completely eleviated her constipation and regulated her bowels. She got diarrhea from antibiotics and had several very runny stool accidents in the days following taking antibiotics. Unfortunately it was during the night time which was a terrible way to start her day. She had yogurt every day, although less as her ability to eat worsened. The one time that she was totally blocked we used several suppositories and finally several enemas. We had to manually remove the stool which was VERY painful for her. That is when I promised that I would never let things get to that stage again. It was trial and error. I wish that we had found the poly glocol earlier on. Keep troubleshooting - it makes one get resourceful.

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The suggestion that candida or the thrush bug could be at the bottom of the problem with gut problems is really worth serious consideration.Vjessv has a a very good point. There is a relatively new probiotic food supplement out now called Symprove. Look it up on the internet. It is being trialled now by King's College. It contains four of the good bacteria that the gut needs to work correctly. I was driven to despair when my father's GP was seemingly unable to help my Dad and allowed him to suffer 16 weeks diarrhoea non stop. My father was like a skeleton and how he suffered with pain is nobodies business. They say that it is a 3 month treatment and that it will take a month before results will show. With my father's treatment , this was exactly the case. His trouble started when he was given calogen, a dairy based fattening emulsion and then yet another dose of anti-biotics, the two just seemed to set things off. I think you will have to pay privately for it as it is not yet available on the NHS. I think it is fantastic stuff for any one suffering gut problems and who has had and several doses of anti-biotics.


Dear All ---


A while ago someone gave me a link for 'Centre for Digestive Diseases

Yes, What else but Australian, however may be of assistance? Please tell me your thoughts..... There is a section on constipation etc...

Also - What do people who suffer from Multiple Sclerosis do as I understand the condition normally brings about constipation, bowel incontinence and diarrhea - Perhaps worth linking in with MS on Health Unlocked?


Alana - Western Australia


yes, we've been through the blockage and diarhea as well, and he his on a peg tube. My husband had a high blockage and it took multiple enema's over a matter of a few days to get him cleaned out and back to normal. He takes a liquid called "Lactulose" every morning and if he starts to get backed up he takes a powder mixed with liquid called PEG 3350 (polyethylene glycol). The most difficult part was getting him to tell me about what was going on. Who likes to discuss their bowel movements...or lack of! Now he knows the consequences and doesn't want to have that kind of experience again! Good luck, I hope you get things sorted out soon, it's terrible to see someone in pain like that.


Alberta, Canada


Hi I use movicol it mostly softens the stools which I barely need at present

My main prob is that the stools are v big. And I have to wipe the off with paper and use loads of it.


Not a great way yo spend ones time but I am thankful still to have my bowel more or less intact

A smile :-)


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