My husband is suffering with chronic constipation. I am sure this is contributing to his mood, not sleeping and restlessness. He seems more confused not answering me when I ask him if he is in pain.
I’m giving him lactulose, senna and suppositories. He has a good diet with lots of fresh fruit, veg and fibre, drinks around 2litres of water a day so at a loss as to how to manage this successfully. I’ve contacted our GP for a review but wonder if anyone else has a similar experience and how they are managing it.
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My husband the same and using similar laxatives. He’s had serious issues for three years. I keep a daily bowel diary. Continence nurse consult fortnightly last 6 months. GP discusses monthly. Once hospitalised to have bowel cleared. We have tried enemas too. My husband has been on a liquid diet only for the last 10 weeks and it’s made no difference. Picolax and more extreme options need medical supervision so I don’t give my husband those. He cannot make anything happen as the disease has killed the nerves that operate the bowel. No answers from me sadly but I shall read what others say.
My dad suffered this and sadly it was due to the muscles no longer working properly as the PSP progressed. I have no advice sorry but just wanted to raise awareness that the muscles inside also stop working. My dad's stomach stopped and eventually filled to a point where he was extremely unwell. This happened suddenly and we were totally unaware of the possibility of this as it's not something you read about often. We were focused on his swallowing and concerned about choking, we didn't see this coming
Yes. Constipation is a very common symptom of PSP.
I am afraid that our experience and the information we have collected is quite similar to what you are already practicing,
In any case, I submit my data for your consideration, hoping it may be useful to you:
Constipation.
MarkJ9 point out: “The brain is unable to control the sphincter muscles. Food won't move through the system smoothly as the brain loses ability to push the food through the alimentary canal (peristalsis). That might result in constipation and also often fluid build up”.
Seleonore93 point out about the importance of following up on inconsistent bowel movement:
"Patient was really trying to get a bowel movement and we were in there for 20-30 minutes and she was sweating quite a bit. Unfortunately communication has suffered tremendously from PSP. I noticed patient was having trouble, but wasn't telling me what was happening. Patient was standing up and I was asking her what was going on and patient wasn't speaking. Then eyes began to roll back and she lost control of her body and began to collapse. Patient lost consciousness and was unresponsive. We drove patient to the hospital and the doctor did a check up and determined that the collapse was because of her constipation and trying to force a bowel movement. We got a prescription for an enema and some medication to help with bowel movement. It was quite terrifying to see her lose consciousness like that."
On our case, constipation have been corrected for years by applying an intensive Mediterranean diet based on fruits and vegetables, abundant liquids (In particular, around 100 c.c. liquid before breakfast- always with thickeners) and helped when difficulties by the drug Duphalac (lactulose, an oral osmotic laxative), but on some patients it produces annoying internal gases. As an alternative to Duphalac we are testing "Movicol" (polietilenglicol and various salts) which is notably more active and does not produce gases. The problem is to find the right dose per day to achieve a regularity. We tryed with around 4g Movicol in the morning at breakfast alternating with a doce (1 gram) of “Plantaben” (seed shells of Plantago ovata- Ispaghula husk) with success (although there are some days that do nothing that lead to days to do much). (Higher doses of Movicol (6g / day, etc.) could produced too intense effects but, over time it will be necessary to increase the dose. Yogurts with pieces of plum (at lunch) have been of special help and maintenance. Avoiding lemon juice, chocolate, bananas and rice, helps.
Keep in mind that some opioid analgesics as well as antitussives that contain codeine favor constipation.
Staying quiet favors constipation. A program of gymnastic exercises, especially walking, favor regularity. If it is not possible to walk, a walk, even in a wheelchair, always helps.
In case of not “open bowels” in 2 or 3 days, it is interesting to consider the apply a Micralax cannula (citrate / lauryl sulfoacetate) rectally or in persistent cases a lavative. Ask physician.
It is normal that when the PSP disease advances the problems with "open bowls" are more complicated.
About three months ago and after living with PSP for 8 years, we have perceived that the remedies that I have outlined have begun to fail. Now, two or three times a month and despite regularly providing "Movicol" or "Plantaben" periods of two days are given without evacuation. On the third day we apply "Micralax" which generally works. If in spite of everything in three days have NOT evacuated, we apply a 250 ml "Enema Casen" (rectal solution) containing 139 mg / mL and 32 mg / mL of anhydrous sodium dihydrogen phosphate / anhydrous disodium hydrogen phosphate which, so far It has resolved the situation. Ask physician.
timbowPSP suggest as a good remedy: soaked-in-water linseeds”. “For bowels 'stuck' try 2 good spoonfuls of linseeds soaked in glass of water for 12 hours (hot water speeds it up). When the seeds get gelatinous drink down part or all the mixture. Maybe not instant success, so repeat the performance, and within a day or two the crap will leave you!”
In our case when there are cases of delays in "open bowles" that result in greater anxiety and nervousness than some alleviate with infusions of relaxants or an extra dose of CBD Oil.
It could later be the reverse too as episodes of fecal incontience.
My Mum has started to struggle a little more than usual of late. She has always had a good daily intake of liquids - extra jellies some days if I feel she’s not drinking as well, fruit and veggies with her meals and a fresh fruit smoothie (often with a prune Activia).
Her neuro nurse recently suggested milled flaxseed, I’ve only slowly introduced it as Mum doesn’t communicate so I didn’t want to overdo it, she’s still only having a small amount in her porridge and/or smoothie but so far so good.
I noted from online info that it’s best to check that the milled flaxseed doesn’t interfere with any prescribed meds and also to ensure that you’re drinking enough too.
The GP has also prescribed Cosmocol orange flavour powder for oral solution but we haven’t needed it so far, so I can’t comment on how this is tolerated.
Since my initial post my husband has now gone to the other extreme. Not exactly diarrhoea but almost paste like and so much. Approx every 2-3days. He doesn’t get any warning of wanting to go and then whoosh! Meeting with our GP on Wed for a review as he has not taken any laxatives so unsure what has now caused this.
My mom suffers from this as well.. and has done for years. Constant struggle. Before and after putting in a PEG. The fact that this continues even with a liquid diet and daily laxatives and stool softeners has been extremely frustrating and worrying... and confirmed for us, at least, this is a PSP issue. Good luck.
Sorry to hear this, my mom was similar and it is to do with the muscles contractions and PSP. My dad kept a daily dairy of her bowel habits along with smaller portions of soft foods ' mashed and moist'. It's a fine balance of keeping the bowels moving. Reach out to community nurses or even a dietician if you can. Mom finally got to speak to a dietician after 2 years of waiting. Take care
Grape juice and linseed supplements definitely a problem with psp in Australia we use movicol but water is everything Regularly I used to set an alarm and just do a 350ml cup 8x daily
Just read through all the comments isn't it so terrible what we all go through learning as we go no advance information or knowledge the day before my partner died we were at an appointment about aspirations and choking and I was having to go to training for choking but then he fell and hit his head the next day but the constipation was huge issue as well💔 my heart goes out to you all
Yes, as everyone else has said this is a PSP symptom. My husband had this and the doctor prescribed Macrogol 4000 10g which is an osmotic laxative. There were also a few issues with "constipation crisis" after he'd been on the loo for 45 mins and with a no show, when he would sweat profusely, go pale and was near collapse. Very frightening episodes. There was also the problem with fecal compaction (think small cannon balls) which were more difficult to pass than normal shape stools.
magnesium citrate I find to be the best start at 200 mg a night and keep titrating up until you find the right dose. I personally take at least 600 mg a night to stay regular. Magnesium oxide or magnesium hydroxide work similarly. You can also find a blend of magnesium that has a combination of magnesium oxide, magnesium, citrate, and one other type of magnesium that works well as well.
Seems u are doing all the right things - congrats!
I have similar problem and am using my good ol' fallback ..... linseeds: 1cm deep in glass/tumbler, fill with near boiling water and soak for 3-4 hours. In evening drink down or spoon in all contents. Repeat often as you like/need. Currently I am doing this daily, and it helps me to pass, tho even now with some constipation. Best wishes. TimbowPSP
I was told by a nurse to take half a packet of laxido every day so it's always in my husbands system . If no bowel movement after day 2 then up it to 1 sachet until movement and then reduce back to half after. For the moment it seems to work but who knows for how much longer
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