Joy204010

[204010]

Can any one advise on the best thing for constipation. Husband who has PSP is really struggling. Have tried fruit, prone juice, suppositories, Senokot at night. Don’t know any thing else to try. Joy

[Manonfire]

hi, my husband has the same problem, he was recommended to use Lactulose it’s what they use it in hospitals so I am told, and it works well.

[Doublereeder]

My mum is on laxido powder sachets for constipation which she gets on (NHS) prescription if you wanted to ask your GP. Good luck!

[Northstar1]

Hello we use laxido sometimes two at once. Also two suppositories. Ask your GP to refer you to the Community Matron Service. Don't know what we would without ours.

[LuisRodicioRodicio]

Hi 204010!

Episodes of 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 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. At this time we are trying 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 in the previous paragraphs to achieve a regular "open bowles" 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.

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.

Hug and luck.

Luis

[timbowPSP in reply to LuisRodicioRodicio]

Very useful info there Luis - thanks. If my go-to remedy of soaked-in-water linseeds fails then I'll use one of yours! Cheers Tim

[Rose1sunflower]

Like many others have said, Laxido was prescribed for my husband. This and a water bottle that has a straw has helped.

[Heady]

I am afraid this is one of the on going battles that the professionals do NOT. Take seriously. Well they didn’t in my husbands case. I had to fight to get the District Nurses to come and give him an enema regularly, because nothing else worked. Finally got a the Bladder and Bowel experts involved. They were going to give Steve, sorry forgot the procedure now, but it’s what the celebs have to lose weight, but he died before it was set up. She said constipation was a big thing with people with neurological illnesses. My doctor must have been AWOL they taught that one!

Best of luck, this is one battle that you have to be on top of.

Sending big hug and much love

Lots of love

Anne

[Scottoppy]

Get a prescription for Movicol or Laxidos very gentle but effective eventually

[timbowPSP]

Hiya .... I am male 81, with PSP past 5 years, and occasional bouts of constipation. I am on the Med vegetarian diet (like someone has suggested to you). I find that lots of fresh veg and fluids is really important, with exercise. 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! Good luck, and welcome to let me know your success. TIMbowPSP

[LARWLSN]

Hi... my mom is heading into end stage and has been dealing with constipation .. horrible constipation for well over a year now. We throw everything we can at it and call a win if we manage to get anything out of her every three days. What we are resorting to now at this point is having her health aides pull the movement out of her manually. She simply can't push on demand or by instinct reliably any more. Good luck!

[204010]

Thank you all for your very helpful comments. Never thought his problem going to the loo was any thing to do with his PSP. What next. Best wishes to all of you coping with this terrible illness. Nice to know I am not alone in this struggle. Joy

[WifeLilyRose]

Constipation and the opposite will be a constant issue all through the PSP journey. My late husband was cared for at home and I was constantly monitoring his bowel movements and adjusting doses of medication week by week. Our saviour was the hospice outreach nurse who, after one particularly distressing trip to A & E with a suspected blocked bowel, advised us to use Laxido powder in variable doses alongside Senokot ( available as a liquid on prescription.) This is because as PSP progresses, signals from the brain to the digestive system stop functioning. The Laxido dose taken in the morning does not stay the same. Its job is only to soften the consistency of the pooh, so the Senokot dose at bedtime is also needed daily as it works in a different way, helping move othe waste matter along the gut. This nurse was the only professional to explain this all to me, so from then on she advised me on how much to vary the doses, all the time liaising with the GP and district nurses.

Sorry about the long reply but this was a game changer for us! As a carer of someone with PSP, one has to become an expert on so many levels and be prepared for constant change and adaptability. I wish you well and do hope I have been helpful.

WifeLilyRose.

[204010 in reply to WifeLilyRose]

Thank you, you have been a great help. Did not connect PSP & constipation. Some think new every day

[Bemyers]

My husband takes aloe tablets and magnesium. And he drinks a gallon of water a day because he takes numerous supplements. No problem with constipation.

[PMPL]

Hello.Laxido may help. Soft and gentle.

[204010 in reply to PMPL]

Have just got some, just hoping they work. Thank you

[PMPL in reply to 204010]

Thinking of you ...everything crossed it helps .

[Cinema4]

kiwi fruit or apricots worked for my husband!

[LFG3]

Our Dr recommended saline enemas. Works like a charm in about 10 minutes so once you put the saline in, put them over the pot immediately.

Also Docusate sodium 250 mgs to keep the stool soft. Bought on Amazon.

[knittingannie]

hi linseeds are great can be bought ground into fine texture added to cereal /yogurt start small and increase -if not accepted fybogel is very pleasant and well accepted and effective

[Kayelless]

US patient here. Don’t wait too long to do something. I ended up in the ER where a doc did a James Herriot on me up to his elbow then said “That should do the trick” and left the room. Yup it worked but I felt like a cow that’d been to the vet. I don’t get concerned until 3 days at any time— that’s just how my system works — but I don’t want to ever do that again.

[204010]

Thank you all your help with the constipation issue with my husband. Have used the Laxidos & at first thought it was not working. Then o my god it kicked in , had poo every were before I got him on the loo. What a mess. Think I gave him to many. 2 days of it running from him, not good. He has said this morning he still feels like he is bungled up . Staying near a loo just in case