Bowel problems

[ncgardener799]

My husband has PSP and alternates between very loose stools and

bowel urgency/ incontinence, then no BM for 4-5 days. I think its a motility problem, not constipation. Anyone dealing with similar issues-any advise??

[Helen119]

My husband is the same has been for several years, believe this is all to do with PSP, doesn’t make a difference with what they eat, my husband take 2 laxatives daily just to try to keep him at least emptying his bowels. Sorry your going through this, good luck xxxx

[Lord77]

Hi I understand how you must be feeling it can be overwhelming at times , my husband has diagnosed PSP-PAGF which is Pure Akinesia with gate freezing , it has taken eight and a half years for them to come to this decision after many different ones which is very frustrating , Brian has over the last 4 years had the same problem , at the beginning it was 4to5 times a week with bowel incontinence , with the bladder incontinence it was easier to handle I bought him a plastic urinal with a lid from the chemist and he keeps it with him , as he cant walk to the bathroom anymore this is a real blessing , he is in an electric Pride chair indoors, but with the bowel problem , that is a little harder , at first we used pull ups which he hated , so I started to take notes to see if anything he ate triggered it off, the first thing I did was put him onto Lactose free milk products , for him this made a big difference , so the doctor said he could have become Lactose intolerant , I then worked out he did not handle oranges or mandarin , also spicy food, he also can only have fruit every other day I make him a smoothy with Banana , Blueberry, Raspberry, carrot or celery with Italian Parsley from the garden or spinach, I mix a level tablespoon of plant based protein with coconut water and Lactose free youghurt, which he really enjoys, I am still learning even after 4 years or so because of the progression of the disease. Now I am sure you understand because there is not just one type of PSP and each person reacts differently nothing works for each person , it is trial and error , I suggest you look into the different types of PSP because in some cases it it can be a mixture of them which makes it so hard , at the moment Brian can go about 2 to 3 months without a problem with his bowels , when it starts up we use pull ups until things settle down,but as I said things change all the time. I am sorry this has been so long , but I prey that it may help you a little. Love and blessings Pamela

[Poppypolo]

Hi like your husband we have just in counted ten days of very loose bowels 111 said carry on with Imodium, yesterday at last a doctor came out it is overflow now on to an enama which i have ben left with, no support at all, what is it coming to.

[AJK2001 in reply to Poppypolo]

That is shocking, poor man and poor you having to cope with that. Lets hope he is feeling better now and things are a bit more "normal"

[AJK2001]

Balancing bowels became a bit of an art with Mum. It was a bit of a battle at times both with her and the carers as they thought that if she'd emptied her bowels & the movement was loose she didn't need laxative, whilst our Community Matron said she should continue the laxatives otherwise she would block up again and we would repeat the cycle. We never got it perfect.

[Poppypolo in reply to AJK2001]

Yes I quiet agree they seem to have to take a laxative all the time this is our second time it has happen and you feel so responsible as though you have caused the problem

[AJK2001 in reply to Poppypolo]

PSP and a lack of understanding of the condition is the problem, don't forget that, you are doing the best you can. It's only natural that we feel guilt when we can't help our loved ones as much as we'd like but please try nnot to beat yourself up about it, be kind to yourself, you deserve it. Virtual hugs xxx

[LuisRodicioRodicio in reply to AJK2001]

👏👏👏👍

[Poppypolo]

Thank you for the support that is really at the end of the day we need, still in and out of the toilet and the clearing up.

[ncgardener799]

Thank you everyone for you support and advice! Currently I am giving him 15 grams of additional fiber spaced out during the day, increasing fluids as tolerated and monitor the outcome. The palliative care nurse recommended the protocol to increase bulk in stool and hopefully regulate the loose BM while not creating 5 days of no BM. Fortunately he is cooperative with wearing depends, it helps but not fully when stools are very loose. Its a trial and error process. Patience gets low by end of day, but I know there are others dealing with this and more.

[Hastings2021]

My Husband keeps saying he wants to go so visiting the toilet which is nightmare and him not going normally for 2-3 days, just starting to take Lactalulose but frightened to give him too much.

[BBW85 in reply to Hastings2021]

As husband, I too went through similar with my wife, in the end I was advised to have a commode alongside the invalid bed, which reduced most cleaning up.

[LuisRodicioRodicio]

Hincgardener799!These are our experiences hoping could be useful in your case.

• The patient has had some episodes of constipation that 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 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 7.5 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 anxiolytic (Ask physician).

Hug an luck.

Luis

[Auntbuzzy]

Our neurologist has hubby on two stool softeners every day, says he needs to have a bowel movement every day. As she explained it, if a hard stool mass develops and does not move out, diahreea develops around it, but that solid mass is still in there, so “keep it moving” seems to be working better.

[Aprilfool20]

I have MSA and have to take laxido everyday with sennaevery third day to keep me regular, no matter what I eat!

[ncgardener799]

greatly appreciate all the recommendations!!!