After 8 years with PSP, we had achieved a "certain" regularity with respect to the "open bowls" by applying "Plantaben" daily and intensifying the fiber diet such as fruits, vegetables, legumes, etc., minimizing the astringents such as potatoes, carrots , cheese, etc. In the event that we reach three days without "working" we apply "Micralax" which generally works.
The problem is that after a couple of months and despite the fiber-intensive diet, it is very much frequent that 3 days go "without working" and it is necessary to apply "Micralax".
We observe a phase change, like a new stage.
Have you seen something similar in other PSP patients?
Have you found a solution to achieve a more regular situation?
Thank you.
Luis
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LuisRodicioRodicio
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It was the same with Larry. Feast or famine. I would adjust the laxative I was using according to how things were going. When things really backed up enemas got used.
Increasing fluids was the best solution for my husband but not very helpful advice if your loved ones have difficulty drinking. Once my husband had a PEG fitted constipation disappeared. The PEG isn’t wanted by everyone though but it certainly improved many problems, especially bowel movements. If your loved one can still drink without choking, try giving him more fluids. It may help.
This was the bane of our lives, although Steve was always constipated during his whole journey. In the end the only thing that really worked was a regular enema from the district nurse and I had to kick, scream and generally plead for every single one. Not much help to you, I know, but it is one battle you have to win, with the professionals. I will never forgive them for the anguish they caused Steve. He spent the last two years of his life in pain of needing to open his bowels and not being able to and no one cared!
Perhaps you can research abdominal massage for constipation.I worked in long term care (United States) several years ago and there was a patient who was admitted to our faculty. Her husband instructed the staff that would be caring for her in a process of abdominal massage and positioning of her body to assist with bowel movements. I was not working in the area she was being cared for , but I recall other staff mentioning it and how effective it was. She was totally bed ridden. Hope this helps.
We use Lactulose 20-30 ml( by PEG) twice a day and he’s usually regular. Occasionally 3 days pass and we have to convince him to take a dulcolax suppository. It works like a charm. Good luck
My husband suffered mightily from constipation the last year or so. If he went 2 days without BM, he would get very agitated and miserable. I think it was the only time he indicated that he was in pain. Everything that had once worked didn't work anymore. His problem was so high up that the only thing that worked when suppositories failed was an enema and even that was a problem at times because of where his problem was. This was something that he complained about pre-PSP too. It was just magnified at the end.
For us and from a couple of months, spending 2 days without BM is quite frequent. On the third day without BM we apply a suppository (Micralax) and at the moment it works acceptably but we begin to observe more difficulties. Only a couple of times in 8 years have we used an enema. At the moment I am collecting information, preparing ourself for a future that I see coming more complicated.
We use a marvelous natural laxative called Colax...aloe vera based. Now Ian is pretty much bed bound, like many others here, his bowel movements seem to dominate our daily conversations!
I have found that lactose in milk seems to bloat him quite badly, so I avoid that and buy everything lactose free. Also white bread is being faded out, a great loss for my dear beloved who has always been a big fan of soft white rolls! Sometimes I feel like such a kill joy!
Bloating seems to be big cause of discomfort, along with occasional constipation. I wonder if anyone else has found this an issue. There have been times when I just wanted to stick a pin in and pop him like a balloon! However, going lactose free seems to have helped.
Regarding lactose, we have NOT perceived the typical problems of intolerance: abdominal bloating, colic, diarrhea, flatulence and nausea. But each patient is a world.
Yes, we have had problems with flatulence in menus with vegetables or legumes, so necessary for health and good intestinal function. Traditional Spanish cuisine adds a pinch of "cumin" to the stew that is cooked together with the other ingredients and this usually stops flatulence but, on the other hand, gases help to open bowles.
I think it is a question of balance that we have not yet achieved.
And yes, also in our house bowel movements seem to dominate our daily conversations!
Ben took daily medication in the form of sachets that I added water and thickener, always added a decent flavoured fruit cordial to disguise the taste too. I had to spoon feed it to him and he always screwed his face up and was glad when it was over but it seemed to do the trick. I think it was called Laxidol if I remember correctly. K xx
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