My husband was diagnosed with CBD in 2019. He is now bed bound, has difficulty making himself heard and his words are very slurred. He has been on hospice for almost 3 years. About 6 weeks ago he developed sever constipation. Only an enema worked and sometimes not even that. Now he has developed the exact opposite. He has a dark brown stool that is the consistency of Coca Cola. It is sometimes so explosive that it shoots out of his brief and is on his abdomen and legs. We have tried everything. When we get him up in the hoyer, it just flows out. He has no pain and does not seem to be uncomfortable. His appetite, while not what it was, is still acceptable. Has anyone else experienced anything like this?
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Indiana-Girl
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Constipation is a very common problem for people with PSp and CBD as the brain loses its ability to control the muscles in the digestive tract. It may be he still has compacted stool inside and the leakage is seeping around the blockage. I can see you are from the USA so not sure what medical people you can call on ..in the UK we have specialist continence nurses that can explain why things happen. The enema may have worked but not completely. Just a suggestion
Hi, I agree with Sun-flowerwearer, an enema will only clear the bowels and what you are seeing is seepage around the blockage. An irritant laxative should help move the blockage together with a laxative to soften the stool and plenty of fluids; eg. Sena and Lactulose.
These are our experiences and information that I submit for your consideration:
The patient has had some 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 for a long time 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.
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.
i back up what Zerachiel and Sun-flowerwearer said. My mom has swung from one extreme to the other.. and, although I am not a medical professional, I also agree it sounds like there may be a blockage and what is coming out is what is somehow getting around it. Enemas have been required on multiple occasions. Good luck.
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Just reaching out
Severe leaning - new way to get patient into bed.
I hope I can figure anything to make my father awake he is sleeping nearly all the day!
Not Sure If My Husband is Declining
Incontinence
