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Share your tips for dealing with embarassing “bathroom” topics
Living with ALS or caring for someone who has it comes with many challenges. Eventually, we pALS will need to deals with or need help with going to the bathroom or, eh-hem – – elimination. So, no embarrassment here, just ask away, and let’s share our tips for this seldom talked about topic.
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15 Replies
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A member asked:
How do ALS patients deal with constipation? I’ve had a feeding tube for six months and began having trouble with constipation. I do not take anything orally and make sure that  I stay hydrated using the feeding tube. Are there any suggestions out there?
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Regarding the feeding tube constipation: most PALS whose food intake is 100% via feeding tube develop some problems with elimination, possibly due to a combination of the of lack of fiber in most liquid diet formulas, decreased exercise, and maybe also part of the decreased muscle tone in ALS.
Miralax might help. Miralax is not a stimulant or a bulk laxative. It is an osmotic laxative and works by retaining water in the gut, increasing the water content of the stools. It is safe and often used to address ALS related constipation. It is used for infants and children who have spinal cord damage. People don’t develop tolerance or dependency to it. If Miralax is not enough you can always carefully move into more aggressive laxatives. (But do be careful not to overuse stimulant or the harsher versions of bulk laxatives. Using too much of those could irritate your gut. No one wants diarrhea or IBS when they have ALS!)
Sometimes a change in food formula also helps. There are some liquid food formulas that have more whole food ingredients and are higher in fiber. Two examples are “Liquid Hope” and “Kate Farms”. PALS are often able to get Medicare to cover those formulas but you will need some paperwork from your doctor.
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I have constipation because of weak abdominal muscles, lack of activity, low water intake due to choking. (no PEG tube). Â I’ve tried a lot of remedies. Â I like senokot natural with stool softener taken at night. Â Not sure if it comes in liquid but I’m sure the tablets could be dissolved for tube. Â Miralax is very good too, especially if you have a tube.
You could also try prune juice in your tube.
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80% of falls happen in the bathroom. Like many people my age, I’d awake in the middle of the night to use the toilet. But with ALS it became a wobbly walk that was treacherous even with our strategically placed night lights. Here’s how I avoid a nighttime fall and, get 8 hours of uninterrupted sleep.
I drink adequate amounts of liquids throughout the day to stay hydrated. But reduce my intake of liquids two or three hours before going to bed. I go to the bathroom one last time and then, call it a night. This simple routine eliminates the need to wake up at night, which disrupts valuable sleep cycles. (Read my full article on this topic here)
Remember, ALS affects each person differently, and symptoms vary from person to person. It’s important to adapt my examples and experiences to what is best for you. Your doctor, caregivers, and family are good resources, and may even offer more helpful suggestions.
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Hi, that is basically the approach I have been using. And then I use a hand held urinal in bed before stretching and getting up.
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My husband suffered from constipation as well. His neurologist recommended movantik (for opioid constipation), 1 ducolax pill, 2 senna tablets and 1 capful of miralox in water for the morning and at night 2 senna, and 2 stool softners. This change has resulted in daily bowel movements where before it was 4-6 days with no bowel movement.
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Limiting salt produces urine output during daytime. Salt = water retention & nighttime peeing
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I was using Miralax, or Docusate Calcium but if you can eat orally and not choke, I suggest apples, pears, beans and 3 prunes daily, which will probably eliminate the need for a stool softener. I eat a serving of Fiber One with water every other day which gives me the insoluble fiber to keep me regular, but it is dry and a bit gritty so if you have trouble swallowing or choke easily then it is not for you. Insoluble fiber should be around 70%+ of your daily diet. Feeding tubes are another matter.
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This is a timely topic in our household. Thanks for the advice. I’ll double check with medical team before starting my husband on anything. As someone else mentioned, we don’t need a person with ALS and diarrhea. A nightmare to be sure!
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My neurologist suggested I take Miralax (Polyethylene Glycol 3350 Powder) and it works well most days. When I go two days without a visit to the bathroom, I take two stool softeners and usually have success. I know drinking water helps but I sleep a lot and forget to hydrate.
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I have long wondered whether semantics is relevant to this topic. Here in the UK the bathroom is where we go for a bath. We go to the toilet or loo to ‘relieve’ ourselves.
However, the debate about how to avoid constipation is valid. Having spent three days as a sentinel on a clinical trial being checked every four hours at least, eating very filling hospital food and copious cups of tea, I ended up ‘bunged’ – constipated. This was due to having no time for a long trip to the loo! Back home and back to normal now. Return to the trial in 10 days and determined to take care of gut health. My gut biome is important as is my sleep. Hospital beware!
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I’ve had recurring/periodic issues with constipation since my diagnosis in March 2020, and it has become a priority for me to try to stay ahead of the issue. It’s periodically a pretty severe issue for me, and I’ve eliminated bananas from my diet and reduced other foods that tend to constipate. To stay on top of things, I take fiber supplements (Metamucil capsules) and a stool softener (Colace) daily. If I get backed up, I will take Miralax, though I’ve had to employ harsher methods on a few occasions. As noted above, it’s become a pretty important priority for me to stay ahead of the issue, and my strategies appear to be working pretty well these days. Thanks, Dagmar, for starting this conversation for us.
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Is anyone else experiencing the phenomenon of leaking copious amounts of urine about 30 seconds after standing up? Gravity works! I started with pads but now wear diaper briefs which work well but are difficult for me to change. I have to use a walker to get into my bathroom because my wheelchair doesn’t fit. As I am more unsteady now I had to find another solution. I now have a potty chair w arms next to my bed. I can get to it w my wheelchair and get on it in time, most of the timeline . It has saved a lot of diaper changes. The next chapter will involve a bedpan; does anyone have tips on how to manage transfers to toilet or using a bedpan while lying in bed?
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Lake Meri,, I am having trouble transferring to the commode. My motorized chair, which I prefer to use, is too high and too wide to make the transfer. I can’t get it close enough to the commode. Now I am transferring from my motorized chair to the manual chair every time I have to use the bathroom. Tiresome and tedious. I guess I will consider Mary‘s option of using a bedside commode but again I don’t think I’ll be able to transfer to my motorized chair. Next step is the dreaded Hoyer lift.
But what I’m really looking for is a way to transfer from my higher motorized chair to a standard commode. Thank you so much for your suggestions!
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Nina, Do you have an adjustable height  hospital bed? I have one on loan from the ALS Association. It makes it easy to get from the bed to the bedside commode. Or could you put one those raised toilet seats on a standard toilet to match the height of your power chair?
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