Problems with bowel movements

[ChesterB]

I've been experiencing difficult BM's for about a month and I'm seeking advice from my fellow PALS. It seems that my BM's lately have become difficult or impossible despite constant use of MiraLax, other fiber laxatives, and even prune juice. My ALS doctor said that it's constipation, but I think it's another muscle weakness/atrophy situation. Have any of you had this experience?

 

[Jimi]

Hi Chester, fellow machinist if I remember correctly. I have had the same problem since about 8 months prior to getting my trach in September of '21. I had never had issues in my life before. I found the only way is to manually dig it out every four days. I only use the feeding tube and only need 1200 calories per day, so it is not that much. It is pretty unpleasant but you can get used to it. The benefit is I am very consistent and have no accidents .

 

[KimT]

First, you need to make sure you are getting enough water and natural fiber from fruit and vegetables. If you're using a feeding tube, you can put some high fiber fruit mixed with water in a Vitamix. Raspberries are great.

You might want to try stopping dairy and see if it makes a difference.

Plain glycerine suppositories work very well. Stool softeners may or may not help. Magnesium will definitely help but the glycerine suppositories work wonders for me.

 

[Jimi]

I don't have a muscle left on my person. The only way I am going to go #2 on my own is if it's diarrhea. So rather than wear a diaper all day , I will take the unpleasant 5 minute dig every four days. Sad but true

 

[Lori7]

Hi. I have trouble with my bowel, but I’m still eating solid food, so every day I eat 2 oranges, 7 prunes, a handful of raisins, 2 plates full of raw vegetables, and 2 helpings of vegetables with dinner. I also take lax-a-day every day and drink a lot of water. It’s still very difficult to move my bowels with all that, so, if I miss 3 days without going, I take 2 senokot tablets at bedtime instead of my daily lax-a-day, for one day, and that starts me going again, and I go back to my once a day lax-a-day the next day.
Constipation was one of my first ALS symptoms, about a year before my diagnosis, and it took a long time to fix it. I imagine it will be a problem again if I get a feeding tube, because I’m getting a lot of fibre from the solid food I eat.

 

[rao]

do you still have full bladder control? I tend to use enema by day 3 and if that fails then is manual digging time and is far from pleasant. I wonder if a colostomy will be a much better qol option.

 

[ChesterB]

Thanks everyone for the great advice.

Marty

 

[lisa g]

I'm not sure how mobile everyone is but, I find having a bidet toilet seat helps. The water flow can be used to stimulate the muscles making the urge to have a bm.