Excessive use of toilet

[gretatristram]

Hello. My husband is a pALS, fairly far along in the disease. He is wheelchair-bound; his wheelchair is equipped with a Roho cushion. The Roho cushion will not allow him to pass gas in the chair, and he can't really tell if it's just gas or if he needs to make a bowel movement. He's afraid of soiling himself. He has not yet agreed to use a diaper. We're taking him to the toilet as many as ten times a day, with the aid of a Hoyer Lift. I can tell that the many lifts (each trip is two lifts, the sling, etc.) are burning out our caregiver.

Is this unusual? Is there something in your experience that may help us?

 

[Mary2]

Hi Gretatristram, You and your caretakers must be exhausted with all the Hoyer Lyft transfers. My husband is sitting on a Roho cushion and he has never mentioned not being able to pass gas. I am sure others on the Forum will have some ideas of how to help.
I wonder if he needs a medication for gas or a change in diet somehow.

 

[lgelb]

Hi Greta, is he using a feeding tube? What brand formula if so, or what is his diet? I agree that diet or hydration usually figure in. When you take him to the toilet, does he actually pass gas most of the time?

 

[Bestfriends14]

Hi Greta,

This is something we used to deal with, with my hubby. He would, unfortunately, have many accidents a day because he couldn't get to the toilet fast enough. So, we talked to his GP and he OK'd giving him one immodium each morning. This has made accidents and that gassy feeling totally non-existent. He now does one bowel movement in the morning and afterward, he takes his morning meds, including his immodium. If you wanted to try this, I would talk to his doc to see if it would work for your PALS, if he is still able to take meds by mouth. There is a liquid option, as well.

Good luck.

 

[gretatristram]

Thank you. He has a clinic tomorrow and I will ask.

 

[Janders]

I had the same issue with my husband and him thinking he needed to have a movement many times a day. Many caregivers talked with him about a diaper, but he refused. One caregiver had a good technique for speaking with him in a supportive but firm way saying maybe he would try it and it would probably allow him to sleep better. i talked to him and told him that finding caregivers is hard and if we lose the current caregivers i can't promise i will be able to replace. He agreed to try at night. It has been working fantastic and he now mostly sleeps through the night. As such, multiple transfers during the day is less an issue. DAs the person organizing his care, it is OK to speak directly and realistically as in 'I am doing what I can but this is the contribution you can make in order to keep you at home'. For my husband at least it worked.

 

[Firefighter58]

I don't know what you mean by diapers, but I use mens depends and they work just fine, maybe your husband will be more reseptive if it was not referred to as a diaper. I also have a hospital bed with rails and a commode beside it so I can wheel up to it with the wheelchair and with some assistance I can stand with the use of the rails while the commode is put behind me and then I sit.

 

[gretatristram]

thank you for your insight.

 

[gretatristram]

Very interesting idea. My husband is on a feeding tube; I’ll see if there is a liquid, and also ask his doctors about it. The multiple lifts per day, many of which are unproductive, are wearing us down.

 

[gretatristram]

Only gas about half the time. He’s afraid to skip the toilet and soil himself (I don’t blame him). He won’t wear a diaper. So we’re taking as many as ten trips a day, and it’s wearing us out. Him too. It’s a combination of hard work and monotony.

 

[Mary2]

This must be wearing you out. Does he take a medication for gas? I wonder if his liquid food could be contributing. I wonder if it is the delivery system of the food. We switched to bags so the food would be delivered slower with less bloating. My PALS had bowel and gas issues before ALS. He actually seems better about gas since he started the Kate Farms. I wonder if this could be related to his breathing some how but I really don't know.

 

[Firefighter58]

I to have a lot of gas, but find the depends reliable and the commode can be placed wherever I might need it. This saves the time it takes to get to the toilet, if I am watching TV the commode can be placed right beside me. I have been using this system for about 5 years and it works well.

 

[Mary2]

My PALS reminded me he use to have several bowel movements a day and gas. His provider suggested a probiotic with prebiotic fiber. This took about a month to work, but my PALS says it was quite helpful.