Looking for people with Experience in End Stage ALS

[mysticunicorn66]

My sis has this. Despite tons of fiber, colace, Miralax and as much fluid as she can take in, it seems like her muscles just don't work anymore to expel waste. She says she feels full a lot, even though she has eaten next to nothing or doesn't drink a whole lot. She eats what she can but doesn't get much down and says she is full. We are doing suppositories, enemas, and digital removal.

Has anyone who has a loved one with ALS experienced seen this in their loved one shortly before they passed away?

 

[mysticunicorn66]

really looking for some input...needing to make some decisions...

 

[laurel]

Mystic sometimes people with ALS can have gastroparesis which is delayed emptying of the stomach--so they feel full and have trouble moving food and waste through the GI tract. There is medication that can help this. Please let your sister's doctor know and see what he can prescribe to help. Good luck.
Laurel

 

[Atsugi]

Before I answer, one caveat: Ask your ALS specialist to consult with GI. This could be a lot of things.

Now here's my experience with my PALS.

Her case was rapid: 8 months from totally healthy to totally locked in and dead. The end stage was only a week: totally in bed, always on morphine, eating nearly nothing, no pooping, catheter showed about 750 ml of daily output, which was in excess of intake.

In the last week, her belly was distended once. We relieved the pain with gentle warm massage.

A few days before passing, she lost the ability to speak or swallow, so we fed her a few ounces of Coke with a pipette, a couple times a day.

Heart rate, blood pressure, and respirations were all high during the last week. Breathing became shallower and shallower.
During the last day, she did not respond and rarely moved an eye. Communication was gone.
Then, in one one hour, resps went way too slow and shallow. Then, within minutes, everything stopped and her pinpoint pupils opened wide.

 

[mysticunicorn66]

I have an email in to the director of the nearest ALS Clinic who was seeing sis before it became excruciatingly painful to take her to the clinic (over 60 miles away in one direction). I haven't heard from her yet. I contacted sis's dr and had a consultation with him. After our discussion, he wants to try some med. adjustments. She is on a fluid pill (for cardiomyopathy) and Baclofen. He told me to stop the fluid pill, but to monitor her BP to make sure systolic doesn't get over 140 (if it does to call him). He said to take her off the Baclofen for a week and observe for bladder spasms. He thinks that these two meds may be slowing things down a lot. Still thinking though that this is not a good sign for sis. My father-in-law (also had ALS) had issues with impaction and feeling full--not wanting to eat or drink about two months before he passed away.

 

[cervus]

If you're talking to your sister's GP and not her ALS neurologist, I wouldn't take her off Baclofen. Baclofen is used for spasms and they will return if she goes off them. Keep trying to make contact with somebody from her ALS Clinic. So many GP's know absolutely nothing about ALS. Don't rely on them.

 

[Gentleman Jim]

Mystic,

Just back from the ICU for two weeks. Bowels, and such. Eddie was not able to go, we could
not make him go. Off to the ER we went. At the end of two weeks they gave him a CAT scan.

they were doing x-rays and all sorts of stuff, finally they called it a

ileus - definition of ileus in the Medical dictionary - by the ...
Ileus Definition. Ileus is a partial or complete non-mechanical blockage of the small and/or large intestine. The term "ileus" comes from the Latin word for colic.

medical-dictionary.thefreedictionary.com/ileus

I don't know if they ever nailed it, but don't wait two weeks for the CAT scan. Go for it first if you end up in the ER.

Other than that you are doing all you can, fiber, enema's, supositories, stool softners, food, no food.. etc. etc.
Each one is a little different, and yet, most all will have bowel problems.

Hang in there, pray.

 

[BrianD]

Please note that you cannot go off baclofen cold turkey... you need to taper off. Make sure you're talking to the prescribing doctor!

 

[Barbie]

my pals has needed an enema to go poo for a couple of years now. no amount of fiber, water, etc helped. He doesn't eat much either but I don't think that he is in the end stage of this disease...I just think muscles that should be moving things along are not working correctly . Your best course is to ask the several experts (ALSA, Neuro, GP, us) and do what you think is the right thing.

 

[stellfox]

As nature takes it's natural course the need to eat and drink become almost non existant and also while the doctors and so called specialists so that the gastrointestinal tract is not affected by the ALS I tend to disbelieve that as it was present in my dad and to a lesser extent my sister. The post above by Atsugi is as it may go or may be a shorter course, in my sister + brothers case the end was more breathing related problems as the bi-pap was just not delivering what was necessary. If you have Hospice on board that will be of tremendous help but there are still many other things can be happening-- sometimes a PALS feels too full as the stomach fills it allows less room for the lungs and that is uncomfortable, as far as voiding is concerned sometimes nothing works as well as some prune juice. It is so difficult as you try to do the best you can but seem to get nowhere or even improve things. I can offer this advice-- just try and go with the flow-- don't take anything personal, your PALS feels our unhappiness as well , just try and be calm and relaxed it will be of more help than most medications--

 

[Gentleman Jim]

stellfox, I take it that this runs in your family? How many have been hurt by this awful
disease?

Jim

 

[mysticunicorn66]

The prescribing doctor for the Baclofen is the one who told me to stop it for a week to see how it affects her bladder spasms and to see if it helps with the BM situation. He is not the prescribing dr for the spironolactone (fluid pill) though, that came from her heart dr. Sis also has cardiomyopathy, which was present long before ALS reared its ugly head. She also has an area of narrowing of the spine somewhere near T10 - T12. So, that is making the issue even worse. Gave poor sis a saline enema last night because the poor thing just could not poo at all and was in misery. I had to wait 5 hours for it to work though. She was wiped out by the time I left this morning at 2:00. I had to crash and get some sleep so I could go to work today. I also tend to believe that the digestive system is impacted by ALS to some extent, especially the urge to push, because I have seen this in all four people I have known who have/had ALS. Like the rest of her body, she can feel the sensations, but just can't move the things when she does feel them. Hospice will be starting on Tuesday. I have emails in the the regional ALS Family Services Coordinator. She emailed that she would put me in touch with their nurse so that I can get some other input on what kind of nursing management things that I can do at home for sis that maybe I am not doing right now.

 

[stellfox]

In answer to Jim's question, yes have lost my Dad, my younger brother and my little sister all within 3 years, my baby sister died in Feb. Leaving a 12 yr old daughter who lives with my Mom. Also have been tested and I am a positive for SOD1--A4V-- no symptoms !
All of them died within 10 months of diagnosis-- So being there and caring for them has taken up most of our families time, probably more knowledge among us 3 left than most doctors and definately ER docs -- they are clueless.
Hopeing you get your sis's issues straightenend out-- hospice will definately be most helpful, good luck and remember
this time that is left is the only time you get, The bad may be really bad but the good will be even better-- reminising on childhood
was always fun and lots of laughs

 

[Gentleman Jim]

Stell, There is a song called "Through it all" You seem to have been pretty much through it all.

What a great attitude for having gone through the fire and you yourself seem to be looking at some
flames. Flames can either purify or consume. Heb. 12:29

As I was writing on another thread, So many times it becomes more about where we are going, than
where we have been.

Thanks from all of us cals for your tranparency.

 

[mysticunicorn66]

Thanks all for your input.