Gastro discomfort....

Status
Not open for further replies.

andrewf

Active member
Joined
Nov 18, 2021
Messages
44
Reason
Lost a loved one
Diagnosis
07/2022
Country
US
State
MD
City
Rockville
My father in law (FIL) has had ALS for 3 years, started very very slowing 2020, and was not diagnosed until 2022 in June. COVID, foot surgery, and other things intervening in the process.

Walked until March of 2023 and finally said “done, can’t do it anymore.” He made a real effort to keep it up until he could not. Now, in past 3 months, he is really rapidly declining. His core is losing strength, breath becoming harder, and voice weaker. He says he notices every day. But his arms continue to work fine. Swallowing, etc. is fine.

His worst symptom, he says, is his gastrointestinal system. Constant bloated feeling, and misery-inducing. I have been getting him some consultation with a gastroenterologist but they don’t seem to be pushing a trial-and-error process he needs to find a med to help him. I mean, he has nothing to lose. I got him a state-issued medical cannabis card last week and some products to try (tablets, food item, drops) but not sure if they are helping either. Anyone have any ideas for GI problems? Miralax and gas-x do basically nothing to ease his discomfort. Maybe a low dose opiod to slow down the digestive system?

He has a care aid 12 hours daily; not all caretakers are equally good unfortunately. I really think he may just stop breathing in his sleep and die one night before his arms even stop working or his swallowing fails him. His words …. “I can live with that.” He said he prays every night that he won’t wake up the next day. Sad words to hear but I get the logic 100% and can’t fault him.

My mind ruminates on these things sometimes. I think about how bad it is, then I watch a youtube video about the Battle of Antietam or the The Somme (WW1) and the utter violent horror of those situations. I mean, ALS is better than being there. I guess. Unless you got a quick head shot wound in battle and instantly gone.

I just want to help his time be less miserable. Anain, if anyone has experience relieving gastrointestinal comorbidity symptoms please let me know!
 
I have the same symptoms Constipated for 6 days , small amount #2, sometimes no #1
Gas all night sometimes with a #2 surprise in the morning
then the fun starts

pain that is unbearable

i drink a large amount of ice coffee

i think weight loss has screwed up my colon vs my urethra

i just stop eating one meal
 
Andrew, it would help to understand what the problems are besides bloating (is this gastric, intestinal, both?) Is he still passing gas normally? Are his BMs as frequent/the same consistency as before or how have they changed relative to his diet? What is he eating/drinking and how has that changed? Does he have abnormal (for him) stomach or abdominal noises?

Digestion in ALS can be fast, slow, 50/50, etc. depending on the muscles that are weak, diet, oral vs. tube feeding, etc.

Opioids to slow digestion are generally not recommended first line, since there are other options that don't act on the CNS for that.

On a broader level, I doubt that even a PALS can coherently compare ALS with the plight of someone in another time and place, and what any PALS believes about living or dying is a very individual thing.

Your FIL is praying for death each night, so of course, you are working with him to improve his perceived quality of life. But if that isn't possible by his own definition, there is really nothing left but his wishes.
 
Last edited:
His gastroenterologist just wrote back and is prescribing him sulcrafate plus a smooth muscle relaxer. Two suggestions I actually made to her in an email (y). Well, my own mom came up with the sulcrafate suggestion.
His meals are pretty typical food, oatmeal and sandwiches and regular dinner food.
His way of describing it is "The constant feeling like I have to take a massive s#!t, but sometimes its gas and sometimes its not, and sometimes nothing at all" I dont think there are abnormal noises. Things move through him, and maybe its too quickly.

I guess I should be more specific, he prays every night that he'd be fine if he doesn't wake up, perhaps that interpretable a bit differently than he's actively wishing to die.
 
I have a similar issue. 25 years ago I had an ileostomy: I do not have a colon. Now I have a painful buildup of "gas" that will not pass, which I assumed was caused by my increased swallowing from saliva. However, I have seen a chemist with a PhD, who tells me that the gas is ammonia produced by my liver.
 
Ammonia is processed in the liver released as urea and mostly excreted in urine. Think about it gas does not smell like ammonia. It is a combination of swallowed air and byproducts of digestion. The chemist must not have done physiology
 
I've noticed Gastro Intestinal issues after getting a feeding tube 2 years ago. I have regular gas discomfort and bowel incontinence. My low fiber diet (Jevity annd Ensure formula supplements), diaphragm weakness and swallowed air from my BIPAP are probable sources of the problems. Relief comes from a variety of measures.

Enemas give quick relief for bowel difficulty;...suppositories have also helped. Senna (Prescription or OTC) has provided relief during the 2 year period. I use general strength Senna on weekdays, and take breaks over the weekend.

Gas discomfort is managed by releasing gas from the feeding tube right before feedings and 1 -2 hours after feedings. It also helps to pass gas by raising the legs of my hospital bed. I don't have use of my lower or upper body, but there are body positions that facilitate releasing gas.

I truly hope your father in law finds help to relieve his GI discomfort.
 
...water, no rice, pear juice, prunes, Senna, Simethicone, massage, Lactulose, enemas, change in Trilogy settings to relieve swallowed air, suppositories...the constant, incurable GI discomfort was part of the decision for my PALS to start VSED/Trilogy removal. Sending love.
 
magnesium, available as liquid, can prevent const. xifaxan can help with bloating and pain.
 
Motilium/domperidone is a med that helps with digestive motility, basically how long food stays in the stomach before moving through. I've been on tube feeds a year and a half now, and the med is crucial for not feeling bloated and nauseous from the formula. It's taken 30-40 mins before a meal.
 
Status
Not open for further replies.
Back
Top