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[Didav]

Hi, is stomach pain common in later stages? They have done every test and can't find any reason for the pain other than it is disease related. My PAL is 58 and she was diagnosed very late after having symptoms for a long time. She was vented and now has a trache. During the past week she hasn't been eating, crying a lot, is very anxious and agitated, and feels like she's not getting enough oxygen. They had to give her meds to calm her down. It's so hard not knowing why shes having this stomach pain, is that common for ALS? She is in a type of long term care hospital that cares for trache patients but they don't know much about ALS. Any feedback would be greatly appreciated.
Thank you so much

 

[Atsugi]

In fact, someone smart stated a few weeks ago that belly pain could be related to ALS. Hopefully they'll come along soon.

Sorry to hear about this. How long has it been since her first sign of weakness?

 

[gooseberry]

Is she having bowel movements? All the meds really mess with the system.

 

[Didav]

Almost 2 and half years ago. She kept falling and having trouble with her knees and they thought she just needed knee replacement. So she had one done but then the falls were getting much worse and then her breathing became involved and they finally diagnosed her about five months ago. Thank you.

 

[Didav]

Yes, she has very regular bowel movements they did scans and there's no sign of a blockage or anything like that.
Thank you

 

[Atsugi]

Didav, up at the top of your screen you'll see a search bar. Look up belly pain, stomach pain, etc...

 

[gooseberry]

It could be anything. Gallbladder,gas,any number of things. Like Mike said, try searching

 

[Didav]

Thank you both

 

[Vincent]

Though I'm in an early stage of ALS I was having stomach pain about a year ago. I wasn't constipated but due to disease and less activity, my stomach wasn't emptying fast enough. So I had the sensation of having lunch then eating a full dinner a couple of minutes later. I was given a scrip for domperidone and haven't had trouble since.
Vincent

 

[lgelb]

Welcome and sorry you find yourself here. Another possible explanation is wasting of the muscles that normally keep the upper body from falling onto the ribs. Try yourself sucking in your stomach while seated and leaning forward. It doesn't feel good. Then try taking a deep breath.

Once you have ruled out GI disease, you might try positioning in bed and chair that elongates the body, including arms and legs. She may need better support for her limbs, head and back.

Since you said she's feeling air hunger, I assume her vent settings have been double-checked using recent data?

Best,
Laurie

 

[Texas Quilter]

The drug Riluzole gave me a lot of stomach pain. Is she on that? Once I stopped it, my stomach pain was gone in a few days.
Dianne

 

[KimT]

Stomach pain can be due to any number of things that a scan won't uncover. When I stopped gluten I got relief. I had been tested for Celiac and it was negative but, apparently, I'm gluten sensitive. Trial of probiotics, digestive enzymes, or elimination of various common food allergens can also be tried. If she is taking a formula or liquid nutrient, look for the main ingredient for protein (it will be soy, dairy, egg, rice, or combo.) I have a hard time with soy. Although I'm not allergic to peanuts, peanut butter causes pain on right side almost immediately....other nut butters do not. Some people with ALS increase their fat intake to keep weight on and their natural digestive enzymes cannot deal with the increased intake so supplementing these enzymes could help.

I have an old friend who is a neurologist. He specialized in research. He often told me that "people can get stomach migraines" and they might be related to stress, diet, lifestyle or a combination. Certainly being depressed and anxious will make any pain worse and will increase many other things like acid reflux.

This thread has a lot of good suggestions and comments.

Is someone doing gentle massage and range of motion with her a couple of times each day? I say "gentle" massage for a reason. Last week I got a therapeutic massage and, at the time, it felt wonderful. The next day, my intercostal muscles felt like I had bruised ribs. While I was on my belly, the pressure he put on my back was too much.

 

[pittsburghgal]

My PALS also complains of stomach pain. He was diagnosed with delayed gastric emptying by a gastroenterologist last Sept. which I think is the cause. He takes all his nutrition through a PEG tube and the pain seems to occur mostly after a tube feeding.

 

[lgelb]

Sharon,
If there is pain after tube feedings, understanding that your husband has delayed emptying, I wonder about temperature and what is being fed? Do you blenderize real food or use formula? Might try something different.

Best,
Laurie

 

[laurel]

Over the years on this forum, occasionally Paralytic Ileus has been discussed. The motility of the bowel lessens so food moves less easily and can cause awful pain. I think one of our moderators years ago, Joel C. who had a trach, had a struggle with it at one point. Paralytic ileus does occur more frequently in those with trachs. Didav you might read about Paralytic Ileus and see if anything fits for your PAL.