Not being able to eat/drink

[jeanG]

I have bulbar onset and can no longer eat/drink via mouth. It is driving me insane! I grew up, as a lot of people did, with a lot of family activities that involved food - family picnics, Thanksgiving dinner, birthday parties, etc. Also, eating out was always a treat -- dinner with friends, "date" night, dinner with mom, etc. So, eating was equated with family, friends, fun, love, togetherness. Now that is all gone. Totally gone.

When I was still able to eat a little via mouth, I would still go out and try to find something on the menu I might be able to eat. Then I started choking on everything and I said forget it. My mom says she feels guilty eating in front of me. And does anyone realize how many food and drink commercials are on tv?? It is maddening.

I have been told that tube feeding is my "new normal" but I am having such a hard time accepting it. I just don't feel like "eating" anything.

 

[lisa g]

Jean, I understand what you're saying. I still pleasure eat soft food but even with that I choke every now and then.
How long have you had your feeding tube? Sometimes the "new normal" takes some time getting adjusted to. I find myself now fixating on people chewing, it's become my bizarre pastime.

 

[Colleen15]

Hi Jean G, I am from Endwell NY. Just introducing myself. I have bulbar onset. Getting a feeding tube in August. I’m 67 yo. I live near Boston.

 

[jeanG]

Hi Lisa ~ got the feeding tube in December 2022. At that time, I could still eat some things by mouth and could still sort of chew. Now only really soft foods like mashed potatoes. Do you find that you really can't "taste" it after the first 2-3 small bites?

 

[jeanG]

Hi Colleen15 - nice to meet you! I have bulbar onset as well.

 

[SeaGunny]

My wife's favorite food was (and she misses them) is mashed potatoes. Another thing she misses was melted ice cream. Stay away from the later item!

My wife lost her ability to eat way back a year or so ago. It crushes me to see her like this and we started to eat behind her back. Since that time, I have tried to introduce flavors to her. One company had a watermelon fruit drink (very wet) which I would put on an oral sponge.

I have lemon flavored oral sponges, we keep dry, wet and wet with a mouth wash splash next to her 24 /7 and I put ice in the ice water the wet sponges are in.

Others here have suggested various juices to cut through and thin the oral secretions. As the CALS (caregiver), my appetite for food is pretty low to nil. I do feel hunger and at that point I know I need to eat. But what? It needs to be fixed like in 60 seconds. On the positive side, when I weighed 165 lbs, my doctor stated I needed to lose 15 lbs. Back at him, I am now under 130 lbs. Went from a tight 34 inch waist to a loose 30 inch waist.

 

[lisa g]

Jean, I can't say that I've experienced any loss of taste when eating for pleasure. I will add this, my experience with Botox in the salivary glands to combat excessive saliva. I received my first round of injections about 2 weeks ago. They have helped somewhat but at times I'm either very dry or have bouts of excess saliva. It's not consistent. I will say that they have affected my speech and not in a good way.

I had still been able to eat soft foods but had quite the scare a week ago. I was eating spinach ravioli last week, I don't use sauce because of the acidity that increases my saliva. I use olive oil which helps with the swallowing. I make sure that they're cut in very small pieces. When I swallowed one piece I found it got lodged in my throat. I had to alert my husband that I was choking and couldn't breathe. He immediately started pounding on my back with no luck then he grabbed me and started doing the heimlich maneuver after the 3rd time the piece came flying out of my mouth and I could breathe. It was very scary. The Botox has made it harder to swallow which will ease up (at least I hope it will) as the Botox begins to wear off.) It may not affect everyone else this way but it was my experience. I now know to stick to tube feedings when the Botox is peaking.

 

[Doing My Best]

Hi lisa g, that sounds very scary. I'm interested in how your husband did the Heimlich maneuver because I've always been afraid that if I did that on my husband, I would run into the g-tube and hurt him or pull it out. I guess the hand position would be below the g-tube stoma but it seems like it could be tricky. Of course the first trick would be getting behind my husband to do the Heimlich to begin with, since he's bigger than I am and has no torso muscles to pull himself forward away from the wheelchair. Anyway, I am happy to hear your husband executed it successfully and to know that it's possible despite the g-tube.

 

[lisa g]

Doing the Heimlich maneuver didn't come in contact with my feeding tube at all. The reason for this is that when I had the peg placed for some reason the gastro dr placed it on the right side about an inch and a half away from my bellybutton. When I went to have it changed to a Mic-key button the surgeon couldn't understand why it was placed where it was. He did an endoscopy to make sure it was in my stomach.

 

[Nikki J]

Worthwhile figuring out and practicing. Both my mother and sister required heimlich pre gtube though and not in wheelchair. If someone is obese or pregnant the way it was recommended was chest thrusts. Not sure if you could be that with him in a chair but if you google you can see video. I think they are now teaching back blows only to the general public now unless it changed again

 

[lisa g]

I think being in a wheelchair might be an obstacle. I am not in a wheelchair. It might be something to address when you go to clinic and see what they would advise.

 

[Doing My Best]

Honestly the solution has been for Steve just not to eat by mouth. A few spoonfuls of applesauce with a pill, and that's about it. It was just too stressful for him to keep trying bites even of soft things. But I think that's a good idea to ask at clinic in case he decides he wants a bite of something and gets unlucky. Thanks for the responses.

 

[MupstateNY]

iagree about the applesauce. whe somethin gets stuck, the a.s. sofens it and then it goesdown.

 

[Greeneyes]

My brother ‘s Dr. Has suggested Botox to help with secretions and phlegm which has been having a problem with. Is there anyone else who has tried the Botox with good results. I would hate to see him try it and have more trouble with speech and dry mouth.

 

[SeaGunny]

My PALS gets the Botox with some positive results (however, this can easily cause dry mouth). She also gets dose of Glycopyttolate (2 mg Tabs) as well as Atropine. We use bibs to help with the drooling as well as tissues. To thin the mucus, I give her 200 mg (Dr. recommended 400 mg) of Musinex (in reality it is Guaifenesin ). I up the 200 mg to 300 mg on last "cocktail" of the day which is a syringe of her last meds of the day mixed with 1 to 1.5 ounces of water, saving the balance of 2 ounces of water for the line purge.