My word, is this GERD?

[nona]

I'm five years in and have been on 100% tube feeding for over a year. For the past couple of months I've been dealing with thrush and a dry cough from throat irritation that I thought was related to thrush. After a couple courses of Nystatin and fluconazole, the thrush is (hopefully) gone but the cough is getting worse. It starts with a tickle in my throat, which I try to stop with a cough or a sip of water. Most of the time, I can't stop it and it becomes a full blown laryngospasm, and I often gag, belch up a little food, or vomit. Then when it settles down, I have to clear my throat and cough up crap from my lungs for a couple of hours. Then it's time for another tube feeding and the cycle starts over. I asked my pcp if this was reflux and she prescribed Protonix, which I've taken for five days.
Has anyone else experienced this? If it is GERD, should I consider going off Mexilitene?

 

[KimT]

I've had GERD for years. I have no trouble eating but, sometimes, GERD makes me gag or even be short of breath. Mayo did a swallow test two years in a row and said that was fine so the ENT there took a look and said it was GERD. I was certain it was ALS because my voice got hoarse and it seemed hard to swallow but it was the acid reflux. I've been on a proton pump inhibitor for years but I do have some breakthrough episodes, especially if I eat the wrong thing or eat too much.

What formula are you using?

 

[nona]

Thanks @KimT , yes, hoarseness too. I'm on Kate Farms peptide 1.5, three times a day. I slowed the feedings down to an hour and it helps the full feeling but not the reflux.

 

[KarenNWendyn]

It sounds like GERD with aspiration.

Definitely slow down the feedings and maybe use a pump or go to 4-5 smaller feedings per day. Sit or lie more upright for at least an hour after a feeding.
I’m having increased sensations of stomach fullness and nausea after eating and notice I’m working harder to breathe, so I think my problem is similar. I’m also on the Kate Farms Peptide 1.5 plus extra water. One of those little cartons packs a wallop. I’ve also had issues with oral thrush. We could be twins!

How were you able to achieve slowing the feedings down to an hour?

 

[KimT]

I can't lie down for 5 hours after eating or I get terrible GERD and heart palpitations.

 

[nona]

@KarenNWendyn , thrush too? That is a strange coincidence. I take in about 3 oz every 15 minutes, all bolus. I hardly do any extra water with feedings ; I sip water all day through my camelback type thin. I am sitting up all day. I can't even lean my chair back or I'll cough. I don't have much trouble in bed but I'm a sidesleeper and the head of the bed is raised.

 

[affected]

GERD with tube feedings is quite common as your digestive system slows it's easy to go too fast with a feed and cause reflux that results in aspiration.

You could consider trying gravity feeding, not bolus, or a pump that can do the feed really slowly. So sorry, I know it's just horrible.

 

[KarenNWendyn]

Tillie, please tell us more about digestive system slowing with ALS. Is that pretty typical, and do you think it is connected with respiratory muscle weakness?

 

[blitzc]

Good queston, Karen. I want to eat more but can't due to very full feeling and so much difficulty breathing. And then there is the gas issue- so much stomach gas than I ever used to have and painful intestinal gas that also affect ease of breathing. Is this slow digestion?

 

[affected]

@KarenNWendyn - it starts with Gastroparesis and @blitzc that feeling full is probably due to this - the stomach takes longer to empty. This is usually followed by a slowing in peristalsis. Now if you think about it, digestion starts with salivating at the idea of a yummy meal you can smell, and this starts you swallowing a bit more and you get your system ramped up for the meal and peristalsis has already started and everything is moving in the right direction before your first bite. Remember how hungry you could get in a restaurant smelling meals and seeing people eat because peristalsis would get your stomach and upper small intestines emptied right out in anticipation of new food.
When you combine being more sedentary due to limb involvement, with no stimulus of the smell of your food cooking, and if you have been eating a bit less and less before getting the peg, these all seem to combine to slow the digestive tract right down. Dehydration will slow things down too.

People who blend their own real food at the time the family eats often digest better simply for this one factor alone. Sometimes peg fed people find the opposite if they receive formula and find the smell of the family meal cooking makes them feel nauseous - often because they still have residual formula that has been sitting in the stomach some time and it still doesn't empty in repsonse.

Then the great question about the respiratory involvement - yes. As the diaphragm weakens, anything that puts pressure on it is going to be really noticed and so we find that position (eg laying down flat) and having a full stomach both mean the diaphragm has more resistance to work against and if it is weakening, then this causes you to start to feel a bit off, woozy, distanced, and you feel more full because of the breathing involvement ... kind of vicious circle you see?

So two great strategies are - bipap and pump feeding. Some elect to pump feed slowly overnight, then they can just top up, or if still eating a little can have absolute favourite little snacks for pure enjoyment through the day. Through the day you will then not have the heavy feelings, and your breathing will be freer with the stomach not being full so your quality of life can go up significantly.

 

[KarenNWendyn]

Thanks Tillie. That makes sense. It’s definitely happening to me as I had my tube-fed formula lunch today and immediately got very nauseated. I started to heave and threw up a bit. This was accompanied by laryngospasm and lip biting. Yuck! I was also noticing more shortness of breath. Once I put the BiPAP on, I felt much better.

As far as using a pump for a slow feeding during sleep, my concerns would be reflux and peeing. Otherwise it’s an interesting idea.

Nona/ Jessie, I hope you don’t mind that I hitchhiked on your thread since I think it’s the same topic.

 

[nona]

@KarenNWendyn , this entire thread has been useful and somehow comforting. Thank you and thank you Tillie for taking the time to describe what's going on.

 

[affected]

As far as using a pump for a slow feeding during sleep, my concerns would be reflux and peeing. Otherwise it’s an interesting idea.

Honest the pump slow drips so reflux is not going to be an issue. Peeing however, possibly but maybe a depends at night would allay that fear if it gives you better daytimes?

 

[pittsburghgal]

My husband had terrible reflux, nausea and gastroparesis. He took a lot of medicines for this but the only thing we found that helped was switching to a slow rate of feeding with a pump overnight (60 cc/hour). This eliminated the reflux and nausea.

Sharon

 

[nona]

I just don't want to eat. I know I have to but I dread it.