Peg Feed advice required

They have me down for a peg feed in six months, does it really make that much difference to people’s actual energy levels?

Welcome to the forum. The peg does make a difference in energy levels because you get so many more calories per feeding. With my dad (Bulbar Palsy) it took him forever to try to eat. He would have a hard time swallowing due to Bulbar Palsy / swallowing problems. This was so much easier, he would feed through his peg and be on his way. It also helped him stop losing so much weight. I would not wait to long to get the PEG, Some PALS wait to long to get it and some are stuck with the breathing tube because they have to do the surgery quick because of compromised throat issues. I have heard on this site where they did not use the breathing tube for the surgery though. I guess it depends on the Dr. & hospital. You can still eat the regular way & PEG too.
The surgery was like 20 minutes long and there was not a lot of pain. Dad came home the next day. It's better to have it in place and not need it, then to need it and not have it or too late to put it in. With my dad, some insurance companies will not pay for it if you can still eat. All dad could eat was apple sauce and Ice Cream, we could not let anyone at the hospital know that. I guess this is where it is ok to tell a little white lie sometimes. It also made it easier to take his meds. He would crush them, add a little water and put it in his PEG. When he usually took his meds before the PEG, sometimes they would be stuck and he would not be able to get them down. Good Luck to you & I am sorry you have to be here. Alot of wonderful, smart people on this site that are more then willing to give advice on everything. Alot of people here have already been there, did that.

PEGs are wonderful for helping to combat weight loss. Weight loss is a tremendous issue with PALS as we lose our ability to take in enough calories by mouth due to swallowing issues. Some research shows that maintaining weight contributes to longevity. PEGs are excellent for maintaining hydration which will contribute to your overall comfort level. They also can reduce the odds of aspiration pneumonia due to choking. If you're still able to swallow them safely, you can continue to take in your favorites by mouth and use the PEG to help maintain your calorie and fluid requirements. As eating becomes more difficult you may find it very tiring as meals take longer to ingest safely.

The use of a good heavy duty blender may help you to continue with certain foods as many PALS report that swallowing thin liquids (water) seems to give the most difficulty at first. There are also thickening agents that can be used in the thin liquids to make them easier to swallow.

You'll find several good discussions about PEGs in the archives here on the forum .

Many of your tablets may be dissolved and given through the tube as well.

Thank you both, the Wife being a care assistant, (but never having worked with anyone with MND) keeps saying my life is over once I’m on a peg feed.

I looked the actual operation up on youtube too, it told me everything except the energy levels question, which you’ve both kindly answered.

I wonder why they suggested 6 months down the road.

My mom had her PEG put in when her FVC was still above 50%. She didn't need to use it for a few months and is now primarly on it for her nutrition. She has her meds crushed and mixed in cinnamon applesauce and takes in by mouth. She also still drinks her coffee, water, tea and juice through orally.

It is a very personal decision but please know, it does not mean life is over if you decide to go ahead and have it placed. If you are interested in one, it is better to have it done when the risk is lowest and then its there when you do need it/want it.

Thank you both, the Wife being a care assistant, (but never having worked with anyone with MND) keeps saying my life is over once I’m on a peg feed.

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I feel the opposite is true. Choosing to get a PEG tube is the choice to still get nutrition after you are unable to swallow. My husband is scheduled to get his on Monday. I want to talk with the surgeon about a Mickey button though. Looks quite a bit more comfortable. I do agree that this is a very personal decision, just as to vent or not. My husband has chosen not to vent and I completely support his choices.

My husband just got his tube on Wednesday after refusing to get it for 6 months and dropping 50 pounds. He finally chose to have the surgery because swallowing was so difficult. His comment yesterday after using the tube, "This is the first time I've felt full in 3 months." Best news that I had heard in a while. For him, the tube meant losing independence which is so valuable to him. As a caregiver, I would've preferred that he'd done this sooner, but I fully understand his reasons for not wanting to and tried to make eating as easy as possible for him. I respect and support his choices as well.

Thanks all,

The Mrs. works as a care assistant and thinks she knows it all, she reasons that with the peg feed in I’m giving up (when without it I won’t be able to eat) she has never yet worked with anyone who has ALS, hence judges the peg feed from other unwell people

I have Progressive bulbar palsy and she assumes I will live another ten years, assuming she is more qualified than the specialist Neurologist too, I only wish it were possible

I got my peg in October then had it replaced in January to a button type. At first I just used it twice a day with Iso a supplement. I ate what I could and took my pills with yogurt or pudding. I still drink coffee and water in small amounts. I get Iso four times a day now and eat blended or purée food. My weight has not decreased since I got the tube. It was the right decision for me.

You're best served getting it before it's really needed--while breathing is still good, etc. It can be used as needed until it's needed all the time. It's certainly not over because of a PEG. No worries there

Just hope I'm strong enough when it comes to it, I'm still eating normally just now although taking forever, and very slowly in little nibbles, it does often go down the wrong way too

Then please talk to the doc about getting it sooner. You do NOT have to use it for your meals every day every time at all. I have worked with people with PEGs.

Barry hadn't had a 'meal' in years. It's a 20 minute operation, I believe. Once it heals--you likely won't even think about it. Nutrition is sooo very important.

I'd ask the mods to move this thread for you to the ALS side rather than PLS--where there are more PALS to read and advise. I know you have COPD--so sooner for you is much better than later, when surgery becomes more risky.

TY notme, I think they view me as still able to walk about, so fit enough for now, could be wrong but fingers crossed that I live that long