PEG daily maintenance?

[TFB]

I'm scheduled for a PEG in three days, but I'm still not sure I'm ready to take that major invasive step yet. My doctor recommended it in July and I've put it off until now. He recommended it because I told him then that I have trouble swallowing one medium sized gel capsule. I take 15 pills a day and that is the largest one. I'm still able to eat pretty much anything and enjoy eating. It takes me about 30 minutes to eat a meal. I have bulbar onset. My first symptom was slurred speech in summer of 2021. I cough some when drinking liquids and from saliva. I fear that the PEG will disrupt my appetite and my sleep. Last week at the clinic, my FVC was 85% which my doctor said was normal (80 to 120% of predicted). I want to delay the inconvenience and upkeep that a PEG requires as long as possible. I'm unable to speak so I am at a real disadvantage when it comes to asking questions about the PEG and other topics at clinic. I've been reading up on PEGs online and also on this forum. It's all I think about ever since I asked my wife to go ahead and schedule it. If I'm not using the PEG yet or only for medications, how much daily maintenance is required?

 

[Nikki J]

It shouldn’t disrupt your sleep or appetite once you have recovered from the procedure. If the tube does get in the way you can later have it replaced with the button type

You are smart to get it now. Really. You have a couple of early warning signs and it is possible that if you get sick things will decline fast.

Again after you heal the maintenance should be minimal

I have written here many times my sister delayed far too long and ended up with refeeding syndrome. We got through it another pals with the same thing same time did not. He died. They were both otherwise young and healthy. I have promised myself to schedule a tube the first time it is recommended

Good luck with the procedure

 

[TFB]

Thank you for the quick response. This is a very difficult decision for me.

 

[ReginaS]

It's your life and your decision. My PALS decided not to get a feeding tube and I think he really, really suffered in the end. Well, I don't only think so - I saw it and it was very hard and traumatic to see him suffer in this way. Prior to that, when he made that decision to not have a feeding tube (against the advice of several physicians, nurses and therapists) it was unimaginable to imagine or understand what it's like when you cannot swallow any longer, when the dehydration sets in, when he was hungry and could not get anything down bc swallowing was impossible - not only difficult but impossible - that included any food in any consistency and liquids as well. There was very little that I as a caretaker could do but watch and hope it would be over soon as it sure did not get any better. The feeding tube would have kept him hydrated and not hungry. As much as I would not want a feeding tube I personally would get one to not have to die this way.

 

[Marieb425]

TFB - my husband was very resistant to this and he struggled through trying to eat and drink for what felt like far too long. This caused stress/trauma for myself and our kids (and I’m sure for him).

His decision to get a PEG tube was a huge relief and that’s given us much more time together. He can’t swallow anything anymore, except for a few sips of water, but I put all his formula and medications into his PEG tube. He started out with the dangler and then switched it to a mic-key button and we do prefer that because the dangler one was starting to get gunky inside even though I always flushed it generously with water.

I tried not to pressure him too much since it was his decision - just like it’s your decision too. But I am so thankful he did decide to get it.

Edited to add - he’s had the feeding tube since august of 2023. If you have any additional questions you can message me.

 

[lisa g]

TFB take it from someone that has a peg, it's not a big deal. I've had mine for over 4 years with no problem. It takes the stress of struggling and choking while trying to swallow food or liquids.

I originally had a dangler placed and as soon as I could had it replaced with a Mic-key button. It was the best decision. Having a peg will not disrupt your appetite or sleep.

 

[DMP]

Hi this is very hard. I'm thinking of getting a PEG while I'm more well and I also have bulbar symptoms. I cared for my dad with MND bulbar and watched him aspirate and get pneumonia. I am scared of getting chest infections. So plan to get the PEG, but I dread the thought of it. It's a personal decision. I wish you all the best.

 

[Firefighter58]

I have had my tube for about ten years, I use it for meds only, my choice. I find that I can feel the need to get a new one about every six months, I have a nurse come in and change it and it takes about five minutes, I find it is no inconvenience at all. I may never need it but then I may require it tomorrow with this disease you never know. My opinion is that it was a obvious choice.
Al

 

[TFB]

Thanks for the info. The surgeon postponed my PEG a week because they were short staffed. It didn't hurt my feelings! How long before they will change it to a mic-key and will private insurance cover that procedure? I'm one year away from Medicare eligibility. My initial concerns were appetite/nausea and sleeping, but I should have been more specific. Will I feel it inside my stomach? And what happens if I roll over on it while sleeping? I'm not sure of the size and flexibility of the external part. I assume PALS tape the tube to their belly or wear a wrap of some sort. I wish I had asked the surgeon to show me the PEG when I had my consultation. I've looked at images online, but there appears to be many different types. All who replied are rock stars in my book! This forum is a wonderful source of information and support!

 

[SMJgal]

Hi all,

I had a PEG placed in April followed replacing it with a Mic-key button in July with no issues. My apprehension prior to the procedure was much worse than the procedure itself. My neurologist recommended it because my FVC was <50 and he didn’t want me to have any breathing problems while on my back during the procedure. Medicare and my Supplement fully covered both procedures. So far I haven’t needed to use it but I am glad I had it placed. The peace of mind out-weighs the inconvenience of daily maintenance.

I taped down the long part of the PEG tube, but had to be very careful not to irritate my skin with the adhesive. It took 4+ weeks for my tummy skin to recover when it did get irritated.

Neither sleeping nor pain were issues for me. Sometimes when I am really bloated (which seems to be an ongoing problem for me) I can feel what I think is the balloon moving around. It is an uncomfortable feeling of pressure, not really pain. I am also not healing as well as I would like. I have granulation tissue around the stoma which gets red and bleeds at times.

Sorry if this is more than you wanted to know! Hope it is helpful to you.

 

[TFB]

Thanks to all who replied. I had my PEG placement three days ago. The pain is okay unless I cough, yawn, take a deep breath, or try to get in/out of bed or onto/off the sofa which leans back. Any event that tightens the abs hurts. I'm sure it will get better and this will have been worth it when I can no longer swallow food and liquid by mouth. I'm only using the tube for the liquid hydrocodone they gave me for pain. We flush with bottled water daily. My tube comes straight out 90 degrees from my belly through a clear plastic four lobed object. I have a clear plastic thing stuck to my belly a few inches over from the stoma which keeps the tube from getting pulled out. Then, the rest dangles just below my waist. My tube has a large port and a small port that are both capped as well as a clamp on the tube. I assume the small port is to pop the balloon inside to remove and replace. I was thinking the tube would have a elbow on it after it exits the belly so it's a lower profile and less obtrusive. I have little to no blood or drainage from the stoma. We clean around the stoma once daily. The procedure only took 30 minutes under propofol (twilight anesthesia like they use for a colonoscopy). Nobody mentioned the mic-key option to me which sits flush on the belly. I didn't ask the surgeon about it at my consultation because, at the time, I didn't know about it. I'll post an update in a few days.

 

[MarthaC]

My husband is schedule for one in two weeks. I look forward to more updates from you!

 

[santimo]

I just want to share that I do dread this stage, but reading these responses and everyone's support has been encouraging and heartwarming.

 

[TFB]

It's been one week after my PEG placement surgery. I can now yawn again with no pain. I can now transfer without assistance in and out of bed again with little pain. I can sleep on my side again. Coughing still hurts the stoma area a little, but it's getting better. Home health told me to hold a pillow on the stoma site when I cough. It helps a little, but I never know when a cough is coming on! I'm not using the PEG yet. We flush it with bottled water and change the gauze pad under the plastic piece that covers the stoma daily. Showering with it is no issue. Remove the gauze pad before. Dry around the stoma afterwards and put on a new gauze pad. I took very little liquid hydrocodone. Maybe 5-6 doses in the first three days. We did put the liquid hydrocodone in the PEG because the taste is so strong. FWIW, I am a 64 y/o male who was initially resistant to a feeding tube. But, after reading some of the stories on here from caregivers of PALS who refused a tube, I decided I didn't want to put my dear wife through that. I realize the PEG will be my lifeline one day.

 

[Nikki J]

It sounds like you are right on track with recovery. Part of that is you didn’t wait too long. It is a true gift to your wife - one she may not fully appreciate as you are sparing her the experience you read about. I am happy for both of you. Thank you for sharing