Peg tube

[Janie H]

I had a PEG tube inserted a couple of weeks ago and had some irritation around the site, Im on antibiotics for a few days now, I'm still sore deep in my stomach and back, I think from coughing. Has anyone else had this issue? I got a tube with the balloon and had some stitches that stayed in for 2 weeks, I believe that caused the irritation on the skin. The tube is working fine although I can still eat and drink on my own. We flush every day but it is weird that food that I eat comes up into the tube (mac and cheese turned the tube yellow)

 

[affected]

Hi Janie,
have you had the peg reviewed by a doctor or stoma nurse?

That would be your best next step as they can really identify if you are still just settling into the trauma of having a hole punched through your stomach (I say this because I think some people forget that this is quite a procedure going through skin, muscle and stomach), or if there is some granulation tissue forming that may need silver nitrate to debride away, or if the balloon is too tight.

We had trouble with a rough insertion of a balloon type, and had it changed by a better surgeon and the difference in only some days is amazing. But it needs to be looked at to decide what, if any, issue may need addressing.

Let us know how it goes

 

[Janie H]

Thanks Tillie!

 

[Janie H]

I have noticed that I am sleeping a lot the past few days, I am on all my usual meds plus antibiotics and musinex to keep me from coughing. I think that the more I sleep, the more I stay still and heal. I'm not depressed or anything, just sleepy all the time, I sleep 3 or 4 hours and awake for 2 then back asleep again, day and night.

 

[affected]

Hi Janie,
did you get the peg stoma looked at?

Are you taking in commercial feeds?

My PALS and I remember cricket saying the same, found they were really sleepy at first on peg feeds. I would say to my PALS I think your body is saying, can you just go away for a bit and let me digest this? :grin:

Other than that a lot of sleepiness is usually related to breathing, particularly CO2 retention. Have you had your breathing checked lately? Having the peg inserted and having some pain can make you breath shallower which is something a PALS wants to avoid.

 

[Janie H]

Hi Tillie, the stomach Dr at the clinic had a radiologist do the surgery since I had a large hernia in the past and he didn't want to take a chance on hitting the mesh lining in my stomach, I never saw the radiologist again after the surgery. Never saw the Dr from the clinic, I called to see about getting the stitches out and they sent me back to the hospital. I have had a nurse come out and they have sent bandages and formula, another nurse from the ALS clinic has come 2 times and took a look. I still eat fine but my breathing is not good, that's why they wanted to get the tube in now. I sleep with a trilogy machine on and I'm getting better. No one gave me a appointment to re check the site. My next appointment is 03/29 at the ALS clinic. I figure that if I have any more issues, I can always call the clinic or the stomach Dr from the clinic. I tried the formula and did fine but I had rather eat while I can. Thank you for your concern, you were the only one to answer, it means a lot.

 

[dalvin]

I'm surprised they didn't tell you to call for a follow up.they didn't give me an appointment but was instructed to call the surgeon for one. Mine this coming monday

 

[affected]

Hi Janie,
do you think the trilogy is improving that sleepiness now? It would make sense really if that addresses the issue.

I am surprised there was no follow up set up, but one thing I learn on this forum is that every doctor/hospital/clinic seem to do things quite differently.

I so agree that you should continue to eat while you can, but if you losing weight at all, I would so recommend that you start supplementing through the peg.

Do ask questions here, I'm still pretty new to the peg, ours went in nearly 4 months ago, but we have been through a few ups and downs and so I've learned a little bit ...

 

[Mar51]

Hi Janie,
I feel like we have so much in common. I was diagnosed 6/13 with bulbar palsy. Started trilogy 100 in Sept. I had a G tube done on the 17th. It was painful for a week and finally my partner loosened the outside bumper and I had immediate relief. I too only use it for water and meds at this point. There is a great blog called ALS Both Sides that you might find helpful. Stay strong.
God bless,
Mary Ellen

 

[Janie H]

Thanks Mary Ellen,
Sounds like you had a easy time, I was diagnosed 06/18 and got the PEG 01/09, I can still use all of my limbs, my speach is effected and I choke on liquids, I am strong but get out of breath easily, it could always be worse.