my hubby got his PEG done today. tremendous amount of pain. he says he feels like he has been kicked in the stomach by a horse.
we did not get any "paper" instructions on the PEG just oral instructions.
he is not very happy with the doc that placed his tube, especially since the doc told him he shouldnt be in that much pain. grrrrrr!
he ate (normally) tonite and now some fluid seems to leaking from the tube, should this be cause for concern??
i am headed to the pharmacy to get a syringe to flush it. the doc said to start flushing twice a day starting tomorrow.
again, he is in agony--it breaks my heart to see this--thank GOD he had some vicodin left from his port surgery, since the surgeon today didnt seem to think that he needed any prescription meds.
feeling so helpless....
teresa

The leakage from the tube is normal. Not a reason for concern. Whenever you have the tube open always keep the open end up high, otherwise the contents of your stomach with drip/run out. For me, the pain let up completely with in one week. Have him stay away from carbinated drinks and gassy foods. They are not his friend! I experienced a bit of pain each time I ate during the first week or two. It was explained to me that the stomach moves around as it is going through digestion, and this PEG sort of tethers it down, therefore making it hurt. Good luck to you and him both. I saw all the work my husband did for me.....I saw the pain in his eyes as he hurt for me. It takes a heart of steel to be a caregiver....you, too endure alot.

thank u. i will definately take ur advise!!

Teresa,

PEG's are a point of much dispute on this site, so I hope this stays to point.

I had a PEG placed and I did need it...but it did hurt like hell. They couldn't place my PEG "traditionally" by snaking it down my throat and pushing through my stomach and abdominal wall, due to how thick my abdominal wall was. So I had to have my stomach inflated with air, sedated but conscious and a local administered and then they cut into me...I felt every minute of it. What was worse was the pain I felt for days afterwards as the air escaped my body.

Leakage is normal sometimes I had this greenish booger/snot looking stuff seeping from the tube site. The site of the tube would get irritated by clothing, movement etc...so minor redness will happen as well as the site being sensative.

Teresa, you have the hardest job as the caregiver, use this site as much as possible for the valueable information and advice. Knowledge is power, the more you know about what's to come the less helpless you should feel.

The only things you can control through this is:

1) Medical team, make sure you are getting the best Dr's you can, start at a Cancer Care Center or like MD Anderson. You may only get one chance to beat this disease, using second rate drs is a recipe for death.

2) Attitude, keep the faith, keep hope alive...you don't have to sing hymnals and dance through the street spreading the "magic" but see the upside.

3) Nutrition, you have to see that he's getting the calories to help his body fight this crap.

the rest is up to his medical professionals and how his body reacts to treatment.

Good luck

Eric

So sorry your husband is in pain but give it a week and it should go away.

The drainage is completely normal and you will continue to have very small amounts of drainage while having a PEG, pink to lite reddness is normal at the insertion site.

Don't forget to flush before and after each use. Depending on what FR your husbands PEG is, be careful pushing anything other than formula down. Mine is a 12FR and I'm too chicken to push pureed food down it because I don't want it to get clogged.

HTH!

Hi Teresa,

My husband Steve's peg hurt him badly for more than a week due to an infection at the site. We were told it should settle after about 4 days out from it being inserted but at 4 days the infection kicked in. My best advise is to try and avoid this as much as possible. It resulted in an 11 day stay in hospital for Steve and a massive cocktail of antibiotics for the 4 bugs he had at the site. Keep it clean, keep it clean, keep it clean. I really can't say it enough. It's an open wound so needs to be looked after. Steve still to this day keeps it covered with surgical padding and makes sure the site is cleaned regularly. Also we were told to flush it 4 times a day and definitely after each use.

All the best to you and your husband Teresa. Stay strong and stay positive. Remember always that when times get tough that all of us are here for you.

Wendy

Hi Teresa,

All great advice. Mi hury alot for two days then only a little. I did have the discharge, looked like snot. I also puta dab of neosporin on it each day. My doctor had arranged for a home nurce to come by and look at it a couple times a week. Another group supplied the food (Jevitey) and boxes of syriges.

tell your hubby to hang it there

Steve

Hey Teresa,
We are with you and Steve. I do not remember the pain (thanks hydracodone the memory eraser). The site should respond well to neosporin or Biaffine(?). I know it hurts but he should also turn/rotate the peg every day. The spinning will keep the abdominal wall from grafting/bonding to the device. I spin mine a full turn in the shower with no problems. If he is unhappy with the doc then I recommend replacement or a heart to heart consultation. This is no disease to fight with a sub par med team. Good luck with this part and know that you and Steve can overcome this painful bump in the road.

thank u all for the advise!
as soon as i opened the tube to flush it, alot of air came out. he actually said that relieved some of the pain--who would have thought.
he said today it is still painful, but about 1/2 as much as yesterday.

his shoulders were also bothering him yesterday which i read was linked to this proceedure. today they are fine.

he has a very high tolerance for pain so when he was screaming in agony last night, i knew he was in a tremendous amount of pain. he was screaming at me saying "why did i listen to you and get this thing". even though the MO instisted but i also pushed him, telling him better safe than sorry.

today is a new day, he is doing better. he missed his IMRT yesterday and today but will restart tomorrow along with chemo.