Incision site pain

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Kristina1

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Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
I had my tube placed 8 days ago. I'm still having significant pain at the incision site. It is so tender, sore, and burns. Is this normal?
 
Can you get it checked?
Sometimes it is just a little bit tight and can be adjusted.

Do you turn it every day? Is it unduly red? Do you get any leakage or bleeding?

By day 8 it should only be a bit tender, not sore and burning.
 
That doesn't sound right to me, I had no pain whatsoever.
Al
 
That doesn't sound right to me, I had no pain whatsoever.
Al

They put a knife thru your belly and you had no pain?!?

I believe mine hurt for over a week, but there was no burning.
 
Try soaking the drain sponge in saline for 10-15 minutes 3 times a day. I had an infection for a month on and off. I tried topical antibiotics, oral antibiotics, nothing seemed to work. Then a nurse suggested the saline soak 3 times a day, my stoma looked healthy within a week. I still use saline once a day just to keep things under control. I also use a drain sponge between my skin and the tube at all times, Plastic on bare skin just doesn't work
Vincent
 
Yep I always used saline too.

But it should be looked at - Kristina did you get it checked?

It's very difficult for us to say what is going on without seeing it up close, as it could be quite a few things that are easy to deal with.

Definitely a hole has been punched right through skin, muscle and stomach wall so there is something for your body to adjust to, but burning pain is not a normal reaction.
 
Sorry for my late reply. I called the GI on call yesterday and he said to come to the emergency room to get it looked at. I ended up staying overnight and the GI surgeon came in the morning to take a look. He loosened the bumper and got a barrier cream around the stoma because it was irritated by stomach acid (like a burn) and he corrected the way I was putting the dressing/sponge piece on. They did a CT to rule out problems with placement or other more serious issues. I have a follow up to see how it's doing next week.

Tillie, no one has said anything to me about turning it. What is that about and how do I do that?
 
Sorry for my late reply. I called the GI on call yesterday and he said to come to the emergency room to get it looked at. I ended up staying overnight and the GI surgeon came in the morning to take a look. He loosened the bumper and got a barrier cream around the stoma because it was irritated by stomach acid (like a burn) and he corrected the way I was putting the dressing/sponge piece on. They did a CT to rule out problems with placement or other more serious issues. I have a follow up to see how it's doing next week.

Tillie, no one has said anything to me about turning it. What is that about and how do I do that?
 
I'm so glad they have probably solved it, but if the raw stoma has had some stomach acid on it, it's likely to take a few days now to really fix.

I would suggest after every feed or flush, or at least 3 times a day give a gentle clean around the stoma, use saline if you like. Then apply just a little barrier cream - not enough to leave it feeling wet, but enough to give a bit of protection. The barrier cream should quickly give a lot of relief, but if it wears off a bit, time to clean and put a tiny bit more on.

Think of turning it a bit like turning the stud in an earring, it should be quite easy to give a little turn around.
 
I. Have thought about what GregK said and what I said was a fact, the surgeon did not but a knife through my belly, he made a quarter inch incision and inserted a small tube. I was out of the hospital in four hours and there was no pain. I would not lie about it or make a story up Greg. Those are the facts.
Al
 
I guess everyone is different. I spent two nights in the hospital post op in a lot of pain. I was on oxycodone the whole time and still having pain. I could not sit up, or lean myself back or turn my body or walk unassisted (despite ALS, normally I walk unassisted). I had to use the commode next to the bed and have 1 nurse hold me up while another pulled my underwear down for me, then they'd lower me onto it. I guess it was a good preview of what I can expect when my disease progresses.. my point is, Al, everyone is different. I'm glad for you that you had no pain. For me it was quite painful, and the entire recovery has been slower and hurt more than I was led to believe by the doctors in my pre-op consult.

I don't regret it, in fact I'm glad I dealt with it now while I am stronger than later down the road when it would have been even harder on me. So I'm glad I got it done and thankful to be able to use it, but I wish I had known that it can be painful and hard for some people.
 
Don't feel bad Kristina - my Chris had a really high pain tolerance level. Through all his ALS issues with spasticity and frozen joints he suffered a lot of pain refusing pain meds and rarely complaining of it (though I could tell he had pain of course). Chris needed endone to cope with the pain, so it must have been pretty high!

But he had 6 days straight of awful pain from the peg placement. Most people have significant pain for 24 hours. Many people have pain for a couple of days, and plenty of people have pain over the first week.

You are so right - we keep recommending PALS have this done early, while they are in reasonable shape and as mobile as possible and now you know why indeed.
 
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