granulation around PEG (again)

[rose]

Here's the next chapter in my PEG adventures. Right when I thought I had it nailed, almost no seeping, no redness, definitely no infection (never want to see black spots on my skin again!) the granulation tissue reappeared practically overnight. Within a couple of days there was this 'thing' growing up out of the stoma. If I even touched it, it bled, and the yellow drainage gunk was non-stop.

The miracle mist spray wasn't helping, I switched back to tea tree oil, did not help either. Last Friday I had an appointment with my dermatologist for an unrelated reason, and she treated the area with the cauterization machine, but, was very cautious about getting too close to the tube - for fear of melting it - so, what she did did not seem to help much either.

Over the weekend I cruised around the internet, found silver nitrate sticks on Amazon, started to order them, but changed my mind. What bothered me about the silver nitrate that is it will only reach what granulation is on top, and I think this stuff it has to be down into the stoma as well.

I went back to the Oley support forum, read through posts, and noticed a cream that kept popping up. The cream is by prescription only. Monday morning I called my gastro doc to ask about it. He was concerned that it might be infected again. I didn't want to have to drive well over an hour to see him, so it was good that my dermatologist had taken a look at it just a few days previous. I think if I hadn't just been seen by her, he would have had me come in.

I was surprised that he didn't know what cream I was talking about, because I thought granulation was a common problem. He said that it happens with PEGs, but he would not say that it was a common problem for his patients. (lucky me) He said to look up the name of the cream and he would call it in.

After only using it last night, and then twice today, there is a vast improvement. HUGE. The cream is an anti inflammatory, but it is not hydrocortisone. The generic name is triamcinolone acetonide at a strength of .1%. The brand name is kenalog.

Another thing I did was cut the tube to make it shorter. It weighs less, and doesn't have as much swing to it now if its not tucked in to part of my clothing. I think the movement is a contributing factor to the granulation. It is much more comfortable at around 7 inches, I think I cut about 8" off. It was really long.

Next month I'm supposed to get a replacement tube, that is the button style. - very happy about that

 

[brooksea]

Thanks for the info. I think movement against the tube really contributes to the granulation.

Good luck with the button.

 

[joni51]

Bruce's tube is kinda long too, sometimes he tucks it in his pj bottoms, and I think that pulls on it and maybe keeps it running.

 

[rose]

Yes, I agree about the issue with movement. I wish our healthcare providers were more emphatic about that aspect. I read on the Olney forum, that sometimes all it takes is a change of PEG style to fix the problem - as in the tube being too long as the cause.

Joni, when it was longer it was easier for me to use, but, it got pulled easier too. I'd gotten in the habit when I was in the shower, of tucking the end portion under one of my boobs to keep it from swinging around. (might be TMI, but if Barry can talk about his, I guess I can mention mine lol). I am surprised at how much lighter it feels shorter, not as much pull on it when not secured.... Has Bruce had the second cauterization yet? I will update how using this cream goes. It was cheap too - always a plus 8)

 

[tomby]

I'm sorry, to keep what from swinging around? :razz:

 

[tomby]

I got my tube switched out for a button in May. Night and day, what a relief. I still get some gunk seeping around it, but minimal, and can just squirt it off in the shower.
Tom

 

[rose]

Tom, LOL. It's encouraging to hear that you like the button.

 

[tammyg]

My dad's was soooo long he like safty pinned it to like his shoulder. I did learn that when it got cloudy or yulky looking put some Coke a Cola in it. Cleans it right up.
Button, Button whose got the button. LOL

I still like ya even know I see "Go Steelers" Got alot of Purple Passion here

 

[rose]

Tammy, the advantage to the looooong tube is just that, having the end reach up so high. When I was at home, oftentimes I would have the end of it draped out of the neck of my tank top (or whatever I was wearing. ) made it easy to get a hold of. One time I needed to sign for a delivery, and I noticed the mailman looking at me funny. Later, I realized it was because I had the darned tube out the neck of my top

Yes, Steelers/Ravens rivalry is a strong one. Good thing its just a game I think it goes back to the late 90's when the original Cleveland Browns relocated to Baltimore, and thus became the Ravens. The Pittsburgh vs Cleveland rivalry was long standing. I'm not originally from Pittsburgh, but lived there for several years. Once a Steelers fan, always, I guess.

 

[Sequoia]

Sorry you are going through all this Rose! But I am learning alot from your posts for future reference. Thanks!

 

[tmasters]

Ditto that. I'm learning a lot from your posts, too. And you never complained about post-surgery discomfort or even announced that your surgery was upcoming. Thanks for being part of this forum!

-Tom

 

[LizT]

my pals has had issues with this off and on for many years. im not sure that its really that urgent... what i mean is, it hasnt effected him in any way and its been years. guess its different for everyone. hope you get it figured out.

 

[KellyGirl]

Why didn't I think of that, cutting it, it's so bulky and like you said easier to get pulled on something. My 3 year old granddaughter grabs at my belly all the time, one of these times she going to get it.....PS: I use the boob trick too....lol

 

[rose]

I am just laughing here as I type, knowing that I'm not alone in using the 'boob trick,' maybe this can become part of our forum's terminology, along with 'bulbarian' etc. Although, I guess not many guys will be able to use it lol

Tom, my goal is still to get mine as good looking as you've said yours is

Liz,

I don't think granulation tissue is considered a health risk. But, it is a comfort issue, especially for those of us who are mobile, and the slightest movement causes discomfort.

In my own case, the doctor was concerned because of the possibility that it was infection returning. I was one of the unlucky few who did get a doozie of an infection post-op. I was on oral antibiotics for about 5 weeks.

As an update, the cream has continued to make a big improvement. What was originally the largest clump of granulation tissue has disappeared, there is a small place at the very top where if it is touched it still bleeds, but the pain has largely gone away. Before I started treating it with this, there were a couple of weeks to where I could not stand even having my coat or jacket zipped up when I went outside because the slightest pressure on the tube caused such a searing burning pain. Inside the house I had my tops pulled above the tube. It was miserable. All of that pain is now completely history (yay)

About the length of the tube, I continue to think that was a big contributing factor in the issues I was having. I don't have a grandbaby to pull on it (although I WISH I did!) But, good old Ernie dog is a considerable risk when he gets all riled up playing like a maniac. The extra length just made for more opportunities for it to get unexpectedly jerked. I was paranoid when in bed that it could get rolled over on, etc.

My latest, greatest shower maneuver, is to slide the clamp up close to my body, and take the 'Y' adapter off of the end. It makes it lightweight, and the tube sticks straight out kind of like.....:?: (but Don tells me I have no 'girth' )

 

[LizT]

Sorry Rose- I hadnt thought about the mobility aspect of it. As you know, my PALS is completely immobile.
Glad to hear the cream is working for you.
Lots of love.