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itching & burning, but no leak?

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Posted 5/23/2014 5:27 PM (GMT 0)
hi there! So every now & then, I get a crazy itchy, burny sensation around my stoma- swear it's a leak. Then, when I take things off- no leaks, skin intact, everthing is good. Which I'm pleased about, but.... Do you think it's my skin getting de-sensitized to the adhesive or something? I'm about 6 weeks out from surgery. I do find the skin right around the stoma to be sore & burny in general, but it's not irritated. Could it be nerve endings repairing themselves? Anyone else experience this? I imagine it goes away in time. And like some others, I too, feel stuff coming out the stoma- sometimes it's a little burny, other times it's just like an oozing sensation... do these pass? I don't like to change any more than 4-5 days, because my WOCN nurse told me that alone will cause skin irritation, frequent changes. Just ignore it? How can I check for a leak without breaking the wafer seal?
Posted 5/23/2014 5:50 PM (GMT 0)
Eva, I have no answers for you, but I am 7 weeks out of surgery, and am having ALL the same experiences as you. I've been changing appliances a minimum of once every two days, mostly because I'm getting burning/stinging around the stoma and I'm afraid there's a leak. I've only seen actual leaking a handful of times. As for feeling stuff coming out of the stoma, I often do, though less than I felt a few weeks ago. But I swear I can feel it when I touch my stoma (by gently pressing in on the pouch), even though we've been told the stoma has no nerve endings and can't feel anything. Do you have an ileostomy or colostomy? I have an ileostomy.
Posted 5/23/2014 6:13 PM (GMT 0)
Hey bania, I have an ileo too! And there was another poster on here, Rabbit something-or-other, who posted about having similar issues. It's got to be nerves.... Does your skin get irritated from the changes? I've been going 5 days, & really like to change as less as possible. My stoma itself has no feeling- in fact, I scratched it yesterday with my fingernail while trying to spot a leak, poor thing bled for a few minutes! Of course I forgot to ask my surgeon any of these questions... I could email my WOCN nurse, but she won't get it 'til next week!
Posted 5/23/2014 6:36 PM (GMT 0)
Five days - you're lucky. Do you use 1 piece or 2 piece? Have you settled on a brand of appliance? I've been through just about every brand and model and found a problem with each one. I think I've settled on 1 piece Coloplast Sensura. I definitely need to use a barrier ring seal. The Eakin works well but is difficult to shape. I tried a Hollister Adapt ring this morning and it was easier to use, but I have to wait and see if it holds the seal well. The outer part of the Sensura starts peeling off, especially after showering, so I use Genairex crescent skin barrier strips. Those strips only last a day, but are pretty easy to peel off and replace, and they keep the Sensura on. This is all way higher maintenance than I expected.

My skin isn't really getting too irritated from the changes with the products I'm using now. I had issues with Convatec itching, and the Coloplast Mio definitely left my skin red every time I removed it. I am hairy, so I'm yanking hair out every time I change, which can be painful and leave my skin red. Ah, the fun of it all.
Posted 5/23/2014 7:43 PM (GMT 0)
     I'm four years post surgery and the skin right around my stoma has been red ever since my surgery.  It isn't sore though.  I noticed that the poo does manage to get underneath the wafer no matter what I try.  The only time it does get a little burny is when I eat spicey foods.  I use the one piece Coloplast Sensura bags.  Been using them since two months post op.  I started with the Hollister bags but had two of them break on me, so the heck with that.

     I changed my bag today and my stoma was bleeding...it does this on very rare occasions...but when it happens it is usually just a drop or two..this time, it was bleeding pretty good.  I think it was because I had a partial blockage.  I ate a salad last night and a pretty hefty piece of lettuce slid down my throat with the tomato...and...I thought..uh oh.  It is much better now because I have been drinking hot tea and alternating with cranberry juice..hurt like the dickens earlier.   Just be careful about your chewing girls tongue !

Posted 5/23/2014 8:01 PM (GMT 0)
Bania,

I get about 5 days out of my Coloplast Sensura 2-piece but that was only after I added the Coloplast Brava Strips to my setup, otherwise the Sensura lasted about 2 days for me. My complaint about the Brava Strips are that they hold too well and can be a little difficult to get off but I've never have a leak or blowout after I started using them 4 months ago.

Eva, I know the occasional itching that you are talking about and it went away for me after a few months
Posted 5/23/2014 8:05 PM (GMT 0)
I believe it's because of the nerves healing post-surgery, I had the same experience with both of my stomas.
Posted 5/23/2014 9:08 PM (GMT 0)
I'm glad to hear I'm not going crazy! Because it's sporadic- it'll itch & burn for an hour, then feel fine. I'm using a 2 piece click-lock system right now. I've been alternating between Hollister New Image & Convatec Sensura- I like Hollister better, find them to be more comfortable. The Convatec really makes my skin burn after 3 days or so, plus the wafer just feels huge on me. I think the floating flange on the Hollisters makes a big difference. Well, I'm going to change either tomorrow or Sunday, so we'll see if anything seeped under there! Hope not...
Posted 5/23/2014 10:20 PM (GMT 0)
Eva - I am having the EXACT same issue and it's driving me crazy (I'm 4.5 weeks post op). I went back to the stoma nurse twice and she kept giving me different appliances with larger "bumps" (latest is a convatec one with a LARGE bump)...much bulkier than others...but I'm wondering if I was actually ok with the other ones (tried a great coloplast one prior...not sure the name though, so much more comfortable and I really liked how it secured at the bottom). When she took the coloplast one off she said it wasn't too bad, but I was having a lot of stinging/burning, and I'm thinking that it wasn't from a leak now. I also really liked the eakin seal, but with this large bump one, she said to use paste because it will fill in areas where my stoma is not perfectly round. The alcohol from the paste burns...but what can ya do...It's nice to know that others are experiencing this as well because when I mentioned it to my stoma nurse she said that I shouldn't be having any burning/stinging and that there was nothing she could do about it...
Posted 5/24/2014 12:29 AM (GMT 0)
Hey there, I've had my stoma for several years now and I just wanted to share a suggestion that sometimes works for me. I still get that itching and burning sensation once in a while when I am not having a leak. Never thought about it if it could be tied to something I ate as someone suggested. Anyway, it sometimes helps me to put some really cold water in a squeeze bottle and put it in my pouch and swish it around and then empty. Try doing that one or two times and often it takes away the itchiness for me. It's worth a try? Good luck, and I feel for you. It makes me crazy when I start to get itchy.
Posted 5/24/2014 12:58 AM (GMT 0)
KS - Yeah, the Brava strips hold on well but you're right, they are very difficult to get off, and end up leaving my skin red. That's why I switched to the cheapo brand. They only last a day before starting to peel, but they're a lot easier to take off.

Jets - Stoma nurses can be great, but it's not the same as talking to someone who actually has one of these things. This board and the people on it have been so helpful to me.
Posted 5/24/2014 4:11 AM (GMT 0)
I got the burning and itching at first. Turned out it was a skin barrier I was using. The 3m cavilon wipes. I stopped using it and I haven't had a problem with itching since. 2+ years. I haven't used any skin barrier since. Some have good luck with the barriers. You didn't mention if you are using one but I thought I'd throw that out there.
Posted 5/24/2014 11:38 AM (GMT 0)
I do use Cavillon 3M skin barrier spray.... but I don't think that's the culprit, just because the sensations are so erratic. Yesterday it was driving me crazy for the better part of the day- today, everything is calm & comfy. Funny how so many of us have experienced this, yet the WOCN's are saying "Oh, you shouldn't feel anything!". Ah well, whatever it is- it'll pass!
Posted 5/24/2014 1:21 PM (GMT 0)
For the first few months post op, I also had the same itching/burning sensation, and never a leak. My surgeon explained that it was the nerves being stimulated/regenerated. It does dissipate over time, and at 7 months post op, those sensations have pretty much gone away.

Yes, some people do say that we should feel nothing, but I have times when I feel my stoma pushing out my poo, and when cleaning my stoma during a bag change, I swear I can feel myself touching my stoma! So, I think the important thing for so many life situations is "never say never"!

I also have phantom rectal pains since being closed up. They have lessened in frequency and severity over time, but even without an anus, I can feel things down there when the phantom pains come on - don't be alarmed if this ever happens to you. All of these sensations are a normal part of the healing process :)
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