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What did I miss? I went to my pharmacy to order a couple more tubes of ilex and was told that they can't get it anymore. Checked online and if you can find any it is at least twice as expensive as the last time I bought it a few months ago. Anyone know what's going on? And what can I replace it with????

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IMO it is over rated and you did the right thing in not ordering it Catinthehat. It's helped many on here but it has not helped me. I'm having a difficult time with the skin around my stoma. It isn't as bad as butt burn was but worse than I thought it would be.  I'm hoping the skin will get use to this acidic poop, soon. Please post if you find anything that works

TE Marie:  I have been using ilex for years for frequent bad butt burn but was paying about $6.50 per tube thru my pharmacy. (Last time I bought it for that price was late Spring.)  It helped give immediate relief but I didn't like the way that it turned into gummy balls after being on for a day. I am now trying Calmoseptine which is ok but the menthol in it has a cooling effect but also makes it feel like the area is always wet which bothers me.

Someone in another post said they loved Balenol lotion (available at CVS) but I've not tried it. It is also pretty expensive.

Richard

Hi Richard,

Thanks for the suggestion. I used Balenol way back in pre j-pouch days and might give it a try. I've put calmoseptine on my ileostomy skin before and washed it all off before putting my bag on as I thought it would keep it from staying on. I've put liquid antacid on as well. A former stoma nurse suggested it after the stoma powder was wiped off.  You don't need to wash it off before putting a new wafer on.  it's just not as strong as I wish it were. Didn't do as well as the barrier spray I use. 

I keep hoping that the skin will toughen up like it did after months of butt burn. Same acid crap, different location.......

Paulette

When I discovered ilex paste, I had a loop illeostomy and I'd  tried every paste, cream, powder and concoction available to treat the red raw, broken, oozing and excruciating painful skin around my Stoma and nothing worked.

At the time, ilex wasn't availbke on UK NHS prescription, so I had buy it, which cost in the region of £18 ($27) inc delivery per tube.

I was in so much pain, discomfort and desperate, I would of probably still bought it regardless of cost.

It was by far the best product I've ever used and once applied, it provided instant relief and totally healed my broken skin within 3 - 4 days of applying it.

I continued to use ilex around my Stoma as a preventive measure for a further six months; I bought maybe 3 tubes during that time and it was worth every penny or maybe I should say every cent.

Just after takedown, ilex was still not available on NHS prescription in the UK and my Pouch Nurse provided every product available to treat the butt burn but once she discovered I had ilex paste, she said forget the rest, just use the ilex.

At the time I only experienced an excruciating burning and itching sensation for a few days just after takedown and again, the ilex paste provided near instant relief.

For a few months after takedown I continued to apply ilex after every BM as a preventative measure but once my BM were down to 4 or 5 per day, I only applied it when I could feel an itching sensation, I still do so now.

I discovered that if the skin is not broken, wet and oozing, then only a small pea size amount can be spread thinly around the affected area.

Once applied and after the next BM, cleanse with wet wipes and reapply the ilex.

Using small pea size amounts prevents the ilex paste becoming a sticky and gloopy mess.

If the skin is broken wet and oozing, I find it best to apply ilex paste by heavily smearing it over the affected area; by doing so, it will become sticky and messy, but only for 3 or 4 days and until the ilex has worked its magic.

ilex paste is now available on NHS prescription.

Last edited by Former Member

Irritated (or worse) skin around the stoma.....here is what worked for me years and years ago:  After removing the wafer and appliance I stood in the shower and let warm water wash over my stoma and the surrounding skin.  I washed the area gently with my fingertips and Ivory soap.  When out of the shower I dried the area with a hair dryer set on cool.  ****Then.....I applied the thick, white liquid from a bottle of Mylanta (generic is fine) after soaking a cotton ball with the solution.  I dried the area with a hair dryer set on cool/warm.  I brushed off excess Mylanta from the skin around my stoma and repeated the procedure two more times.  Then, I brushed a solution which is made to assist sticking of the wafer to the belly.  (Can't remember name of product but an ET nurse would know.)  I placed the wafer on my belly, around the stoma and kept my hands on it in order to help the seal take effect.  Then, I added my bag and fastened an ostomy belt to the entire setup to give it extra support.  This procedure yielded in my bag, etc. lasting at least 7 days.  I changed it all every 7 days whether it needed it or not.  ****The night before changing everything turn a bottle of antacid (like Mylanta) upside down and let the thin liquid rise to the top of the bottle.  In the a.m., before beginning the change, as described above, carefully pour out the thin liquid from the bottle of antacid and stop when the liquid begins to thicken.  You are only going to use the thick white stuff!  Good luck!

At my appointment with my Stoma NP yesterday I was happily surprised how much my skin improved when I took it off for her to examine. The night before, when the output slowed down, I removed the appliance.  I slathered Calmoseptine on my skin and replied it as needed for a few hours.  I washed it off with the same brand of liquid they had me use in the hospital. I blotted on  liquid antacid, dried with the hair dryer like C.E.M. describes above. 

I am going to turning the bottle upside down and use the thick part as she suggests.  I have been shaking it up.  Little changes can dramatically change outcomes. I put on one of the sample product appliances to wear for 9 hours until her appointment.  I even showered with it on. Usually when I change it several times a day it gets worse.  Mine seems to respond to open air.  I just don't get any sleep when I sit up nights airing it out.   

I am so depressed about all of this.  My permanent stoma healed pointing down and I have to live with it like this. She says if I lost more weight that It would improve. I am 50 lbs less than when I had the temp stoma 5 years ago.  Of course I want to loose more weight. I hate hate hate it when a medical professional tells me that I need to loose more weight.  I am still overweight but no longer obese.

In the near future I will try Ilex again, as Strange described above.  For now I'm going to stick with the liquid antacid so I can tell if it is really working.  My skin is super sensitive. For example there are many brands of make-up that I never could use.

Calmoseptine was the best I found for butt burn.  After time I hardly ever needed to use anything. I asked the Stoma nurse if the skin around my stoma will eventually get use to my acidic crap.  She said no  Did your skin eventually get use to all of this? I am tired of every thing.  

Thank  you all for your detailed suggestions. They do help. A month ago things were worse so things are improving.....until the next big mess appears under the wafer. 

  

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