It was very deep and not a typical EB wound. It turned out to be a venous ulcer. I had a lot of biofilm and bacteria on it that no only prevented it from healing, it was causing it to get bigger. By Thanksgiving I had three ulcers that were rapidly becoming one.
Despite being on oral antibiotics for months, doing bleach and vinegar soaks the infection continued to worsen. I tried every wound care product out there; it would not heal. I discovered in the process I am allergic to silver, Medihoney, Hibiclens and a new product called Endoform:( the Endoform was pretty much my last hope.
By Christmas the wound was 6cm x 4+cm:-( very infected and very, very painful:(
So I stopped the antibiotics, soaks, specialty ointments and dressings.
I made up a homemade ointment from a recipe I got from another EB parent
one 14 oz tub of Aquaphor
60cc's of melted coconut oil,
7 grams a powder called lactoferrin
7 grams of FINELY ground Xylitol,
30cc's of tea tree oil.
30 DROPS of lavender oil
I mix all together in a empty container. The Aquaphor is the base, the Lactoferrin and Xylitol are essentially for removing biofilm. And the oils reduce inflammation and help treat infections.
I also make a mixture of 30cc coconut oil, 10cc tea tree oil and 5 DROPS lavender oil.
I wash the wound with plain soap and water. Apply the oil mixture to the skin around the wound. I then apply anti fungal ointment to the edges of the wound. I then apply the home made ointment to mepilex transfer, cover with mepilex lite or restore lite foam and then secure with tubifast. I tried the thicker dressing, the drainage still soaked thru and they didn't allow the wound to breathe and caused more itching.
This kind of ulcer drains A LOT and the drainage is toxic and painful. I have to change the dressing as soon as I see drainage on the outside of the dressing. Which for me is 5-6 times a day at least. I know that is not practical for most with EB but it is working for me.
I have also changed my diet. I now drink a protein shake daily. I also reduced my sugar intake and eliminated caffeine and alcohol. Those three things were causing significant inflammation to my wound.
So between the changes in wound care and diet, my wound went from 6cm x 4cm to 4cm x 2.5cm within a month!!! I still have a long ways to go before it is totally healed but this is a huge difference.
I will post pictures at the bottom for anyone interested but warning they are graphic!
I am not looking for any advice this time:-) I am posting this in the hope it might help others and to update those who have been wondering how my wound is doing.
PICTURES for those interested!! WARNING they are GRAPHIC!!
original wound (May 2013)
July 2013
August 2013
Thanksgiving 2013
Early December 2013
Christmas 2013
January 2014
February 2014
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