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Wednesday, July 31, 2013

Ankle wound-4 weeks

I started my treatment on my ankle ulcer 4 weeks ago. The center is looking better but the out part is infected again:( waiting on the results from the culture he took yesterday.

The first picture is from 2 weeks ago the second is from last night.

Tuesday, July 16, 2013

Ankle wound- culture results

***warning this post contains a graphic wound picture.

I went back to the doctor yesterday for the results of the skin cultures. I am growing not one or two or even three but FOUR different bacteria on my wound:(

Staph, Pseudomonas, a rare bacteria called Serratia marcescens and a rare strain of strep called Beta hemolytic strep.

Luckily there is one oral antibiotics all four are sensitive too! And its the one I am already on. So that is good. But because it's four bacteria I am still at high risk for it spreading to my leg bone:( so I need to be on antibiotics long term- at least another 6 weeks possibly longer.

The ointment I have been using is working so I will to continue using that. I just need to soak and 'scrub' it more each day and stay off my feet as much as possible which is very very hard.

Here is a picture of how it looks now:




Friday, July 12, 2013

Ankle wound- Day 4

WARNING: this post contains graphic pictures of wounds!!

I have used the enzyme ointment- Santyl- for 4 days now ( along with oral antibiotics) and the ulcer is looking a lot better!

The top picture was before I started treatment and the bottom picture is from today.

Monday, July 8, 2013

Ankle Wound

I am going to post about something I don't know share so publicly, a wound I currently have!

I have had this wound on my left ankle for almost 2 months now and no matter what I have used, done or tried it will not heal:-(  I went to my own doctors about a month ago who just gave me an antibiotic and sent me on my way.  It didn't help at all. With the help of other EB parents and two friends who are wound care nurses by profession I tried to heal the wound by myself with products samples they sent or suggested.  But nothing I was doing was really making a difference.  My doctor "didn't want to deal with it anymore" (I will be finding a new primary care doctor) and a dermatologist I had seen in the past "doesn't do chronic wound care" :-(  So since the wound is on my foot I contacted a local podiatrist and he happily agreed to see me!

My appointment was today.

Diagnoses: Venous Ulcer.  Per WebMd this is a little bit about a venous ulcer:

What is a venous skin ulcer?
A skin ulcer is a type of wound that develops on the skin. A venous skin ulcer is a shallow wound that occurs when the leg veins don't return blood back toward the heart the way they should. This is called venous insufficiency.

Venous skin ulcers are slow to heal and often come back if you don't take steps to prevent them.
A venous skin ulcer is also called a stasis leg ulcer.

What causes venous skin ulcers?

Venous skin ulcers are caused by poor blood circulation from the legs, such as from venous insufficiency. Your veins have one-way valves that keep blood flowing toward the heart. In venous insufficiency, the valves are damaged, and blood backs up and pools in the vein. The blood may leak out of the vein and into the surrounding tissue. This can lead to a breakdown of the tissue and an ulcer. 

Veins that become blocked also may cause blood to pool, leading to these ulcers.

The Bad News: the wound is infected:(  its a minor cellulitis infection.  So now I am on Cipro until the skin cultures comes back and then I may need another or additional antibiotics.  

The Good News: the infection is NOT to the bone!!!!

The ulcer is also not THAT bad when it comes to ulcers.  I do not need surgery to have it cleaned out.  He prescribed an topical enzyme to clean the wound bed of the dead skin and allow it to start heal.  It is called Collagenase Santyl Ointment.  





It is VERY expensive ointment and unfortunately my insurance doesn't cover it:(  Thankfully the company that makes it has a cost share program so it only cost me $50 a tube vs the retail price of $223:-(  $50 is still a lot of money to us but its a lot better than $233!  Hopefully I will only need 1 or 2 tubes.


I have to use it for about 3-4 weeks until all the dead skin cells are removed.  its a VERY slow process.  After that then we will discuss a plan to help the wound heal.

My ulcer is NOT EB related.  While poor circulation is common in some forms of EB mine is from have vein problems since I was 18.  I started getting varicose veins in high school and compression stockings gave me hives so another alternative was to have my veins stripped.  It was something commonly done then. Little did I know the problems it would cause later on in life.  I have frequent swelling in my left leg than has never been explained.  Apparently its the cause of my ulcer.  

Since its not EB related he is treating me as if I did not have EB.  I have no idea if this ointment would work for others with EB wounds similar to ulcers but I will keep everyone updated on my progress!  


The wound is 1.8mm in diameter and about 1mm deep.  The dark red spot on the top left is an exposed vein.  It is VERY painful a lot of the time.  Most pain medication doesn't even touch the pain:(  I RARELY cry from pain...but this is unbearable at times.  It's even worse than giving birth!  The doctors gave me a mild pain med and if it is still very painful next week will add a pain to nerve pain as well.  

Working and taking care of the kids and house work is getting very difficult due to the pain and swelling. Its hard to walk a lot of the time.  I really hope it starts to heal soon.  I know one wound is nothing compared to many others with EB but this is the worst wound I can ever recall having and being on constant pain is really starting to take a toll.  I will keep you updated!  








For those that want to see it I will share a pic.








WARNING GRAPHIC PICTURE BELOW: