Ashley's Story

She will leave fingerprints all over your heart


Still Trying

Ash's skin wounds around her stoma aren't healing quickly. Its amazing how fast it can change from normal, healthy looking skin to red, inflamed, oozing and bleeding. It literally can change over night.

She has been going without an appliance since Friday afternoon trying to give her skin the best chance at healing. She is lying on towels, diapered with a towel around the stoma, and Sensi Care Cream(a skin protectant) is covering the injured area. I'm doing everything I was ever trained, taught, or shown how to do. I've tried every single suggestion and at this point don't know what else to do.

We have an appointment with a wound/ostomy nurse, but can't be seen until Dec. 3. Usually these things heal or improve in just a matter of days. My hope is that our issues will be gone by the time the appointment rolls around. I can't imagine her dealing with this for that long. I really can't.

How did this happen? Well, she's 4 years old. When she gets itchy or irritated by the ostomy bag she pulls it off. Sometimes this happens during the night and I don't find it until time to fill her feeding bag or change her. The content in the bag is coming out of the small intestine. The job of the small intestine is different than that of the large. The small intestine's function is to use enzymes to break down the food we eat in order for the body to absorb the nutrients from that food. So those enzymes which work to break down the food can be very acidic and damaging to the surface of the skin. This results in skin breakdown. Since we are bypassing the large intestine(which happens to be where the majority of fluid is absorbed) the content(or stool) that is coming out through Ash's stoma(from the small intestine) is very liquidy. The liquid runs underneath the wafer the ostomy bag is attached to and sits there, damaging skin, until we see that it has happened and can clean it off of the skin. Its not uncommon. In fact it is one of the major issues most patients with an ileostomy face. Its very painful, burns really bad, and takes days to heal.

The hope is that we can keep the skin dry, protected from further breakdown, and clean. The problem is that without the ability to wear an appliance to catch the stool coming from the small intestine then it is still coming in contact with the damaged skin. I don't know how to keep it off of it. I'm using everything I know to absorb the stool, but the bowel empties a continuous stream of stool. Basically we are stuck between a rock and a hard place. Its miserable!

I've got lots of other, good, exciting new to share. Some great video footage which will bring tears of joy to your eyes, and photos of Ash in her new chair, but at this point I'm up to my elbows in poop. Literally! I'm hoping to get Dave to post the video sometime today. Or at least before we leave town.

Thanks for all your suggestions. I'm trying them all in hopes of helping her.


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