So, some of you know I have been fighting blisters and painful conditions under my skin barrier. I was able to get into a local dermatologist after the VA doctor would not see me. He took a biopsy of my skin, gave me antibiotics, and some medication to try. The biopsy came back today, and it has been identified as a very rare autoimmune disorder which causes the body to attack the second layer of skin and produces blisters which fill with fluid, break, and leave an open sore. There is no cure. I have to have another biopsy to identify the exact disorder, but I suspect it is Bullous Pemphigoid, which is a skin disorder that affects older people 60 and above. The other variations of the disorder only affect children and babies. I am pretty upset with the VA doctor. I have been asking for help with this since June, and they did nothing. Had she looked at it and made a referral for me to the dermatologist, I could have started treatment sooner. This disorder is related to the other skin problem that I have developed called Prurigo Nodularis, which also has no cure. I wrote the VA doctor a letter and told her that because the VA paid fully for both my emergency ileostomy surgeries, they are responsible for taking on the responsibility of having Community Care treat and pay for anything that is interfering with the stoma, skin around it, or issues that interfere with the proper wearing of the appliance required to control the effects of an ileostomy. I told her I wanted a referral ASAP to the dermatologist and that I felt the VA Clinic did not have the experience to diagnose nor treat this disorder. I do not know how I am going to deal with this. It feels so unfair to have to have two emergency ileostomy surgeries and then to get this incurable autoimmune disorder on top of it. It makes wearing a skin barrier pretty miserable when the skin is so raw and blistered. The medication I have been given does not dry well and causes the barrier not to stick to the skin. I have had to find ways to seal it so I don't get leakage. I will give another update after the next biopsy comes back. I will be surprised if it comes back something other than what I have researched. All the photos of the disorder that I saw look strikingly similar to what is on the skin surrounding my stoma. On top of this, I have noticed that the same type of blister is forming on my recent knee replacement incision. That concerns me as I don't want my body to reject my new knee! So here is my dilemma, the dealt cards I have to play. I am becoming weary and discouraged with all of it!

Top 5 Collections
Advertisement
We brought kids and ostomates together to learn about stomas for the first time. While what kids ask can sometimes be surprising, their sincerity can brighten your day!
- Real People
- Support & Understanding
- Private Conversations
- Relationships
- Tips from Peers
- Photo Sharing