Struggling with Rare Autoimmune Disorder: Frustrating Update

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!

I am so sorry for you. Alas, we have come to the time when we have to become our own health advocates. We must do all of the research ourselves, in a lot of cases, and also attempt to diagnose our own conditions. Many docs aren't familiar with ostomies in general, I have actually had nurses tell me, "I've never seen one of those before" (meaning the bag and the stoma), so I usually proudly show them. When we have to teach our health care providers about ostomies it can be rather shocking. Kudos to you for demanding your referrals, also, have you been to see an ostomy nurse? They are usually very helpful with stoma issues too. Keep your chin up, you will get through this! You are strong, even if you don't think so right now. You have my full support, please feel free to vent at any time--we are all here for you.

Sounds horrible to go through, hope it gets better for you.

I hope this works out for you soon and you get everything you need.

Axl

I am so sorry... I am saying a prayer for you right now.

Unfortunately, the government in America hates Americans, especially veterans, right now. Sorry you're going through this. They'll be happy to break you down and tear you apart and make surgeries for gender surgery. But if it's real stuff and health issues, they won't do anything.

I have launched a metaphoric missile of compassion towards you.
It would be great if you could irrigate, for a while at least... if appropriate... Good luck

Hugs

Hope things get better soon. Life can be so challenging sometimes. Hang in there. Having faith has pulled me through many terrible changes with my disease. It is tough to have faith when your body keeps breaking down. Stay strong and vent to us. We are all warriors fighting for our lives and health.

What you're going through is like pouring salt on a wound and is so unfair. It takes a lot of energy to get through each day with such issues let alone having to advocate for yourself through medical mistakes. How could it not be emotionally and physically exhausting? Try not to go to the worst-case scenario in your head regarding your knee. I know it's on your mind but don't let it consume you. It's easy for me to say, I don't have what you have, but I have other miserable things and I do tend to go to those dark places. You sound very strong in your ability to fight for yourself.

Hi Free,

Wow, sorry to hear this. There's been a lot of work in the area of biologics for autoimmune diseases of late, which both Bullous Pemphigoid and Purigo Nodgularus are believed to be. They'll probably start you off with the topical steroids and all the fun that comes with that, but the biologics may be the longer term solution. You might want to consider contacting Cleveland Clinic and/or Mayo for their opinions on the subject. Tele-appointments make that all simple and easy nowadays. Hopefully they'll get you straight sooner rather than later.

From the ostomy hardware point of view........what I've read as being recommended is switching to non-adhesive ostomy barriers, while the condition is being managed. Nu-Hope Labs makes a very good non-adhesive barrier system which uses a foam that seals to the irregular skin, held in place by their belt system, which prevents leaks while not interfering with the skin's healing. They're great folks to work with, they send samples fast and their ostomy nurses seem to know their stuff (no pun intended). They helped me navigate through my weird skin issues of late, and I can't say enough good things about those folks. Can't hurt to at least see what they have to offer.

Like everyone else, I'm wishing you the best in dealing with what you're going through. Life sure isn't fair in how it deals out crap for us to deal with.......and you're seemingly getting way more than your fair share. Let us know how you make out, as we'll all be pulling for you!!

;O)

Bob