Struggling with Bullous Pemphigoid and Autoimmune Disorders

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freedancer

Hi all! I'm just popping on for a bit. I think that I told you that I now have two verified autoimmune disorders, Prurigo Nodularis and now confirmed Bullous Pemphigoid. The second one, which I refer to as BP, is wreaking havoc with my ileostomy! The dermatologist put me on a liquid Clobetasol. It has a high alcohol content and it really stings when I put it on the raw sores under my skin barrier. If I do not use it, my BP gets out of control and many blisters form under my barrier. When I use it, I have to cover the raw skin and then I have difficulty getting a good seal on the barrier. BP causes other issues as well. It affects my joints and contributes to the pain I experience when the inflammation in my joints gets out of control. The BP sores and blisters have attacked my knee replacement incision and are causing it to become infected and has also caused some cellulitis in my knee. Luckily, I was given some heavy hitter meds to knock it out quickly. I can say I am frustrated, angry, and very depressed with all of this. The most troubling issue of BP is that I was given a sheet from the dermatologist explaining that aspirin, NSAIDs such as ibuprofen, Aleve, Advil, Motrin, etc., can no longer be used. Since I am allergic to 99 percent of all narcotic pain medication, this new medication issue really throws a wrench into the punch bowl because I am now limited to only Tylenol products. There are also many antibiotics I am no longer able to take because it flares up the BP. I also had my Lisinopril heart medication removed and they haven't found a replacement for me yet. Also, I no longer can take vaccinations such as flu, pneumonia, and shingles, and the Covid vaccine is no longer in my wheelhouse (I'm okay with not taking the Covid shot). I am worn out with all of this. Every time I turn around, I get attacked with another disorder!! I would really like to have a few years of no health issues for once in my life. Anyway, thank you for letting me vent my frustration for a spell. I hope the majority of you are all doing well. Take care!

crappycolondiaries

Well goodness, that's a lot going on all at once. No wonder you are feeling so frustrated!

Is your dermatologist able to coordinate care with any of the medical team that works with your ostomy?

I feel you on wanting a break from health issues... I'd like a solid decade with no surgeries, invasive procedures, nothing new, and the current issues are welcome to go away as well. :)

What is your local support system like? Sounds like you have a lot on your plate health-wise right now.

I hope today (it's almost 3am where I'm at so I feel like I have to say today instead of tomorrow) will be better than yesterday and that something unexpected and good is waiting to surprise you.

Here's to venting and getting all those negative feelings out :)

-Jodie

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Axl

Let it all out free .... I hope you get on top of it all shortly

Ostomate & woundr

I recommend you research either an outpatient wound clinic or a good plastic surgeon. There is a skin replacement available that really helps control the pain and can replace the skin that you have lost in that area. In my humble opinion, they may be able to help you more than the dermatologist.

For those of you with other types of holes near your ostomy, one product that I have been fairly impressed with was being distributed by Medline. Last I checked, it's called Pleurogel. Unlike other types of wound gels which become more liquid upon reaching body heat, Pleurogel does the opposite. It needs to be kept refrigerated where it will stay liquid. Once it is applied in a wound, it becomes almost solid, capped with an appropriate dressing. You can usually pouch over it and it can stay on for up to a week without changing. Now, I know that most of us don't really get a week's wear out, but I don't want you to feel that you need to change the dressing sooner just because of the wound treatment. It does require a prescription. Feel free to message me and I will research where and how it can be obtained these days.

William15

Hi Freedancer.

Sorry to hear you are experiencing some ongoing health and medical issues, and I hope that being able to reach out and express your struggles to our community offers you some reassurance - please keep hitting us!

It's just a suggestion, but have you thought about researching whether or not honey could be of any help to you? I occasionally see postings on the site from members who experience skin problems, and having some awareness about honey being used for skin/wound problems, prompted and directed me to the Google tool, and there is a plethora of information on the subject about it out there.

Best wishes.

Will

 
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jeanneskindle
Reply to Ostomate & woundr

Wonderful advice. Thank you so much.

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