This post is all about HS, so if you are squeamish, have no interest in blood and pus and other disgusting aspects of this disease, please feel free to move on!
I am sick of not getting anywhere with this. Whenever I have a few days like this I find the best way is to try to find something that gives me some hope that I can live a little more comfortably with this condition. So, I decided to email some dressing companies based on a wound care sheet I found. Convatec were very polite, but said they could not send me any dressings direct as samples are only sent to dermatologists/organisations etc. The nice lady from Convatec was very sweet and sent me a link to the Hidradenitis Suppurativa Trust website and urged me to go and see a dermatologist here. I’d very much like to, but my last experience of seeing a dermatologist in Bordeaux didn’t go so well.
We went to a hospital in Bordeaux. After waiting for nearly 2 hours, we finally met the derm. He brought in a whole load of students to examine my backside, spoke only in French, addressing Mr B most of the time. He spoke English to me at the very end, so obviously he could have explained the tricky bits in English, but chose not to. When I tried in earnest (in French) to explain how I had changed my diet and tried to change my whole lifestyle to combat this disease from inside, he hardly acknowledged it. Instead he wote me a prescription for a 10 week course of antibiotics and said, “If you were dying you would take it, but it’s up to you.” Oh, the arrogance!
Anyway, I am back to finding my own path for the time being. 3M called me back and said they would get their resident doctor to call me about types of dressings, but I never heard back. I decided to ask my homeopath for a prescription of Duoderm Extra Thin, but as usual when I think everything is going well the language barrier prevails and I got a prescription for Duoderm E Border (I believe it is Granuflex in the UK) instead.
I tried it the next day, carefully cutting it out and placing it directly on the sensitive spots that were leaking. It was weird, awkward and a bit cumbersome. The patches were quite thick and they were sticky, which meant my butt cheeks kept sticking together during the day! By the end of the day, I had had enough and tried to take them off. Well, it says just hold the skin and gently peel back…right…that’s not quite how it happened with me! I tried pulling and it was so stuck to my skin, I was in agony. Ed came to help me and at this point one side opened and pus dripped all over the floor. I started laughing at the absurdity of the position I was in, not really knowing what to do next. I stood in the shower and we carried on laughing as I peeled the layer of hydrocolloid off my broken skin, with intermittent yelps of pain between the laughs.
It hadn’t worked out as well as I’d hoped. it had been semi-waterproof, but had definitely cut the strips too big. I realised too, that my skin was so sensitive, I would need to put the Mepilex on under it, to prevent it sticking to my skin. It was a little disappointing, but for a first go at finding a longer term solution, it wasn’t all that bad. It’s hard to know what you are supposed to be doing with all of this new technology, even if it is just a glorified plaster.
One down, many more dressings to go! Allez!