Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi all- sure is nice to be among folks that understand the misery.
I'm 58, a Husband (37 years) and have 2 grown sons with 4 Grandkids (4-12).
After years of "suck it up and drive on" that didn't work- things degenerated to the point that I was spending an hour a day in the bathtub (Morning and Evening) lancing and draining boils and decided it was time to do someting different.
So after months of pushing back and insisting that there MUST be something- we finally found a surgeon that understood. She arranged for a surgery (over the objections of the insurance) and basically removed the skin from the top 6 inches of my inner thigh- a patch about 10 inches long. Then replaced that with an Integra artificial skin graft. (Given the size of my butt it was looking for a while like they were going to have to use Nauga) She also removed 4 other bad actors and left them to heal by secondary intention. This was in December of 09 and the graft is just now almost closed. I think that the process would have been shortened if they had applied a epidermal graft over the Integra but I wanted to remove as much of my old skin as possible.
There were a few remaining chronic lesions that I had removed last week - one on each butt cheek, one on my thigh and the Grandaddy of them all on my (don't know what you call it) that was producing about a teaspoon of poison per day.
Somehow in the process of arranging for this most recent surgery I forgot the part about the week flat on my back in the hospital with the BIGGO jug of morphine. That and the previous excisions were just left open but the new sites are in locations that are too exposed to contamination to leave open. You heard it here first- staples SUCK even worse than Tape and Bandages.
So that is the trail of tears- the good news is that for the first time that in memory- no one is leaking pus (OK except for those 2 in my armpit). Don't know if that will persist but I'm all done doing nothing. I'm determined to have them cut off as fast as they reappear. I do know that the next poor SOB that asks if I have any identifying scars or tattoos is in for a rough day.
Some questions/observations.
During the first surgery within hours of leaving the OR the nurses discovered that the bandages were FULL of pseudomonas. This was the first that I had heard the term but after smelling the bandages noticed that is the exact same smell that the boils have. Pseudomonas is a prime culprit in interferring with healing as I understand it and I'm wondering if there isn't a symbiotic relationship that allows the psuedomonas to defer healing of the lesions in exchange for nutrients they need from the pus.? http://emedicine.medscape.com/article/226748-overview.
After discovering the problem a daily swabbing with Dakins solution (2% Chlorine) clears it right up. I think that is at least partially responsible for the turn around- could be wrong though.. Any others notice this?
All the literature suggests that this is an infection of either sweat glands or hair follices. The curious thing is that in at least a third of the new lesions- there is NO sign of a surface insult. The boil forms, gets huge and then settles without breaking the skin. I wonder if it isn't a subcutaneous problem that MIGHT find that the path of least resistance is through a follice or sweat gland? In other words its not a skin problem at all but a result of some kind of injury to the connective tissues/blood vessels under the skin? The reason this came to light is that the last 2 that I had to have lanced were FULL of anerobic bacteria. Seems that would suggest that the problem came from within.
After reading some here about the zinc gluconate- I'm for sure going to try that. I am also going to try the medicinal honey treatments as well. Prolly have to keep an eye out for ants 8-}
Pretty windy for a first post and I apologize for that- just nice to be able to vent!!!
I'm 58, a Husband (37 years) and have 2 grown sons with 4 Grandkids (4-12).
After years of "suck it up and drive on" that didn't work- things degenerated to the point that I was spending an hour a day in the bathtub (Morning and Evening) lancing and draining boils and decided it was time to do someting different.
So after months of pushing back and insisting that there MUST be something- we finally found a surgeon that understood. She arranged for a surgery (over the objections of the insurance) and basically removed the skin from the top 6 inches of my inner thigh- a patch about 10 inches long. Then replaced that with an Integra artificial skin graft. (Given the size of my butt it was looking for a while like they were going to have to use Nauga) She also removed 4 other bad actors and left them to heal by secondary intention. This was in December of 09 and the graft is just now almost closed. I think that the process would have been shortened if they had applied a epidermal graft over the Integra but I wanted to remove as much of my old skin as possible.
There were a few remaining chronic lesions that I had removed last week - one on each butt cheek, one on my thigh and the Grandaddy of them all on my (don't know what you call it) that was producing about a teaspoon of poison per day.
Somehow in the process of arranging for this most recent surgery I forgot the part about the week flat on my back in the hospital with the BIGGO jug of morphine. That and the previous excisions were just left open but the new sites are in locations that are too exposed to contamination to leave open. You heard it here first- staples SUCK even worse than Tape and Bandages.
So that is the trail of tears- the good news is that for the first time that in memory- no one is leaking pus (OK except for those 2 in my armpit). Don't know if that will persist but I'm all done doing nothing. I'm determined to have them cut off as fast as they reappear. I do know that the next poor SOB that asks if I have any identifying scars or tattoos is in for a rough day.
Some questions/observations.
During the first surgery within hours of leaving the OR the nurses discovered that the bandages were FULL of pseudomonas. This was the first that I had heard the term but after smelling the bandages noticed that is the exact same smell that the boils have. Pseudomonas is a prime culprit in interferring with healing as I understand it and I'm wondering if there isn't a symbiotic relationship that allows the psuedomonas to defer healing of the lesions in exchange for nutrients they need from the pus.? http://emedicine.medscape.com/article/226748-overview.
After discovering the problem a daily swabbing with Dakins solution (2% Chlorine) clears it right up. I think that is at least partially responsible for the turn around- could be wrong though.. Any others notice this?
All the literature suggests that this is an infection of either sweat glands or hair follices. The curious thing is that in at least a third of the new lesions- there is NO sign of a surface insult. The boil forms, gets huge and then settles without breaking the skin. I wonder if it isn't a subcutaneous problem that MIGHT find that the path of least resistance is through a follice or sweat gland? In other words its not a skin problem at all but a result of some kind of injury to the connective tissues/blood vessels under the skin? The reason this came to light is that the last 2 that I had to have lanced were FULL of anerobic bacteria. Seems that would suggest that the problem came from within.
After reading some here about the zinc gluconate- I'm for sure going to try that. I am also going to try the medicinal honey treatments as well. Prolly have to keep an eye out for ants 8-}
Pretty windy for a first post and I apologize for that- just nice to be able to vent!!!
Thanks,
Colleen
Isn't it good to know that there are others who know what you're going through? I remember an old boyfriend who almost fainted when he walked in on me lancing an abcess. I laughed til I cried!
Yes, HS is subcutaneous. However it is not related to connective tissue or the vascular systems. HS is the blockage of the opening of apocrine sweat glands by a keratinous substance, and subsequent infection caused by the bacteria naturally occurring in sweat/secretions from these glands. The infection grows and the gland ruptures causing the abscesses. Recurring abscesses lead to sinus tracts and the lack of healing of previous lesions which you've experienced.
No, I'm not a doctor. Just another sufferer lucky enough to have a GP who has learned along the way with me how to try to treat the disease. I just recently had surgery to both axillae and groin to remove the HS because NOTHING is working anymore. Hope something I've given you helps. Don't know what else to say. :) Wishing you pain free days. --Lori
http://www.med.umich.edu/obgyn/cvd/HIDRADENITIS_SUPPURATIVA.pdf