Verneuil's disease AKA Hydradenitis Suppurative
- Thread starter Laura
- Start date
Herr Eisenheim said:Gimpy said::(
Hang in there!
Will be thinking of you.
Ditto AWTF - may the force be with you!
Wishing a speed recovery to both Atreides and AWTF!
Before this thread I've never heard of this condition and I really can't remember of anyone, relative or not, who has suffered this condition, if not for the more usual chronic colon diseases that are quite widespead here.
I'm Type O+ and I've fought with spots and moles since I was 14, and perhaps my 'fortune' was that the reaction I had to certain foods, sugars, alcohol and grains was so quick to show up on my skin that very often after a period of excesses I had to spend a 10x period recovering eating broths, boiled fish, rice and tea instead of coffee and milk - often in bed with fever for weeks. A spring allergy nearly killed me as a kid, and mosquitoes and bees always made my skin swell uncontrollably until very recently. Had a few black moles removed surgically behind my neck once, and a number of subcutaneous cysts under the jaw that took months, if not years to disappear, slowly moving from the inside to the surface of the skin.
Anyway, nothing comparable to this most odd disease!
The water trick could have done something to keep me alive when I was a kid, supposedly. First of all I've always run up 'n down the hills like crazy for all my infancy and teenage days, so burning more energy than a whole town. Secondly at the time my father was able to send the whole family to the sea, likely 2 to 3 full months a year, and every day I was there on the sea for hours and hours, not to mention the time spent under the public showers - and Mama calling me 'little fish' for years to come. And during the winter season there were those never ending swimming courses at the public pool.
Sorry for the personal digression here, but recently this question 'how possibly have we survived?' after a lifetime of poisons injected in our bodies still makes my memories run in a loop once in awhile.
Take care!
I've never heard of this disease either, and I'm sorry that Atreides, AWTF, and many other members have had to deal with it. It makes me wonder what other diseases may have resulted from us not being in water, so Elaine's book is now on the "To Read" list.
Best of luck to you guys! I hope you recover soon.
Best of luck to you guys! I hope you recover soon.
I start this post with apologies to all.
I decided not to go to hospital. Not yet anyway. The main reason being I was scared.Simple as that.
After my last post here the pain levels had dropped , I could think a little clearer.
I will plan my going into hospital rather than being flung into the back of an ambulance and then be passed along the medical conveyerbelt.
Thats what happened four years ago (Aprox) everything happened so fast , i ended up having no less than six operations within 14 days.They butchered me below and have left scars everywhere with lumps of folded flesh which makes it very difficult to clean everywhere easily.
I did not want to go through this again and with no one by my side to keep an eye on what was going on in the Danish language.
I have continued with the concoction of a teaspoon of each in a glass and then mixed. Vitamin C powder , Magnesium citrate powder, turmeric , and DMSO.
I apply it straight after each bath. then i put a second application on 15 minutes after the first application.By then the ingredients have crystalized into a kind of thicker paste.
I cant say whether I have come up with a solution here of worth . but inflammation is down , pain levels are down , I can walk without limping etc , but most importantly I can think , focus.
Sleep has been important , and also the freedom to walk around the house for the last 48 hours and presently with no trousers on :)
The material that Laura and Ailén got to me has give me much to think about and gives me a better insight into what Artreides has gone through. Brother my thoughts are with you.
The Hammer has a months holiday coming up in a few weeks time , I will start to plan in the right way my approach to entering the hospital and getting things done.
My doctor is having a word with the specialist who deals with HS to see if he can get an earlier appointment for me to see him.Presently the specialist has penciled me in for November.
I feel deeply embarrassed writing this to you all.
I feel like the boy who cried wolf or something similar.
Before i entered hospital 4 years ago I had left it much too long.When they took me in I had no real thoughts , just pain. I promise myself I will not allow it to reach that point again.
My apologies once again. Thank you for your concern.Love to all.
I decided not to go to hospital. Not yet anyway. The main reason being I was scared.Simple as that.
After my last post here the pain levels had dropped , I could think a little clearer.
I will plan my going into hospital rather than being flung into the back of an ambulance and then be passed along the medical conveyerbelt.
Thats what happened four years ago (Aprox) everything happened so fast , i ended up having no less than six operations within 14 days.They butchered me below and have left scars everywhere with lumps of folded flesh which makes it very difficult to clean everywhere easily.
I did not want to go through this again and with no one by my side to keep an eye on what was going on in the Danish language.
I have continued with the concoction of a teaspoon of each in a glass and then mixed. Vitamin C powder , Magnesium citrate powder, turmeric , and DMSO.
I apply it straight after each bath. then i put a second application on 15 minutes after the first application.By then the ingredients have crystalized into a kind of thicker paste.
I cant say whether I have come up with a solution here of worth . but inflammation is down , pain levels are down , I can walk without limping etc , but most importantly I can think , focus.
Sleep has been important , and also the freedom to walk around the house for the last 48 hours and presently with no trousers on :)
The material that Laura and Ailén got to me has give me much to think about and gives me a better insight into what Artreides has gone through. Brother my thoughts are with you.
The Hammer has a months holiday coming up in a few weeks time , I will start to plan in the right way my approach to entering the hospital and getting things done.
My doctor is having a word with the specialist who deals with HS to see if he can get an earlier appointment for me to see him.Presently the specialist has penciled me in for November.
I feel deeply embarrassed writing this to you all.
I feel like the boy who cried wolf or something similar.
Before i entered hospital 4 years ago I had left it much too long.When they took me in I had no real thoughts , just pain. I promise myself I will not allow it to reach that point again.
My apologies once again. Thank you for your concern.Love to all.
Mrs.Tigersoap
The Living Force
AWTF, when one reads about the way you were treated in the hospital the last time, no wonder you are scared to go back!! 6 operations in 14 days, and badly carried out to boot! 
It's good that your inflammation and pain are down but please be very careful to monitor your condition, as apparently, this type of disease degenerates quite quickly. But you know that, of course.
When you talk about seeing the specialist in November, do you mean that you need to see him before going to the hospital? That seems like a awfully long time to wait, no? I'm just worried that with such a delayed appointment, you might reach again that point you were referring to here:
Take care, AWTF.
It's good that your inflammation and pain are down but please be very careful to monitor your condition, as apparently, this type of disease degenerates quite quickly. But you know that, of course.
When you talk about seeing the specialist in November, do you mean that you need to see him before going to the hospital? That seems like a awfully long time to wait, no? I'm just worried that with such a delayed appointment, you might reach again that point you were referring to here:
AWTF said:
Take care, AWTF.
truth seeker
The Living Force
Don't. It's perfectly understandable why you don't want to go. I can't and won't give you advise as to what you should do but will just say that we're here for you whatever you decide. Big hugs, AWTF.Away With The Fairys said:
Hopefully, with a diagnosis and an HS specialist, you will finally get the correct treatment. And if you are taking the Zinc, on the diet, and soaking in the tub daily, you won't have any recurrences... just have to fix up the damage done. Don't play with that rule about being in water every single day for long enough to wrinkle your fingertips. It really does something.
Gimpy
The Living Force
No need for embarrassment.
My Hubby has HDS, and so do I, though both cases are mild. We are both O blood-types, too. As long as we stick to the Paleo diet, its all good. I've only had one flare up, and I've nursed Hubby through several.
We know what you're going through, along with Atreidies, and feel keenly for you. Please keep in touch!
I've seen some pictures of this surgery and it looks like a horrific thing to heal, especially as an open wound. I can appreciate the comfort of not wearing trousers!
My younger sister is paraplegic and got a pressure sore that would not heal after 8 weeks so it was decided to surgically remove it when it started to show gangrenous changes. It was over the 'pin' bone in her buttock and even though they could transfer fat and tissue from an area of her thigh to re pad the area and place a skin graft over it it was another 14 weeks in healing before she could get back to her usual day to day life. So I've had some kind of second hand experience of the pain, frustration, weariness and dejection that you all may be going through and my thoughts are with you all.
My younger sister is paraplegic and got a pressure sore that would not heal after 8 weeks so it was decided to surgically remove it when it started to show gangrenous changes. It was over the 'pin' bone in her buttock and even though they could transfer fat and tissue from an area of her thigh to re pad the area and place a skin graft over it it was another 14 weeks in healing before she could get back to her usual day to day life. So I've had some kind of second hand experience of the pain, frustration, weariness and dejection that you all may be going through and my thoughts are with you all.
First of all Thank you , you all certainly lighten my load which I am most appreciative of.My thanks.
No. it would be nice to be able to go that long without having to go into hospital , to see if he has a plan. I will go to the hospital in August and see if we can just go for drainage. The thing is locale anesthetic dont do it for me , i have to have the full knock out treatment. Sounds strange but as i am fair skinned (and once a red head -auburn) i really am sensitive to pain.its kind of amplified when external tools are used.
Yes my impatience with being in the tub for over an hour and a half has been difficult and this two to three times a day , sure gets boring, BUT the results are definitely more favorable when done.
Yes I have been keeping up with the zinc. Thanks.
My wife is a nurse who works at the paraplegic ward here in the city , she witnesses this quite frequently . She has just informed me that there is a small machine called a PICO which creates a vacuum which will let the wound heal a lot quicker.
http://www.sparkingdawn.com/2012/05/pico-machines-medical-vacuum-wound-healing/
The tiny vacuum, called the PICO machine, looks like a regular vacuum, but is made of disposable, sterile dressings and suction tubes. When applied to a wound or skin lesion, the PICO machine creates a seal and then applies the suction vacuums are known for.
Not only is new blood being pulled into the site, but any foreign objects or excess fluid are also pulled away from the location. The type of healing is called negative pressure healing.
A recent study with over 200 participants found that people who received negative pressure healing had 50 percent less incidence of post-surgical infections. Wound re-opening was also significantly reduced.
Mrs.Tigersoap said:
No. it would be nice to be able to go that long without having to go into hospital , to see if he has a plan. I will go to the hospital in August and see if we can just go for drainage. The thing is locale anesthetic dont do it for me , i have to have the full knock out treatment. Sounds strange but as i am fair skinned (and once a red head -auburn) i really am sensitive to pain.its kind of amplified when external tools are used.
Laura said:
Yes my impatience with being in the tub for over an hour and a half has been difficult and this two to three times a day , sure gets boring, BUT the results are definitely more favorable when done.
Yes I have been keeping up with the zinc. Thanks.
Jones said:
My wife is a nurse who works at the paraplegic ward here in the city , she witnesses this quite frequently . She has just informed me that there is a small machine called a PICO which creates a vacuum which will let the wound heal a lot quicker.
http://www.sparkingdawn.com/2012/05/pico-machines-medical-vacuum-wound-healing/
The tiny vacuum, called the PICO machine, looks like a regular vacuum, but is made of disposable, sterile dressings and suction tubes. When applied to a wound or skin lesion, the PICO machine creates a seal and then applies the suction vacuums are known for.
Not only is new blood being pulled into the site, but any foreign objects or excess fluid are also pulled away from the location. The type of healing is called negative pressure healing.
A recent study with over 200 participants found that people who received negative pressure healing had 50 percent less incidence of post-surgical infections. Wound re-opening was also significantly reduced.
Away With The Fairys said:
You don't have to get in the tub 3 times a day, just once. The other two times should be something like 5 or 10 minutes in the shower. Prolly 30 minutes max is good enough in the tub. When I want to take a soak, I usually have music playing and know that 10 songs is the limit.