Verneuil's disease AKA Hydradenitis Suppurative

[The rabbit]

Have applied aspirin yesterday and this morning , yes there seems to be a drop in pain level.Thanks for this. Aspirin as a poultice never crossed my mind.

Zinc salts having trouble finding. Upped my zinc tablet intake yesterday.

Will make contact with the specialist who thankfully is based in the area we live in on monday. Will report back if there is anything of value.

I know how it is , to shower after the operation Artriedes and how your feeling. Hang on in there , Just think of those lovely baths coming your way.

 

[Laura]

Have applied aspirin yesterday and this morning , yes there seems to be a drop in pain level.Thanks for this. Aspirin as a poultice never crossed my mind.

Never occurred to us, either, but darned if it doesn't work really well!

Zinc salts having trouble finding. Upped my zinc tablet intake yesterday.

Just taking the zinc gluconate ought to help a lot. Two or three of them a day should do it.

 

[Galaxia2002]

I have used salicilyc acid 1% by seasons (very similar than aspirin, but more specific as keratolityc) in my face for years and is the only thing that help me with clogged pores and peel off very gentle the dead cells. It is also antiinflamatory and antibacterial

The other keratolityc I now is Urea:

http://www.prleap.com/pr/36427/

Urea 35% Lotion, a prescription lotion, joins Glades’ line of Urea 40% Cream, Gel and Lotion products and provides physicians and patients an effective treatment option for hyperkeratosis, or thickening of the skin from the production of excess skin surface proteins. Urea is a proven topical therapy that promotes healing by loosening the skin’s hardened outer layer and shedding scaly skin at recurring intervals.

I have seen disasters in the health of people with prolonged antibiotics treatments. That destroy the balance of bacteria/fungi/yeast in the body and it is very difficult to attain it again even taken probiotics, because the commercials ones have always the same few strands.

Another thing that I have seen as very effective to help cure wounds and even gangrene are the transfers factors (4life)

 

[Horseofadifferentcolor]

I have had four of these very painful surgeries. The first time I went in I had been in pain for about 10 days and was too shy to admit to anyone what was going on. They rushed me in right away saying it was going to pop any time and making me toxic to all my organs leading to a slow death. Wow was that a shocker! I thought I just had hemroids for the first time. They said it started from food poisening.

Four years later(last year) I felt that horrid pain once again and went to the hospital. This time I was told it was basically a pimple that needed to be lanced. Noooooooooooo...... not the problem. After three more magor surguries for fistulas I knew less about why I had them. None of the doctors had any advice! None. All they had to say is it just happens to some people.

After the last surgery and two months of being bed ridden, I could no longer mentally stand the pain. They prescribed me hydrocodine and all that does is make me itch. So there I was in pain and itching. Finally the doctor after me calling over and over for some kind of topical relief from the surgury opening finally recomended Calmoseptine. It has a cool/warm/calming affect on area. It also has zinc in the ingredients.

People really do not understand the toll this takes on your mental well being. I had just buried both of my parents and was watching texas burn right outside of my window during recovery. I really felt a huge sence of doom.

During my recovery time is when I had the chance to read the wave series. I almost cried when I saw this thread on the life without bread lastnight. I wish I had this input then, but I am very thankful to be here now.

 

[Laura]

During my recovery time is when I had the chance to read the wave series. I almost cried when I saw this thread on the life without bread lastnight. I wish I had this input then, but I am very thankful to be here now.

Bless your heart. In our house, we understand the suffering because a beloved member of our family deals with this. It's now openly discussed, no longer a matter of shame and hiding, and we all put our shoulders to the wheel to research it and find solutions. So far, so good. Atriedes will have the wick removed soon and the fibrin glue installed. Hopefully, that will close everything and we'll be taking care from here on out to never have another episode.

 

[Horseofadifferentcolor]

Hello Laura,

I'm so very sorry this is happening to your son. Big hug to him. The hole left from my surgery was about the size of a golf ball and once the drainer guaze was removed it was left open to heal itself. I have never heard of the filling you mentioned. Did they say what this is for? This problem can cause tunnels to other areas and does not always start in the same location so I'm wondering if the filling is something that should be done.

 

[Cosmos]

woow Horseofadifferentcolor you got through a mess there !

thankfully you found this forum !
I don't know if you are aware of the Diet and Health section of this forum and especially the "Life Without Bread" thread ?

I think a proper diet as many of us are practicing here (paleo diet) could improve your condition significantly and prevent your condition from getting out of hand.

thought I mention it to you just in case you are not aware of it.

 

[Laura]

woow Horseofadifferentcolor you got through a mess there !

I think a proper diet as many of us are practicing here (paleo diet) could improve your condition significantly and prevent your condition from getting out of hand.

thought I mention it to you just in case you are not aware of it.

Diet helps but doesn't correct this condition if it is already well-developed for a number of reasons. The main one is that once fistulas have formed, they do not close on their own because they are lined with skin tissue. They have to be induced to close with something like fibrin which is extracted from the person's own blood. And if the fistula is not closed (which it won't on its own no matter what diet you are on) then there is always the blocking from the hyperkeratinosis which then leads to another abcess and spreading infection.

 

[Horseofadifferentcolor]

Yes, and thankyou Pashalis, the life without bread link is where I found this thread. I have been working very hard on my diet. Until last night after reading all that was written on this I did not put two and two together. I just finished all the pages on life without bread today and whewee that was alot of reading! None of the doctors said anything about diet! Grrrr....
Laura the first surgery was four years ago and was the size of a golfball and was left completely open to heal. The first shower is very scary indeed. The last fistula surgery was the same being left open and does close on its own, I have two purple scar marks to prove it. Its really amazing to do that much healing as it was a giant hole. It took three months to fully heal, leaving me to bed rest most of the time. To much movement and it would tear. So if closing it was a better option that was not given to me, it makes me a little upset, because I might have had alot faster recovery time.
The best advice on dealing with this is the calmoseptine and an extending shower head or sitz bath. Also Dr Bronners soap seemed to be very gental around the site.

On a side note.... Laura I am sooooo happy to have found this site and love reading your work. I never imagined that my first conversation with you would be about this. haha

 

[ScottD]

This thread has definitely hit home for me as well. I cannot say I have the HS problem but I have battled cystic acne since I was a teenager. I also have numerous holes and scarred lumps from my tailbone to my nether regions. My jaw line (near my glands) has a number of lesions from past cystic episodes and scarring and scar tissue lumps behind my ear lobes. All of these areas have swollen to the size of a penny or larger at times and I had one lovely lesion removed from my forehead (think Aaron Neville). I went through two treatments of Accutane which were absolutely horrific (it was akin to having an unending sunburn) along with the liver damage likely caused. The treatment did nothing for me so I always just resorted to ignoring it or keeping it hidden (what wasn't on my face). Hiding it is tough when inquisitive people must ask what's on your face.

The only thing that ever really helped me with the pilonidal cysts was a change in diet of course and colloidal silver gel and sometimes from Prid's drawing salve to open the lesions. I might look int the clay regime too! I still have episodes to this day (usually when I am on the road a lot and the tailbone gets inflamed). I have so many 'holes' in me that usually some constant massaging pressure will cause an eruption and it drains. Applications of silver quiets the inflamed areas. It is a difficult task at times though sitting on one butt cheek so as not to apply pressure, especially when driving. I've never sought the surgery since I cannot afford the time off and it was never shown to be 100% effective either.

I feel for your son Laura since it sounds like his is much worse than mine if it has tunneled internally. I certainly hope that never occurs with me. It does interest me how closely related the Pilonidal cysts are with Verneiul's though.

 

[Laura]

I feel for your son Laura since it sounds like his is much worse than mine if it has tunneled internally. I certainly hope that never occurs with me. It does interest me how closely related the Pilonidal cysts are with Verneiul's though.

Thanks to all. What is amazing to me is the number of people who suffer with this - and similar/related - conditions. I hope that all of you will read Elaine Morgen's book "Scars of Evolution" where it talks about how this relates to our evolutionary past. Apparently, these glands and what they do was very much needed and helpful long in the past when human types spent a lot of time in water. For all we know, they were Kantekkians. I would be curious to know how many with this condition have type O blood.

 

[Chu]

The hole left from my surgery was about the size of a golf ball and once the drainer guaze was removed it was left open to heal itself.

Geez, that must really be terrible! I understand about the wound, because it's like what Atreides has. His was about an inch deep, 5 inches long and 3 inches high. It's just terrible.

What seems to accelerate the healing process (the doctor was impressed last time he saw Atreides -but of course, we couldn't tell him about it because he's against "unofficial treatments"-) is to use a special product (it is like artificial fibrin made from seaweed, and can be found at the pharmacy) soaked in a 25% DMSO-75% coloidal silver solution. The DMSO in particular seems to make a great difference.

The, at least one long shower a day, and scrubbing all the skin seems to be preventing other cysts from growing.

I have never heard of the filling you mentioned. Did they say what this is for? This problem can cause tunnels to other areas and does not always start in the same location so I'm wondering if the filling is something that should be done.

We downloaded a few papers about it, which I can send to you and anybody else who is interested. The technique is quite new. But it depends on where the fistula is. I don't know where yours were, but when you have an anal fistula, it won't heal by itself, and there is a high risk of it developing more and more branches, and it you don't catch it in time, there is a chance that the doctor will have to cut your sphincters. With this method, there is only a 20% recurrence and no "butcher job" at all. They put a thread on the fistula, and you have to let it drain for about 8 weeks. Then, they remove the thread and either glue it with a medical "super glue" or with your own natural fibrin extracted from your blood (the centrifuge it). So, we are hoping that this will be the very last time.

But for smaller ones, it's better, I think, to do the showers, the scrubbing, aspirin and DMSO. But as far as I know, if they get very big, sometimes there is no other option except for having it surgically removed. Hopefully, with all we are finding, that won't be necessary for anybody else.

Of course, it's still early to tell, but we DO have lots of hope, and I sincerely hope that all the information you are finding here will help you. It is really good that you know it's not your fault, and that although it was extremely hard for your mind, you can change that. The diet helps a lot with that, for sure. It is as if the more you learn about everything, the stronger your body becomes.

 

[Chu]

Have applied aspirin yesterday and this morning , yes there seems to be a drop in pain level.Thanks for this. Aspirin as a poultice never crossed my mind.

Experimenting with the aspirin has proven to be very good! However, we noticed that after a while, if you do it too often, it can cause some irritation. So, now we alternate between the aspirin and the 25%DMSO solution in a gauze. That seems to do the trick.

Btw, just in case: You don't need a lot of aspirins, just one and a drop of water, let it dissolve (become a paste) and then apply it with a swab or small tweezers. Before our friend told us this, we were using much more than that, which made the poultice too heavy and uncomfortable for Atreides.

I hope you feel better soon!

 

[The rabbit]

Have applied aspirin yesterday and this morning , yes there seems to be a drop in pain level.Thanks for this. Aspirin as a poultice never crossed my mind.

Experimenting with the aspirin has proven to be very good! However, we noticed that after a while, if you do it too often, it can cause some irritation. So, now we alternate between the aspirin and the 25%DMSO solution in a gauze. That seems to do the trick.

Btw, just in case: You don't need a lot of aspirins, just one and a drop of water, let it dissolve (become a paste) and then apply it with a swab or small tweezers. Before our friend told us this, we were using much more than that, which made the poultice too heavy and uncomfortable for Atreides.

I hope you feel better soon!

Unfotunately after the first time it did not work for me.

Presently I am in great pain , things are not getting any better , in fact worse.I can hardly walk now , feels like i have shards of glass on top of both legs on the inside of each leg and in towards the groin . I was able to get on a bus to the doctors for more anti biotics the other day , but they are doing nothing for me.

The both sides of my buttocks have a long line of swelling. Ive put the water on to have yet another bath.

The Hammer and our child have gone to her parents for a few days. Im planning on checking myself into the hospital tomorrow morning and hope they will do something for me.

I feel that I have seriously had enough!

 

[ScottD]

Thanks to all. What is amazing to me is the number of people who suffer with this - and similar/related - conditions. I hope that all of you will read Elaine Morgen's book "Scars of Evolution" where it talks about how this relates to our evolutionary past. Apparently, these glands and what they do was very much needed and helpful long in the past when human types spent a lot of time in water. For all we know, they were Kantekkians. I would be curious to know how many with this condition have type O blood.

I tend to keep this condition under wraps (literally) but If I have spoken about it a LOT of people have told me they have had similar conditions, surgeries (sometimes multiples), and have even been told it was called Jeep Butt (coined during WWII where soldiers got lesions on their tailbones from riding in jeeps). I never considered it as anything more than a personal affliction until now.

I am Type O and now I am intrigued about Morgen's book...