Verneuil's disease AKA Hydradenitis Suppurative

Away With The Fairys said:
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!

Oh Gosh! Fingers crossed!

You haven't given many details, but from your description, it looks like it's some kind of infection, and I think that if you're in so much pain, going to the hospital is the best thing to do.

We'll be thinking about you and sending thoughts of healing your way. :hug2:
 
Ailén said:
Away With The Fairys said:
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!

Oh Gosh! Fingers crossed!

You haven't given many details, but from your description, it looks like it's some kind of infection, and I think that if you're in so much pain, going to the hospital is the best thing to do.

We'll be thinking about you and sending thoughts of healing your way. :hug2:
I definitely agree - get thee to a hospital! (and hopefully some relief)
 
Al Today said:
I also think you should get to the hospital AWTF.!.!.!

I agree. Tonight, not tomorrow. You need to be on IV antibiotics. We've sent you some material privately that you can print and take with you in case those bozo doctors don't have a clue.
 
Hopefully you have been able to get helpful medical recognition and treatment AWTF, take good care. :hug2:
 
Laura said:
Al Today said:
I also think you should get to the hospital AWTF.!.!.!

I agree. Tonight, not tomorrow. You need to be on IV antibiotics. We've sent you some material privately that you can print and take with you in case those bozo doctors don't have a clue.

I totally agree.

I had a fistula when I was 18years old, had three surgery and recovery, didn't returned for years only smaller forms.
I had always problems to shave the bikini area it was always inflamed afterwords and I have currently smaller ones on inguinal upper thigh area.
One thing: before I quit to eat sugar I had a ping-pong ball size one right on my bottom and was very painful to sit. I treated it, drain and antibiotic cream, steril gauze.
Sugar is a poison no doubt, I 'm very sensitive to carbs and sometimes eating a little bit more carbs takes it revange on this condition!
One more reason keep eating low carb!

Btw I have also blood type O

Atreides, Away With The Fairys get well soon!
:hug2:
 
Any news on AWTF? Does he have a phone that he can be reached at in hospital?

A bit concerned...
 
Gimpy said:
Any news on AWTF? Does he have a phone that he can be reached at in hospital?

A bit concerned...

We'll be trying to find out something.
 
Laura said:
Gimpy said:
Any news on AWTF? Does he have a phone that he can be reached at in hospital?

A bit concerned...

We'll be trying to find out something.

I just called him, and he's alright (well, I suppose as much as one can be in this situation!). We didn't talk much, but he said he was waiting for the doctor to go to his house (apparently in Denmark you can't just go to the hospital! He/she has to go to your house and determine whether it's necessary or not. :shock:)

He was in a bit less pain. He did a poultice with DMSO, vit C and took penicillin. He slept until 1 pm today, and had recently gotten out of the bath when I called.

He will keep us posted as soon as he has some news, but is hanging in there, sounded positive as usual, and sends everybody a huge THANKS for caring.
 
Thank you Laura, Ailén , and all for you kind thoughts.
(Been reading through the information you have sent me, thanks for those)


Well first off. I am awaiting a lægevagt to come out and assess my situation. This is a doctor who works the weekends and gives the permission for the hospital to accept me over the weekend.

I cant just sign myself in!

Last night after my bath i applied a mixture of dmso , tumeric , vitamin C powder, and magnesium powder and applied it to areas effected.

I rightfully or wrongfully doubled my antibiotics and took some to bed to take in the early hours of the morning.

I awoke to some kind of war happening in the effected areas on my right hand side , a throbbing pressure kind of thing and so threw in another two anti biotic tabs.

I awoke today around 12 oclock , put the heating on so i could take a bath (This takes 2 hours to heat up - 3 hours for it to be really hot and so get more water in the bath)

Took the bath and lay in it for 2 hours.Nodded off to sleep in it.

Pain at present is manageable and have applied once again DMSO , tumeric , vitamin C powder and magnesium powder. Ive also upped my vitamin C orally.

Also more anti biotics.

So that is were I am at.

If the doctor on watch gives me the green light i will be in hospital at some point today.

Not much more to say accept the concoction of DMSO , tumeric , vitamin C powder , and magnesium powder mixed together seems to have lightened the load slightly.

Be back soon. once again thank you and love to all.
 
Hello Away With The Faries,

With my first go around with this, I put off going to the hospital until it was almost to late. They stated that the abcess was about to burst leaving me septic and that is a very bad thing! Can you go to an emergency room now? If so do not delay any longer, go NOW! I'm very sorry you are going through this.
 
Away With The Fairys said:
Be back soon. once again thank you and love to all.

I know someone who has this condition, and she was misdiagnosed as having MRSA (an antibiotic resistant infection) when she went to an emergency room, put in the ICU and pumped full of drugs she didn't need. Having the data you were sent will hopefully prevent that from happening.

Feel better soon hon!! :hug2:
 
Ailén said:
Horseofadifferentcolor said:
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.

Yes mine was not to be graphic but in a very difficult spot, they first called it peri-rectal but then wording changed to fistula. The doctors always seemed shocked that my hole completley healed so mabey they expected for it just to stay a hole! I hope with my diet change it will never happen again, but I will do some research on this filling and print it out if I ever have to be a form of cattle in our awful medical system again. It would be nice to find a real doctor who cares :rolleyes:
 
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