Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 The doctors wanted me to try the compressed stocking (like ued after surgrey) but I thought that would just increase the pain so I refused. I did do DERMA DERM patches but they made it worse. Last spring I broke my ankle that I have pyroderma on. I think the cast helped heal the ankle or was it the extra sitting and elevating. After I starting walking more normal level the ulcer reopened. It is such a slow process and My doctor is always trying a combination of thing so some times it hard to say what is helping. Unfortunatly what helps me the most is prednisone. I would think if you have done that for 18 months and no improvement it may be time to try something else. > > Subject: Compression bandages > To: erythema_nodosum_Group > Date: Monday, January 25, 2010, 5:03 PM > > > > > > > > > > > > > > > > Â > > > > > > > > > > I have been getting bandaged twice a week now for > about 18 months and I am starting to wonder wether its > actually effective. The bandage is thick and stops me moving > my ankle properly or wearing proper shoes. My question is... > Does anyone else have experience of compression bandages > being used to treat PG ( and EN where suitable ) and if so, > did they help? Of course I know I need bandages of some sort > and I am told that the compression ones ( possibly called > something else in USA?? ) are what is normally used. It > consists of a thick layer of cotton wool wadding over > suitable wound dressings then 2 layers of cotten bandages > and a thick stretchy outer layer, overall the thing looks a > bit like a thin plaster cast but is more flexible than > plaster. > > > > Thanks > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 This bandaging is a bit different!! I have just uploaded a picture ( waiting for approval ) so you can see. The tube in it is from the vacuum system that was removing fluid, but I dont use that any more. I know the compression stockings you refer to, they are the same as the ones you can get for avoiding DVT on long flights. As you can see from the pic, this isnt the same at all!! I agree that the compression stocking would probably put too much pressure on a PG site and the only reason I can take the pressure of this compression system is the large amount of padding that spreads the force. I have been using prednisone ( called prednisolone here ) for the same 18 months at varying doses. You are totally right that 18 months is time to try something else and any suggestions for successful treatments are very welcome. Thanks Luke > > > > > Subject: Compression bandages > > To: erythema_nodosum_Group > > Date: Monday, January 25, 2010, 5:03 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week now for > > about 18 months and I am starting to wonder wether its > > actually effective. The bandage is thick and stops me moving > > my ankle properly or wearing proper shoes. My question is... > > Does anyone else have experience of compression bandages > > being used to treat PG ( and EN where suitable ) and if so, > > did they help? Of course I know I need bandages of some sort > > and I am told that the compression ones ( possibly called > > something else in USA?? ) are what is normally used. It > > consists of a thick layer of cotton wool wadding over > > suitable wound dressings then 2 layers of cotten bandages > > and a thick stretchy outer layer, overall the thing looks a > > bit like a thin plaster cast but is more flexible than > > plaster. > > > > > > > > Thanks > > > > > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Luke -- I had daily wound dressing with compression bandages for almost three months and just like you I was unable to move my ankle properly or wear proper shoes. Good thing the weather was always good in the Azores so I wore sandals most of the time. I thought they were inconvenient, but was pleasantly surprised that after three months, the swelling has gone down somewhat, the wound looks like it's healing well and now I am able to wear closed shoes again! There is hope -- but my doctor and nurses really stressed that compression bandages will help with the healing. I hate the itching and basically just feeling like I'm a walking mummy, but glad that it has helped somewhat. Best, Flo To: erythema_nodosum_Group Sent: Mon, January 25, 2010 6:03:14 PMSubject: Compression bandages I have been getting bandaged twice a week now for about 18 months and I am starting to wonder wether its actually effective. The bandage is thick and stops me moving my ankle properly or wearing proper shoes. My question is... Does anyone else have experience of compression bandages being used to treat PG ( and EN where suitable ) and if so, did they help? Of course I know I need bandages of some sort and I am told that the compression ones ( possibly called something else in USA?? ) are what is normally used. It consists of a thick layer of cotton wool wadding over suitable wound dressings then 2 layers of cotten bandages and a thick stretchy outer layer, overall the thing looks a bit like a thin plaster cast but is more flexible than plaster.ThanksLuke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Luke I have been dealing with the same ulcer for 26 months. Well I say the same ulcer but the ulcer gets about 80% healed and then it move over to one end and starts a new ulcer so I have healing and breaking out at the same time. mime looke real similar to yours. I have been on the up and down of prednisone, Imuran cytoxan cyclossporine remicade hyperbaric oxygen and whirlpool. Everything helped for a while then when got to 30mg or less on the prednisone the ulcer would get worse. Now I am trying whirlpool, remicade, prednisone and dapsone. I also do wet dressings with aectic acid ( vinegar and water. I would love to have the magic answer also. Dianne > > Subject: Re: Compression bandages > To: erythema_nodosum_Group > Date: Monday, January 25, 2010, 6:14 PM > > > > > > > > > > > > > > > >  > > > > > > > > > > This bandaging is a bit different!! > > I have just uploaded a picture ( waiting for approval ) so > you can see. The tube in it is from the vacuum system that > was removing fluid, but I dont use that any more. > > > > I know the compression stockings you refer to, they are the > same as the ones you can get for avoiding DVT on long > flights. As you can see from the pic, this isnt the same at > all!! > > > > I agree that the compression stocking would probably put > too much pressure on a PG site and the only reason I can > take the pressure of this compression system is the large > amount of padding that spreads the force. > > > > I have been using prednisone ( called prednisolone here ) > for the same 18 months at varying doses. > > > > You are totally right that 18 months is time to try > something else and any suggestions for successful treatments > are very welcome. > > > > Thanks > > > > Luke > > > > > > > > > > > From: lukeukluke <lukeluke999@ ...> > > > > Subject: [erythema_nodosum_ Group] Compression > bandages > > > > To: erythema_nodosum_ > Group@yahoogroup s.com > > > > Date: Monday, January 25, 2010, 5:03 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week > now for > > > > about 18 months and I am starting to wonder > wether its > > > > actually effective. The bandage is thick and > stops me moving > > > > my ankle properly or wearing proper shoes. My > question is... > > > > Does anyone else have experience of compression > bandages > > > > being used to treat PG ( and EN where suitable ) > and if so, > > > > did they help? Of course I know I need bandages > of some sort > > > > and I am told that the compression ones ( > possibly called > > > > something else in USA?? ) are what is normally > used. It > > > > consists of a thick layer of cotton wool wadding > over > > > > suitable wound dressings then 2 layers of cotten > bandages > > > > and a thick stretchy outer layer, overall the > thing looks a > > > > bit like a thin plaster cast but is more flexible > than > > > > plaster. > > > > > > > > > > > > > > > > Thanks > > > > > > > > > > > > > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 I've had ulcers on both legs for over a year now. I saw a big difference -- the wounds dried up and are now slowly healing -- even the huge one on my right leg after my doctor prescribed me Colchicine and doing daily wound care using Aqua-Cel. I was also taking SSKI but had minimal results from that. Just thought I'd share this info with the group. Best, Flo EN/EI To: erythema_nodosum_Group Sent: Tue, January 26, 2010 12:08:11 AMSubject: Re: Re: Compression bandages Luke I have been dealing with the same ulcer for 26 months. Well I say the same ulcer but the ulcer gets about 80% healed and then it move over to one end and starts a new ulcer so I have healing and breaking out at the same time.mime looke real similar to yours. I have been on the up and down of prednisone, Imuran cytoxan cyclossporine remicade hyperbaric oxygen and whirlpool. Everything helped for a while then when got to 30mg or less on the prednisone the ulcer would get worse. Now I am trying whirlpool, remicade, prednisone and dapsone. I also do wet dressings with aectic acid ( vinegar and water.I would love to have the magic answer also.Dianne> From: lukeukluke <lukeluke999@ hotmail.com>> Subject: [erythema_nodosum_ Group] Re: Compression bandages> To: erythema_nodosum_ Group@yahoogroup s.com> Date: Monday, January 25, 2010, 6:14 PM> > > > > > > > > > > > > > > > > > > > > > > > > > This bandaging is a bit different!!> > I have just uploaded a picture ( waiting for approval ) so> you can see. The tube in it is from the vacuum system that> was removing fluid, but I dont use that any more.> > > > I know the compression stockings you refer to, they are the> same as the ones you can get for avoiding DVT on long> flights. As you can see from the pic, this isnt the same at> all!!> > > > I agree that the compression stocking would probably put> too much pressure on a PG site and the only reason I can> take the pressure of this compression system is the large> amount of padding that spreads the force.> > > > I have been using prednisone ( called prednisolone here )> for the same 18 months at varying doses. > > > > You are totally right that 18 months is time to try> something else and any suggestions for successful treatments> are very welcome.> > > > Thanks> > > > Luke> > > > > > > > > > > From: lukeukluke <lukeluke999@ ...>> > > > Subject: [erythema_nodosum_ Group] Compression> bandages> > > > To: erythema_nodosum_> Group@yahoogroup s.com> > > > Date: Monday, January 25, 2010, 5:03 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week> now for> > > > about 18 months and I am starting to wonder> wether its> > > > actually effective. The bandage is thick and> stops me moving> > > > my ankle properly or wearing proper shoes. My> question is...> > > > Does anyone else have experience of compression> bandages> > > > being used to treat PG ( and EN where suitable )> and if so,> > > > did they help? Of course I know I need bandages> of some sort> > > > and I am told that the compression ones (> possibly called> > > > something else in USA?? ) are what is normally> used. It> > > > consists of a thick layer of cotton wool wadding> over> > > > suitable wound dressings then 2 layers of cotten> bandages> > > > and a thick stretchy outer layer, overall the> thing looks a> > > > bit like a thin plaster cast but is more flexible> than> > > > plaster.> > > > > > > > > > > > > > > > Thanks> > > > > > > > > > > > > > > > Luke> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> > >> > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Flo Thanks for the information. I have never heard of Colchicine, it looks like it is an anti-inflamatory drug. I a glad that the compresion bandages worked for you, maybe I do indeed have to give them more time. How large was the ulcer on your right leg? What dressings did they use between your leg and the compression bandage? At the moment I am using Mepitel, which is a sort of rubber non adherant dressing but it seems to leave things with more moisture than other dressings so I need to find the right mixture of non-adherance and absorbency. I am glad that the dressings have worked for you and that your wounds are healing, hopefully they will continue to do so. Luke > > > > > > > > > > > From: lukeukluke <lukeluke999@ ...> > > > > > > Subject: [erythema_nodosum_ Group] Compression > > bandages > > > > > > To: erythema_nodosum_ > > Group@yahoogroup s.com > > > > > > Date: Monday, January 25, 2010, 5:03 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week > > now for > > > > > > about 18 months and I am starting to wonder > > wether its > > > > > > actually effective. The bandage is thick and > > stops me moving > > > > > > my ankle properly or wearing proper shoes. My > > question is... > > > > > > Does anyone else have experience of compression > > bandages > > > > > > being used to treat PG ( and EN where suitable ) > > and if so, > > > > > > did they help? Of course I know I need bandages > > of some sort > > > > > > and I am told that the compression ones ( > > possibly called > > > > > > something else in USA?? ) are what is normally > > used. It > > > > > > consists of a thick layer of cotton wool wadding > > over > > > > > > suitable wound dressings then 2 layers of cotten > > bandages > > > > > > and a thick stretchy outer layer, overall the > > thing looks a > > > > > > bit like a thin plaster cast but is more flexible > > than > > > > > > plaster. > > > > > > > > > > > > > > > > > > > > > > > > Thanks > > > > > > > > > > > > > > > > > > > > > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Luke, Colchicine is mostly used for treatment of gout -- my brother uses it for that purpose and I was suprised my doctor recommended it. He initially wanted me to use this experimental drug, Regranex; however, recently there are cases when patients developed cancer after using 3 tubes of this medication/gel. I jokingly asked if we could only use 2 tubes but he didn't buy that. (-: He prescribed Cochicine and two days after I started taking it, once a day for the first week and then twice a day thereafter, I noticed that the ulcers have considerably dried up. There used to be a lot of oozing and yellow exudates but I was pleasantly surprised to see the smaller ulcers totally dry -- just a bit moist in the middle. I have two small but deep ones on the left leg caused by the biopsy six months ago and those look almost healed. There's another big one on the inside part of my ankle and half of that has scabbed over. I have a huge one on my right leg which still has some oozing but compared to before, it is so much better, The wound seems to slowly contracting -- getting smaller and it has less yellow exudate and more red tissues inside of it. It is also shallower -- not deep like before. I have two other smaller mid sized ones on the same legs that are also slowly healing. My wound care nurses in Portugal used Aqua-Cel over the wound to draw out the exudates. They also did manual debridement of the wound, which was truly painful but I guess also helped in the healing. I stopped using the plastic coated dressing -- we call it Telfa dressing here in the U.S., as I noticed that my wounds were getting irritated by it and the skin surrounding the ulcers actually developed some sort of eczema. They used the Aqua-Cel over the wound, used topical oinment, I think it was Betamethasone but now I'm using Triamcinolone on the skin surrounding the ulcers, used sterile pads, cotton padding on top of that, and wrapped everything in flexible bandage. They also wrapped my legs with compression bandages -- supposedly to help with circulation and help the wound heal. The biggest ulcer on my right leg is probably about 2"x2." Although it shows healing, my legs still hurt a lot -- the sites of the ulcers are painful and I also get joint paints in my ankle and knees. Regardless, I'm just thankful that the ulcers are slowly healing albeit very slowly. Flo To: erythema_nodosum_Group Sent: Tue, January 26, 2010 8:26:51 AMSubject: Re: Compression bandages Hi FloThanks for the information. I have never heard of Colchicine, it looks like it is an anti-inflamatory drug. I a glad that the compresion bandages worked for you, maybe I do indeed have to give them more time. How large was the ulcer on your right leg? What dressings did they use between your leg and the compression bandage? At the moment I am using Mepitel, which is a sort of rubber non adherant dressing but it seems to leave things with more moisture than other dressings so I need to find the right mixture of non-adherance and absorbency.I am glad that the dressings have worked for you and that your wounds are healing, hopefully they will continue to do so.Luke> > > > > > > > > > > From: lukeukluke <lukeluke999@ ...>> > > > > > Subject: [erythema_nodosum_ Group] Compression> > bandages> > > > > > To: erythema_nodosum_> > Group@yahoogroup s.com> > > > > > Date: Monday, January 25, 2010, 5:03 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week> > now for> > > > > > about 18 months and I am starting to wonder> > wether its> > > > > > actually effective. The bandage is thick and> > stops me moving> > > > > > my ankle properly or wearing proper shoes. My> > question is...> > > > > > Does anyone else have experience of compression> > bandages> > > > > > being used to treat PG ( and EN where suitable )> > and if so,> > > > > > did they help? Of course I know I need bandages> > of some sort> > > > > > and I am told that the compression ones (> > possibly called> > > > > > something else in USA?? ) are what is normally> > used. It> > > > > > consists of a thick layer of cotton wool wadding> > over> > > > > > suitable wound dressings then 2 layers of cotten> > bandages> > > > > > and a thick stretchy outer layer, overall the> > thing looks a> > > > > > bit like a thin plaster cast but is more flexible> > than> > > > > > plaster.> > > > > > > > > > > > > > > > > > > > > > > > Thanks> > > > > > > > > > > > > > > > > > > > > > > > Luke> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Flo Thankyou for the details, since joining this group I am learning a lot about other alternative treatments and ones that have been successful. Cochicine seems to have been the perfect treatment for you, I am also starting to see similarities in peoples experiences in that the larger the ulcers, the slower the healing, I suppose thats common sense but the doctors done seem to have picked up on it. My largest ulcer is currently approx 6 " x 5 " and has similar oozing to what you describe, I have found that some of it is from the wound and some is 'slough' which is a mixture of fluids and of dead skin. I have found that a mixture of oral morphine and liberal doses of Nitrous Oxide are very useful when undergoing debridements and dressing changes as well. It took me a long time to ask for the nitrous and I suffered rather a lot before I realised that it was better to tell someone about the pain rather than appear to be the macho man. It is difficult for other people to understand the pain involved and the sensitive nature of the skin around the ulcers too. Unfortunately I am cursed with hairy legs and so the nurses tend to assume that any pain I am feeling is 'hairs being pulled' rather than a hypersensitivity. It sounds like the compression bandages were deinately helpful in your case, thankyou for the information. Luke > > > > > > > > > > > > > > > From: lukeukluke <lukeluke999@ ...> > > > > > > > > Subject: [erythema_nodosum_ Group] Compression > > > bandages > > > > > > > > To: erythema_nodosum_ > > > Group@yahoogroup s.com > > > > > > > > Date: Monday, January 25, 2010, 5:03 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week > > > now for > > > > > > > > about 18 months and I am starting to wonder > > > wether its > > > > > > > > actually effective. The bandage is thick and > > > stops me moving > > > > > > > > my ankle properly or wearing proper shoes. My > > > question is... > > > > > > > > Does anyone else have experience of compression > > > bandages > > > > > > > > being used to treat PG ( and EN where suitable ) > > > and if so, > > > > > > > > did they help? Of course I know I need bandages > > > of some sort > > > > > > > > and I am told that the compression ones ( > > > possibly called > > > > > > > > something else in USA?? ) are what is normally > > > used. It > > > > > > > > consists of a thick layer of cotton wool wadding > > > over > > > > > > > > suitable wound dressings then 2 layers of cotten > > > bandages > > > > > > > > and a thick stretchy outer layer, overall the > > > thing looks a > > > > > > > > bit like a thin plaster cast but is more flexible > > > than > > > > > > > > plaster. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Luke My understanding is that mannual removal of tissue should not be done. My Dr. says no removal of old skin or no cutting. As I was preparing to HBO and whirlpool closer to home he said DO NOT LET ANYONE TOUCH IT perhaps Jeff know more about this. I have caused trama in the ulcer just by twisting my ankle. Last Jan. my ulcer was really bad I was put in the hospital and was given IV antiboics that seem to really help. I was given yeast fungal and batercia. Dianne > > Subject: Re: Compression bandages > To: erythema_nodosum_Group > Date: Tuesday, January 26, 2010, 2:47 PM > > > > > > > > > > > > > > > >  > > > > > > > > > > Hi Flo > > Thankyou for the details, since joining this group I am > learning a lot about other alternative treatments and ones > that have been successful. Cochicine seems to have been the > perfect treatment for you, I am also starting to see > similarities in peoples experiences in that the larger the > ulcers, the slower the healing, I suppose thats common sense > but the doctors done seem to have picked up on it. My > largest ulcer is currently approx 6 " x 5 " and has > similar oozing to what you describe, I have found that some > of it is from the wound and some is 'slough' which > is a mixture of fluids and of dead skin. > > I have found that a mixture of oral morphine and liberal > doses of Nitrous Oxide are very useful when undergoing > debridements and dressing changes as well. It took me a long > time to ask for the nitrous and I suffered rather a lot > before I realised that it was better to tell someone about > the pain rather than appear to be the macho man. It is > difficult for other people to understand the pain involved > and the sensitive nature of the skin around the ulcers too. > Unfortunately I am cursed with hairy legs and so the nurses > tend to assume that any pain I am feeling is 'hairs > being pulled' rather than a hypersensitivity. It sounds > like the compression bandages were deinately helpful in your > case, thankyou for the information. > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > From: lukeukluke <lukeluke999@ > ...> > > > > > > > > > > > > Subject: [erythema_nodosum_ Group] > Compression > > > > > bandages > > > > > > > > > > > > To: erythema_nodosum_ > > > > > Group@yahoogroup s.com > > > > > > > > > > > > Date: Monday, January 25, 2010, > 5:03 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice > a week > > > > > now for > > > > > > > > > > > > about 18 months and I am starting > to wonder > > > > > wether its > > > > > > > > > > > > actually effective. The bandage is > thick and > > > > > stops me moving > > > > > > > > > > > > my ankle properly or wearing > proper shoes. My > > > > > question is... > > > > > > > > > > > > Does anyone else have experience > of compression > > > > > bandages > > > > > > > > > > > > being used to treat PG ( and EN > where suitable ) > > > > > and if so, > > > > > > > > > > > > did they help? Of course I know I > need bandages > > > > > of some sort > > > > > > > > > > > > and I am told that the compression > ones ( > > > > > possibly called > > > > > > > > > > > > something else in USA?? ) are what > is normally > > > > > used. It > > > > > > > > > > > > consists of a thick layer of > cotton wool wadding > > > > > over > > > > > > > > > > > > suitable wound dressings then 2 > layers of cotten > > > > > bandages > > > > > > > > > > > > and a thick stretchy outer layer, > overall the > > > > > thing looks a > > > > > > > > > > > > bit like a thin plaster cast but > is more flexible > > > > > than > > > > > > > > > > > > plaster. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Dianne Of course you are right, there should be no removal of skin tissue other than any necrotic tissue that could cause infections. Unfortunately nobody told that to the surgeon that cut a massive hole in my leg!! All that happens if you allow anyone to cut away any healthy tissue, all you do is give the PG more of an area to work on and as I said, the larger the ulcer, the longer it takes to heal. If I knew then what I know noe, I would never have allowed them to cut ANY skin away, never mind such a large area. At the time they were planning to clear the area in order to skin graft over the top of it, of course we all know that skin graft is VERY rarely successful on a PG ulcer and that was true in my case, the graft failed and so I was left with a big hole, lots of pain and a plastic surgeon who refused to talk to me incase I accused him of being responsible for making things worse and not determining an underlying cause. I didnt even hear of PG until after the debridement. I am sure that I am not the only person who was sent to see the wrong specialist at the start. I have also had spells in hospital getting IV antibiotics, of course, the bigger the hole in your leg, the more likely you are to get infections. I have had about 4 courses of IV antibiotics ranging from 3 days to 3 weeks in duration. On each occasion the pain had gotten much worse for no obvious reason and it turned out to be an infection, dealing with the infections solved the short term pain increase. I hope your ankle and your PG is better. Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > From: lukeukluke <lukeluke999@ > > ...> > > > > > > > > > > > > > > > > Subject: [erythema_nodosum_ Group] > > Compression > > > > > > > bandages > > > > > > > > > > > > > > > > To: erythema_nodosum_ > > > > > > > Group@yahoogroup s.com > > > > > > > > > > > > > > > > Date: Monday, January 25, 2010, > > 5:03 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ÃÆ'‚ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice > > a week > > > > > > > now for > > > > > > > > > > > > > > > > about 18 months and I am starting > > to wonder > > > > > > > wether its > > > > > > > > > > > > > > > > actually effective. The bandage is > > thick and > > > > > > > stops me moving > > > > > > > > > > > > > > > > my ankle properly or wearing > > proper shoes. My > > > > > > > question is... > > > > > > > > > > > > > > > > Does anyone else have experience > > of compression > > > > > > > bandages > > > > > > > > > > > > > > > > being used to treat PG ( and EN > > where suitable ) > > > > > > > and if so, > > > > > > > > > > > > > > > > did they help? Of course I know I > > need bandages > > > > > > > of some sort > > > > > > > > > > > > > > > > and I am told that the compression > > ones ( > > > > > > > possibly called > > > > > > > > > > > > > > > > something else in USA?? ) are what > > is normally > > > > > > > used. It > > > > > > > > > > > > > > > > consists of a thick layer of > > cotton wool wadding > > > > > > > over > > > > > > > > > > > > > > > > suitable wound dressings then 2 > > layers of cotten > > > > > > > bandages > > > > > > > > > > > > > > > > and a thick stretchy outer layer, > > overall the > > > > > > > thing looks a > > > > > > > > > > > > > > > > bit like a thin plaster cast but > > is more flexible > > > > > > > than > > > > > > > > > > > > > > > > plaster. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Its called " pathergy " . Google it. They explain it better than I do. BTW, some of these posts are getting extremely long upon the replys. If you notice, I " trimmed " this post. What that means is I went down under the reply message, click and dragged from behind Dianne's name, all the way down, then hit delete. For some of us reading the digest versions, and I think most of us are, you will see what a huge difference this makes. If you don't trim the reply of all the old posts, we sit and scroll to the next new post a very, very, long time. Just thought I would mention it. Its a little thing you can do if you just take a few seconds. It makes a huge difference to use old folks reading the digest. Thanks a million! jeff, pg, cd, imed > > Luke > My understanding is that mannual removal of tissue should not be done. My Dr. says no removal of old skin or no cutting. As I was preparing to HBO and whirlpool closer to home he said DO NOT LET ANYONE TOUCH IT perhaps Jeff know more about this. I have caused trama in the ulcer just by twisting my ankle. > Last Jan. my ulcer was really bad I was put in the hospital and was given IV antiboics that seem to really help. I was given yeast fungal and batercia. > Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Luke, Just between you, me, and the fence post, I would not wear a compression bandage for PG. I can't tell you why, except that from what I see and know about PG, your response makes sense---its not doing anything. So what is the purpose behind the compression bandage? I would give up that hugely expensive bandaging for a little lavage or whirlpool time, I think that would do it much more good. Nothing very scientific here, just MHI. It doesn't sit right with me. jeff, pg, cd, imed > > I have been getting bandaged twice a week now for about 18 months and I am starting to wonder wether its actually effective. The bandage is thick and stops me moving my ankle properly or wearing proper shoes. My question is... Does anyone else have experience of compression bandages being used to treat PG ( and EN where suitable ) and if so, did they help? Of course I know I need bandages of some sort and I am told that the compression ones ( possibly called something else in USA?? ) are what is normally used. It consists of a thick layer of cotton wool wadding over suitable wound dressings then 2 layers of cotten bandages and a thick stretchy outer layer, overall the thing looks a bit like a thin plaster cast but is more flexible than plaster. > > Thanks > > Luke > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Luke, It happens way, WAY too often. A surgeon is the absolutely LAST person to understand PG and to conceptualize " PATHERGY " . He would say, " PATH......WHAT? " I have heard horror story after horror story. This is why I scream ........ PATHERGY! PATHERGY!!! PATHERGY!!!!! at the top of my voice, and from the tallest building to any PG'ers I run into. jeff, pg, cd, imed > > Hi Dianne > > Of course you are right, there should be no removal of skin tissue other than any necrotic tissue that could cause infections. Unfortunately nobody told that to the surgeon that cut a massive hole in my leg!! All that happens if you allow anyone to cut away any healthy tissue, all you do is give the PG more of an area to work on and as I said, the larger the ulcer, the longer it takes to heal. If I knew then what I know noe, I would never have allowed them to cut ANY skin away, never mind such a large area. At the time they were planning to clear the area in order to skin graft over the top of it, of course we all know that skin graft is VERY rarely successful on a PG ulcer and that was true in my case, the graft failed and so I was left with a big hole, lots of pain and a plastic surgeon who refused to talk to me incase I accused him of being responsible for making things worse and not determining an underlying cause. I didnt even hear of PG until after the debridement. I am sure that I am not the only person who was sent to see the wrong specialist at the start. > > I have also had spells in hospital getting IV antibiotics, of course, the bigger the hole in your leg, the more likely you are to get infections. I have had about 4 courses of IV antibiotics ranging from 3 days to 3 weeks in duration. On each occasion the pain had gotten much worse for no obvious reason and it turned out to be an infection, dealing with the infections solved the short term pain increase. > > I hope your ankle and your PG is better. > > Luke this post was trimmed here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Jeff I know the compression maybe doesnt make sense, I cant say that it has worked or not in my case, I dont know if the ulcers would be worse without it or wether the bandage rubbing is causing problems. I intend to change dermatologists very soon and to get a complete new view of the problem. In terms of expense, you forgot again that im in UK, expense isnt a factor since its all free. I havent been offered lavage or whirlpool treatments and in fact the bandages mean I cant soak my leg, the nurses give it a bit of a rinse when they change the bandages but it hasnt had a proper wash in about 2 years!! Your opinion is certainly valid and common sense would tend to agree with you, maybe it depends on the type of ulcers, size, wether they are dry or moist and also on leakage etc. I know that when I started using them, the ulcers were leaking through several layers of normal bandages, after a few weeks of compression the leakage seemed to be less. Point taken on long posts, will edit all future ones, thanks for the reminder. As far as pathergy goes, my horse escaped before the stable door was bolted, I suspect again that anyone who has gone the surgery route was misdiagnosed or assumptions were made before PG was diagnosed. In my case I was unlucky enough to be sent to see a plastic surgeon who was only interested in surgical treatments. In summary, correct diagnosis is the most important thing for everyone, it certainly would have saved me a lot of pain. Luke > > Luke, > > Just between you, me, and the fence post, I would not wear a compression bandage for PG. I can't tell you why, except that from what I see and know about PG, your response makes sense---its not doing anything. So what is the purpose behind the compression bandage? I would give up that hugely expensive bandaging for a little lavage or whirlpool time, I think that would do it much more good. > > Nothing very scientific here, just MHI. It doesn't sit right with me. > > jeff, > pg, > cd, > imed > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Luke Can you do some research into Derm and find one that know lots about PG. I drive 3 hrs to my Dr. because locals don't want to deal with me. My doctor says no removal of skin old or new He never cut off old skin. I agree with Jeff about whirlpool. I did it last year and I am doing it now. I think it is a good way to remove the old lose skin and not have the cutting. My Dr. says its a good way to hold down the infection. Sounds like you need to do lots of searching about different treatments and Dr. then bring them up when you go. I have learn to really check out every drug or treatment and ask lots of questions. Dianne > > Subject: Re: Compression bandages > To: erythema_nodosum_Group > Date: Tuesday, January 26, 2010, 6:24 PM > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > . > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Luke, Ok, so, not sure if you are agreeing or not. But in any case, I never used those. Both of my derms, highly knowledgeable about PG found that the cleaning using lavage and whirlpool was impairative. So that is what i am suggesting, the bandage goes and get some good wound care. Wound care is about number 3 on my list of priorities. The cost, well, let me tell ya, nuttin is free. Since when do you get free lunches in UK and we don't in the US? Just being sarcastic here. Part of the reason your taxes are so much higher than ours. But with over a 1.4 Trillion dollar debt, I am sure we will catch up to ya real fast! The point that I wanted to make is this. I higher cost treatment does not always equate to better care. It can be the worst care as you and I have learned. Remember my list of priorties when it comes to treatments. You will have to advocate for yourself using that list. Not saying you aren't or won't, just saying that this list comes from some extremely knowledgeable and respected sources. Ya, you " could " stumble on some far out or even common treatment that solves everything to your amazement, but that is not current research and practice. You don't know how many times I have seen snake oil ads for " bowel cleansing " for us CD'ers. I know, I prolly will offend someone here. Some people claim it cured them of everything under the sun including worts. More of a skeptic here. BTW, what is that type of bandage used for normally? I know its not PG. I know PG treatments are robbed from other condition treatments, in fact, I think all of them are. jeff, pg, cd, imed > > Hi Jeff > > I know the compression maybe doesnt make sense, I cant say that it has worked or not in my case, I dont know if the ulcers would be worse without it or wether the bandage rubbing is causing problems. I intend to change dermatologists very soon and to get a complete new view of the problem. > In terms of expense, you forgot again that im in UK, expense isnt a factor since its all free. I havent been offered lavage or whirlpool treatments and in fact the bandages mean I cant soak my leg, the nurses give it a bit of a rinse when they change the bandages but it hasnt had a proper wash in about 2 years!! > Your opinion is certainly valid and common sense would tend to agree with you, maybe it depends on the type of ulcers, size, wether they are dry or moist and also on leakage etc. I know that when I started using them, the ulcers were leaking through several layers of normal bandages, after a few weeks of compression the leakage seemed to be less. > > Point taken on long posts, will edit all future ones, thanks for the reminder. > > As far as pathergy goes, my horse escaped before the stable door was bolted, I suspect again that anyone who has gone the surgery route was misdiagnosed or assumptions were made before PG was diagnosed. In my case I was unlucky enough to be sent to see a plastic surgeon who was only interested in surgical treatments. In summary, correct diagnosis is the most important thing for everyone, it certainly would have saved me a lot of pain. > > Luke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 I'm sorry Dianne, but I have to ask you where you live. Are you in the UK also? jeff, pg, cd, imed > > Luke > Can you do some research into Derm and find one that know lots about PG. I drive 3 hrs to my Dr. because locals don't want to deal with me. My doctor says no removal of skin old or new He never cut off old skin. I agree with Jeff about whirlpool. I did it last year and I am doing it now. I think it is a good way to remove the old lose skin and not have the cutting. My Dr. says its a good way to hold down the infection. Sounds like you need to do lots of searching about different treatments and Dr. then bring them up when you go. I have learn to really check out every drug or treatment and ask lots of questions. > Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Luke, How often do you get your dressings changed? I started having it changed every other day but then the doctor told me that I had to do it every day. You're right -- I usually took pain pills before each dressing change but that didn't really help all that much. I used to dread going to the clinic and everytime I got done, I'd spend the rest of the day in bed, recuperating from the painful procedure. The Aqua-Cel really helped draw out all the slough from my ulcers. I don't know if they use it in your country -- but it really helped me. You're right -- I guess some meds work for others but not for everyone. I took a bunch of different drugs before Colchicine -- some gave me additional trouble -- so it's just really a matter of finding the right one for you. Just hang in there -- and I'll keep you updated about my own experiences. I know I gleaned a lot of knowledge just from reading emails from other group members. Take care, Flo To: erythema_nodosum_Group Sent: Tue, January 26, 2010 3:47:50 PMSubject: Re: Compression bandages Hi FloThankyou for the details, since joining this group I am learning a lot about other alternative treatments and ones that have been successful. Cochicine seems to have been the perfect treatment for you, I am also starting to see similarities in peoples experiences in that the larger the ulcers, the slower the healing, I suppose thats common sense but the doctors done seem to have picked up on it. My largest ulcer is currently approx 6" x 5" and has similar oozing to what you describe, I have found that some of it is from the wound and some is 'slough' which is a mixture of fluids and of dead skin. I have found that a mixture of oral morphine and liberal doses of Nitrous Oxide are very useful when undergoing debridements and dressing changes as well. It took me a long time to ask for the nitrous and I suffered rather a lot before I realised that it was better to tell someone about the pain rather than appear to be the macho man. It is difficult for other people to understand the pain involved and the sensitive nature of the skin around the ulcers too. Unfortunately I am cursed with hairy legs and so the nurses tend to assume that any pain I am feeling is 'hairs being pulled' rather than a hypersensitivity. It sounds like the compression bandages were deinately helpful in your case, thankyou for the information.Luke> > > > > > > > > > > > > > > From: lukeukluke <lukeluke999@ ...>> > > > > > > > Subject: [erythema_nodosum_ Group] Compression> > > bandages> > > > > > > > To: erythema_nodosum_> > > Group@yahoogroup s.com> > > > > > > > Date: Monday, January 25, 2010, 5:03 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been getting bandaged twice a week> > > now for> > > > > > > > about 18 months and I am starting to wonder> > > wether its> > > > > > > > actually effective. The bandage is thick and> > > stops me moving> > > > > > > > my ankle properly or wearing proper shoes. My> > > question is...> > > > > > > > Does anyone else have experience of compression> > > bandages> > > > > > > > being used to treat PG ( and EN where suitable )> > > and if so,> > > > > > > > did they help? Of course I know I need bandages> > > of some sort> > > > > > > > and I am told that the compression ones (> > > possibly called> > > > > > > > something else in USA?? ) are what is normally> > > used. It> > > > > > > > consists of a thick layer of cotton wool wadding> > > over> > > > > > > > suitable wound dressings then 2 layers of cotten> > > bandages> > > > > > > > and a thick stretchy outer layer, overall the> > > thing looks a> > > > > > > > bit like a thin plaster cast but is more flexible> > > than> > > > > > > > plaster.> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Luke> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hi Jeff I am basically agreeing with your comment that compression bandages dont make sense, but I guess what I am saying is that just because it doesnt make sense doesnt mean it doesnt work!! I would like to know more about the whirlpool treatment, is it literally a whirlpool as in at a swimming pool? Sarcasm works quite well and I know that free healthcare is a big political issue in USA at the moment so I dont want to cause any big arguements. I just wanted to say that tax isnt particularly high, unless you earn a lot, income tax is typically about 20% but ranges from 10% to 40%. However the important difference is that even though I am currently out of work, not paying tax and yet I still have free healthcare. From comments you have made, I know that the cost of healthcare and insurance is a big issue to you, surely you can see that free healthcare for those who are unable to pay for it is a good thing? The cost of the treatment doesnt necessarily guarantee success but at least I know that if a $150,000 treatment fails, I havent lost $150,000. Speaking of snake oil, I discovered a product called 'Bio Oil' which has been a success for me removing small PG scars on my thigh, they havent gone completely but I had 2 of them, used it on 1 and it is much feinter than the other. Dont know if its available in USA, but im just passing on anotheer product that worked for me. Luke > > Luke, > > Ok, so, not sure if you are agreeing or not. But in any case, I never used those. Both of my derms, highly knowledgeable about PG found that the cleaning using lavage and whirlpool was impairative. So that is what i am suggesting, the bandage goes and get some good wound care. Wound care is about number 3 on my list of priorities. > > The cost, well, let me tell ya, nuttin is free. Since when do you get free lunches in UK and we don't in the US? Just being sarcastic here. Part of the reason your taxes are so much higher than ours. But with over a 1.4 Trillion dollar debt, I am sure we will catch up to ya real fast! The point that I wanted to make is this. I higher cost treatment does not always equate to better care. It can be the worst care as you and I have learned. Remember my list of priorties when it comes to treatments. You will have to advocate for yourself using that list. Not saying you aren't or won't, just saying that this list comes from some extremely knowledgeable and respected sources. Ya, you " could " stumble on some far out or even common treatment that solves everything to your amazement, but that is not current research and practice. You don't know how many times I have seen snake oil ads for " bowel cleansing " for us CD'ers. I know, I prolly will offend someone here. Some people claim it cured them of everything under the sun including worts. More of a skeptic here. > > BTW, what is that type of bandage used for normally? I know its not PG. I know PG treatments are robbed from other condition treatments, in fact, I think all of them are. > > jeff, > pg, > cd, > imed > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hi Flo I usually get them changed twice a week, sometimes more if I have a consultants visit ( as I do in about 1 hour ). The 2 schools of thought are that if you change it more often you always have a clean bandage on and therefore are less likely to get infections and the wound stays cleaner. However, it causes more trauma to the would and also more pain to the patient. By having it done only twice a week, it causes less trauma to the wound and means that fragile skin is given a chance to heal. I have actually heard disagreements between dermatology nurses about wether its best to do it more often or less, they cant agree amongst themselves and for that reason I chose the less painful option. As I say, the Nitrous Oxide is VERY useful during dressing changes, the effects fade rather quickly and if you are a little childish ( as I can be ) it can even be a little bit of fun if you 'accidentally' take too much!!! Lets face it, us PG people need to have a laugh occasionally!!! I have had Aqua Cell dressings before and agree that they are good on the slough, and dont sting as much as honey dressings. I found the honey was better on deep dry necrotic slough though. Thankyou for keeping me updated, if we all keep each other updated and informed we are fulfilling the purpose of the group. Thanks Luke > > Hi Luke, > > How often do you get your dressings changed? I started having it changed every other day but then the doctor told me that I had to do it every day. You're right -- I usually took pain pills before each dressing change but that didn't really help all that much. I used to dread going to the clinic and everytime I got done, I'd spend the rest of the day in bed, recuperating from the painful procedure. The Aqua-Cel really helped draw out all the slough from my ulcers. I don't know if they use it in your country -- but it really helped me. > > You're right -- I guess some meds work for others but not for everyone. I took a bunch of different drugs before Colchicine -- some gave me additional trouble -- so it's just really a matter of finding the right one for you. > > Just hang in there -- and I'll keep you updated about my own experiences. I know I gleaned a lot of knowledge just from reading emails from other group members. > > Take care, > > Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Luke, Have you talked to a PT or other specialists regarding changing dressings? Mine was getting changed no less than twice a day. I know I was not wearing what you are, but I can't believe anyone associated with wound care would be allowing a dressing to go as long as 3 days on PG. Especially the more active it is, the more often it needs changing. I have to tell ya, that does not set right with me at all. That sounds like a highly questionable practice. Whirl pool. I have seen 2 versions. Full bath (like a bath tub) and a tank you can stick your feet/leg into. I used the latter. They used a disinfecting solution and then set it to run about 20 minutes. After which, they did some very light wiping and then redressing. My PT used a dressing made by & called FIBRACOL Plus. It is a collagen wound dressing with alginate. The dressing appears as a very light " foam " material. It is cut to fit the size of the wound. It kind of absorbs into the wound over time. So the wound care dressing treatment goes like this: 1. Whirlpool 2. Dry, light wipe, sometimes carefully pick off loose nacrotic tissue. 3. Coat with Protopic ointment. 4. Cover with collagen dressing 5. Cover with gauze. 6. Wrap with gauze wrap. Very little pain. I did this every other day. Other days I changed my own dressings at least twice a day and also used an astrengent solution you can get over the counter. Same stuff used for removing bee stings. It helps draw out the nacrotic tissue. jeff, pg, cd, imed > > Hi Flo > > I usually get them changed twice a week, sometimes more if I have a consultants visit ( as I do in about 1 hour ). The 2 schools of thought are that if you change it more often you always have a clean bandage on and therefore are less likely to get infections and the wound stays cleaner. However, it causes more trauma to the would and also more pain to the patient. By having it done only twice a week, it causes less trauma to the wound and means that fragile skin is given a chance to heal. I have actually heard disagreements between dermatology nurses about wether its best to do it more often or less, they cant agree amongst themselves and for that reason I chose the less painful option. As I say, the Nitrous Oxide is VERY useful during dressing changes, the effects fade rather quickly and if you are a little childish ( as I can be ) it can even be a little bit of fun if you 'accidentally' take too much!!! Lets face it, us PG people need to have a laugh occasionally!!! > I have had Aqua Cell dressings before and agree that they are good on the slough, and dont sting as much as honey dressings. I found the honey was better on deep dry necrotic slough though. > Thankyou for keeping me updated, if we all keep each other updated and informed we are fulfilling the purpose of the group. > > Thanks > > Luke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hi Jeff I understand what you are saying, changing dressings twice a day seems excessive to me and if the tissue sticks to the dresing I could see that it might cause damage to any healing. After having twice weekly dressing changes for so long, they dont seem unusual to me at all, I wouldnt like to go through the pain of a dressing change more often unless I really had to. Was your ulcer particularly 'leaky'? Did it stick to the dressings at all? Did you find the changes particularly painful. Speaking of pain, I am wondering if your PG affected the nerves in your leg and wether you have lost any sensation on your healed PG area? I have used protopic in the past as an anti-inflamatory applied to the wound dressings. Note, I usually ask for the ointments to be spread on the dressings rather than on the wound, causesw less pain that way. I spoke to the consultant today and am being referred to other experts. I will wait until I see him/her and then I will be asking abotu dressings and cleanings/whirlpool etc. I will keep you updated as soon as I hear anything. Luke > > Luke, > > Have you talked to a PT or other specialists regarding changing dressings? Mine was getting changed no less than twice a day. I know I was not wearing what you are, but I can't believe anyone associated with wound care would be allowing a dressing to go as long as 3 days on PG. Especially the more active it is, the more often it needs changing. I have to tell ya, that does not set right with me at all. That sounds like a highly questionable practice. > > Whirl pool. I have seen 2 versions. Full bath (like a bath tub) and a tank you can stick your feet/leg into. I used the latter. They used a disinfecting solution and then set it to run about 20 minutes. After which, they did some very light wiping and then redressing. My PT used a dressing made by & called FIBRACOL Plus. It is a collagen wound dressing with alginate. The dressing appears as a very light " foam " material. It is cut to fit the size of the wound. It kind of absorbs into the wound over time. So the wound care dressing treatment goes like this: > > 1. Whirlpool > 2. Dry, light wipe, sometimes carefully pick off loose nacrotic tissue. > 3. Coat with Protopic ointment. > 4. Cover with collagen dressing > 5. Cover with gauze. > 6. Wrap with gauze wrap. > > Very little pain. I did this every other day. Other days I changed my own dressings at least twice a day and also used an astrengent solution you can get over the counter. Same stuff used for removing bee stings. It helps draw out the nacrotic tissue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hey Luke, Not if they/you coat the wound (or the inside of the dressing, I did that also so as not to touch the wound) with protopic. It is greasy so not much of a sticky issue. While ulcerating, it was particularily leaky, therefore more changes. After the ulcerating stopped, we still did changes twice daily. But again, no sticking really and soaking in astrengent was good for it when whirlpool was not available. Very little to no pain. I have no feeling in the healed area. On occasion I get " ghost pains " . The nerves were destroyed. Blood veins and flesh was destroyed, so the area is low to the adjacent areas of my leg. I am pretty passionate about wound care and dressings, etc. (as I am sure you can tell), lol. I feel it is one of the important keys to getting PG under control. If what you are doing isn't improving matters, consider other options or varients to what you are doing. Basic wound care, even do an internet hit. What is the basic premise underwhich any wound dressing change frequency is done? I obviously have some personal bias here to. Sorry for that. I truly believe more frequent changes are in your best interests. I am suggesting to question it. As time went on and things deteriorated, I was much more aggessive and challenged/asked why, why, why on many issues. Probably the only reason its under control today. You have to push, push, and then push even harder. I know you have limits with your health care system, but I see you now have options to get other opinions. That is wonderful!!!!!! Yeah!!!!!!!!! Great news. Ok Luke, I am in your court. I come on strong sometimes but it is only because of my passionate feelings about this subject. We are all so much subjected to pure BS from docs and the medical establishment. I found ya have to be one step ahead of them. jeff, pg, cd, imed > > Hi Jeff > > I understand what you are saying, changing dressings twice a day seems excessive to me and if the tissue sticks to the dresing I could see that it might cause damage to any healing. After having twice weekly dressing changes for so long, they dont seem unusual to me at all, I wouldnt like to go through the pain of a dressing change more often unless I really had to. > > Was your ulcer particularly 'leaky'? Did it stick to the dressings at all? Did you find the changes particularly painful. > > Speaking of pain, I am wondering if your PG affected the nerves in your leg and wether you have lost any sensation on your healed PG area? > > I have used protopic in the past as an anti-inflamatory applied to the wound dressings. Note, I usually ask for the ointments to be spread on the dressings rather than on the wound, causesw less pain that way. > > I spoke to the consultant today and am being referred to other experts. I will wait until I see him/her and then I will be asking abotu dressings and cleanings/whirlpool etc. I will keep you updated as soon as I hear anything. > > Luke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 no Iowa from hrs from Mayo Clinic in Minnesta > > Subject: Re: Compression bandages > To: erythema_nodosum_Group > Date: Tuesday, January 26, 2010, 10:49 PM > > > > > > > > > > > > > > > > Â > > > > > > > > > > I'm sorry Dianne, but I have to ask you where > you live. Are you in the UK also? > > > > jeff, > > pg, > > cd, > > imed > > > > > > > > > > Luke > > > Can you do some research into Derm and find one that > know lots about PG. I drive 3 hrs to my Dr. because locals > don't want to deal with me. My doctor says no removal of > skin old or new He never cut off old skin. I agree with Jeff > about whirlpool. I did it last year and I am doing it now. I > think it is a good way to remove the old lose skin and not > have the cutting. My Dr. says its a good way to hold down > the infection. Sounds like you need to do lots of searching > about different treatments and Dr. then bring them up when > you go. I have learn to really check out every drug or > treatment and ask lots of questions. > > > Dianne > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Luke I change my dressing twice a day too. I do wet dressings with a dry over the top. Wet is Sponge gauge with asectic acid and distilled water 1 oz of white vinegar to 32 oz of water. When the dressing is dry for several hours it becomes more painful. I pour solution over dry bandage before removeing. Pour and remove slowly keep pouring until the bandage come off with very little or no force. About 10 minutes after putting a new bandage on it always feels bettter. If it is breaking out or really raw I have to lower the vinegar amount a little. I am do the whirlpool (leg in the water). They put asetic in water they can also put salt in which is like saltine solutuion (that helps the pain). The first week it hurt but now I am going on the third week almost no pain and the ulcer is really healing Almost no leakage and the ulcer has raised up at least 2 skin layers. The yellow drainage stuff is all gone. Dianne > > Subject: Re: Compression bandages > To: erythema_nodosum_Group > Date: Wednesday, January 27, 2010, 10:27 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hey Luke, > > > > Not if they/you coat the wound (or the inside of the > dressing, I did that also so as not to touch the wound) with > protopic. It is greasy so not much of a sticky issue. > While ulcerating, it was particularily leaky, therefore more > changes. After the ulcerating stopped, we still did changes > twice daily. But again, no sticking really and soaking in > astrengent was good for it when whirlpool was not available. > Very little to no pain. > > > > I have no feeling in the healed area. On occasion I get > " ghost pains " . The nerves were destroyed. Blood > veins and flesh was destroyed, so the area is low to the > adjacent areas of my leg. > > > > I am pretty passionate about wound care and dressings, etc. > (as I am sure you can tell), lol. I feel it is one of the > important keys to getting PG under control. If what you are > doing isn't improving matters, consider other options or > varients to what you are doing. Basic wound care, even do > an internet hit. What is the basic premise underwhich any > wound dressing change frequency is done? I obviously have > some personal bias here to. Sorry for that. I truly > believe more frequent changes are in your best interests. I > am suggesting to question it. As time went on and things > deteriorated, I was much more aggessive and challenged/asked > why, why, why on many issues. Probably the only reason its > under control today. You have to push, push, and then push > even harder. I know you have limits with your health care > system, but I see you now have options to get other > opinions. That is wonderful!!! !!! Yeah!!!!!!!! ! Great > news. > > > > Ok Luke, I am in your court. I come on strong sometimes > but it is only because of my passionate feelings about this > subject. We are all so much subjected to pure BS from docs > and the medical establishment. I found ya have to be one > step ahead of them. > > > > jeff, > > pg, > > cd, > > imed > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > . > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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