Treatment

I've started taking Prednisone, six pills a day. It has a big list of possible side effects. So far I haven't had anything as far as a side effect except maybe a little light headed. I don't plan going anywhere so it shouldn't be an issue.

routine

When I first developed this Pyoderma I experienced a lot of bleeding. As the weeks have dragged on and my lesion has expanded the bleeding has virtually disappeared. I am of course happy about this. Not bleeding is a good thing, I would say. But what has also occurred is the progression of the pyoderma's sheeting or fluid production. I used to change my dressing every six hours or so, but due to so much moisture/wetness being produced, I can't put it off for that long.

My doctor said it was 'edema fluid', whatever the heck that is.. All I know is that because of this 'fluid', I am forced to change my bandages about every three hours.

Due to this fluid situation, I find myself using 'Curity cover sponges' by Kendall (Tyco healthcare). They are super absorbent yet won't stick to my pyoderma. And they are pretty cheap too.

exciting tape..!

Although I am not allergic to latex, I seem to have a reaction to adhesives used on some tapes.

When I had a needle in my hand during my colonoscopy, it was kept secure with a few strips of tape. It took a day or two to get the sticky residue off the back of my hand. And It began to itch, really itch. I scratched my hand for days, making my skin red and puffy in the process.

This 'micropore' tape works great for me. It keeps bandages secure yet its easy to remove. The hair on my leg isn't ganked during tape removal which is a plus.

..custom kitchen, deliveries..

The costs associated with Pyoderma can add up really fast. I live in NYC and the items that I need can't be purchased at Duane Reade or Walgreens. I find myself going to a medical supply store to get the things that I need. The type, size and quantity of what ever I need can usually be found here.

To save money I purchase most of my supplies from online merchants. The price differences can be unbelievable, even more so since I'm forced to pay 'NYC prices'. For example, the Telfa pads that use are about $24 a box at the local spot but less than $13 online. I figure that I go through $35 worth of supplies a week. This is represented by gauze, tapes, wraps, nonstick pads, saline wash and etc. This of course doesn't include any medications that I may be taking.

At the docs

Sitting on the table at my doctor's office. I was expecting to get an injection of something but didn't get anything. The doc is going to put me on a regimen of steroids. I hope they work out..

Ouch

This Pyoderma ulcer on my leg doesn't seem to want to quit growing. I am supposed to start taking some type of steroids orally to help fight this lesion, but I have another test to complete and they don't want me taking anything until after the next exam is completed.

I remember when the bandages covered the entire ulcer but it has continued to expand. The most effective way to measure the extent of growth or expansion is to compare pictures and to note the increasing amounts of gauze or dressings required to dress the area.

Odd side effect

The mixture that I had to consume to clean out my colon prior to my colonoscopy had an effect on the edema in my leg/foot. I was surprised by the edema loss enough to take a picture of it.

I have no idea why this happened but if it happened to me I'm sure its a common occurrence..

Afterwards..

So I had my colonoscopy and oddly enough everything was 'normal'. I was expecting to have Colitis or Crohn's, but in fact had nothing.

The Anesthesiologist hooked me up to a heart monitor and put a needle in my hand. She said that I wasn't going to be 'put out' but would be sleepy during the procedure. It seems when the anesthesiologist said 'sleepy' what she meant was knocked out because I don't remember a thing until i was asked to 'wake up'.

I felt groggy for the next few hours. I went home drank some water and Gatorade and fell asleep for about nine hours.

The next morning I found two sticky pads on my chest. These things were used to hook me up to the heart monitor the day before. One was actually difficult to remove pulling some of my chest hairs out in the process. The only pain I felt throughout the whole procedure..

Getting ready

Before one gets a colonoscopy it takes a day to prepare the system for examination. This means eating no foods all day except drinks, soda, coffee, tea until midnight. After midnight nothing can be consumed not even water.

In addition to this liquid diet I had to drink two liters of a 'cleansing drink'. It basically gives you diarrhea for the next twelve hours. And be prepared because this stuff works. It wont win any taste awards but its weak lemon-lime taste wasn't so awful.

Do's and dont's..

Pyoderma is often associated with Inflammatory bowel disease (IBD) which is generally seperated between the severe type, Crohn's and not as severe, ulcerative colitis. Because of this I'm having a colonoscopy next week.

The picture is of a list of all the things i can consume and the things i can't the day prior to examination day. I had a laugh because the secretary took a few minutes underlining everything and adding notes. I guess she thought I looked like a retard or something.

I also have to drink some type of mixture the day prior in an effort to clean the colon as much as possible. He apologized for having me drink this stuff because its supposed taste awful.

My strange cat

He wont eat fish, shrimp, hamburger, chicken or any of the other 'break offs' I have offered him over the years.

If a taco chip is offered, he munches away..

Cool thingy

I went to the 'imaging center' to get some X rays of my bones and I noticed this little robot thing sitting behind me. When I put my hand under the spout, it squirted out some hand sanitizer. It had a pleasant unique spearmint scent.

Since H1N1 and various flu varieties are floating around, I find myself too often washing my hands. And of course since I have Pyoderma, a constant open wound, a perfect entrance for any and all airborne illnesses, I must be vigilant with my hygiene.

Its called a 'Germstar' sanitizer. I found a merchant online that sells a 'starter kit' for about $130. It may seem like a lot to pay for a hand sanitizer but I thought it was that cool.

That ain't juice

My doc wanted me to complete another urine test. Instead of just filling a little cup, I was instructed to collect my urine over a 24hr period. This requires me to keep my collection in the refrigerator as I collect it and deliver it to the testing center.

One that healed up

This picture is shows a lot of details. Two of the arrows are pointing to the puffy bands that surround my Pyoderma. These bands are the source of most of the pain. Between these two rings there appears to be a gap of healthy unaffected skin. I have no idea why or how this healthy skin remains but it would probably help answer questions about Pyoderma's existence.

The small dark spot with an arrow is actually an original Pyoderma boil that never really grew. It was there for about two weeks and then it just started to heal on its own. I would occasionally put Neosporin on it but that was it.

As of now the black spot is gone. I just have a small scar. Why did this Pyoderma boil heal while the other two continued to grow?

Maintenance

I go through a lot of tape and bandages on a daily basis just trying to keep my Pyoderma clean and dry. Its an uphill battle. My Pyoderma is constantly weeping or seeping fluid, interstitial fluid. I had first been using a medical tape that appeared like thick scotch tape. After a few uses it began to peel away bits of my skin as well. I switched to paper and cloth (Durapore by 3M) tape and these worked well except for the occasional yanked hair or two.

The roll above is a product call Coban tape. It doesn't stick to anything except itself. It can be reused as long as it is clean and it usually does a good job staying in place. It will even stay secure while in the shower. Its kinda pricey, about $5 a roll but again finding it for sale online is easy and more cheap, about$3 each.

I seem to prefer using the Coban tape for my upper calf and Durapore cloth tape near my ankle.

Hippocrates

After all of the tests have been done my situation has been narrowed down to two possible situations which are common for people experiencing Pyoderma, Inflammatory Bowel Disease (IBD) or Leukemia. I have been flagged for some above average items that are common but could point to Leukemia but my money would be on the IBD. I used to have the symptoms about two years ago. I thought I was becoming lactose intolerant. I have a father and niece that are both very intolerant to dairy. I chalked it up as one of those things due to getting older. I don't have any of the symptoms of IBD currently but I was told that I didn't have to prior to developing Pyoderma.

If one has IBD or Crohn's disease, Pyoderma development is a possibility. From the readings I have done on Pyoderma it appears that persons that suffer from Crohn's develop the most stubborn or recalcitrant Pyoderma.

Ring of fire

This picture illustrates the thick band or ring that forms around Pyoderma. Strips or strings of dead tissue can be seen around the edges. I have never intentionally removed dead tissue. I usually leave it alone and it just comes off when bandages are removed or maybe while in the shower.

These swollen rings will exist for about a week then they disappear. The center area of the wound doesn't really change. Most of the changes happen on the outer edges.

It really hurts too

These Pictures were taken at the same time. They illustrate the slow process of gently removing absorption pads. I use these when I go outdoors. Its common that the pads are bloodied after wearing them for about 7+ hours. My wound may only bleed in one or two areas but because the pads are absorbent they will soak up the blood although slight for hours. After a few hours of this it may appear that the entire wound is bleeding but as the right picture illustrates my wound has two small spots of bleeding.

The puffiness around the edges are well illustrated and are actually the Pyoderma expanding. These puffy ridges produce extreme constant pain. The lower center doesn't produce the constant pain of the ridges but at times I feel a sharp stinging. Sharp enough to make me twitch out of a chair. These wide puffy ridges will last about a week and then they will settle down, the puffiness and a lot of the pain disappears. The Pyoderma will remain unchanged for about five days and then this puffy ridge will reappear in another region of the wound and it expands some more..

Edema

As the picture illustrates I have edema in my left leg. It only effects up to but below my knee. It doesn't especially hurt to have edema but it can be a pain dealing with having it. I wear a size 12.5 shoe and many of my loafers I can't wear because my left foot won't fit. I have a pair of Trask loafers, super comfy and well made but my left food bulges out of it. So, I find myself wearing sandals most of the time.

Also because of the edema I am forced to sleep sitting up. If I sleep laying down, like one usually does, when I get out of bed my leg begins to burn. It feels like my leg is on fire. It takes about ten minutes for this pain to subside but it is so intense that I choose to sleep sitting up or sleep with my left foot on the floor. I have purchased a 'bed wedge', a foam cushion, that would allow me to sleep sitting up. I haven't received it yet so I can't supply any details.

Mystery

At times and for reasons I don't understand my Pyoderma will bleed, from around the edges. It doesn't feel anymore painful than usual but it just bleeds. This picture was taken after a nap.

Also as one can see in the picture its important to have a good work space where the bandages can be removed and new ones applied. For me this means my living room. My bed is too far off the floor and my bathroom is too small. I of course use a towel to protect my rugs from any spills or stains. Blood in a carpet/rug can be impossible to clean out.

Tools 3

As with any wound or sore its always important to keep it and the general area clean. Its actually important NOT to perform any type of debridement of one's Pyoderma. This may introduce additional trauma to the area promoting the wound's growth. Debridement is the removal of dead or infected tissue involved in an injury or wound, like a serious burn. In an gentle effort to keep my PG clean and to help remove any stubborn bandages I use a solution of water and hydrogen peroxide (3% solution). A ratio of 3w/1hp should work fine. I use the straw as a makeshift tincture to apply the solution as opposed to pouring it on my leg and soaking the floor.

If I have bandages that are hard to remove I always will use hydrogen peroxide to help me out. It not only dissolves the 'crusty' glue that seems to occur after wearing bandages for a few hours but it also disinfects with little or no pain. This 'no pain' part is a big plus because almost everything one does while suffering from Pyoderma is painful. After my bandage(s) are soaked with peroxide for a few minutes, I begin gently removing them. It works like magic! I'm not pulling any tissue off and it is almost painless. Pain management is a BIG part of dealing with Pyoderma.

In an effort to describe it to friends I suggest its similar to a pan of hot oil poured onto one's skin and then pulling the jumbo sized blister that would be produced. And then spray the wound with salt water, wait a moment then repeat..

Tools 2

This is a box of Telfas. They are a special type of bandage that will not stick to one's wounds. If a wound is dry its safe to wear a gauze type dressing but if one has a wound that is wet or bloody these things work great. Pyoderma can generate some really terrible sores that are not only painful but require creative dressings. They come in a variety of sizes and are not expensive. This entire box cost about $20.

I only wear these when I'm hanging around at home. Because they don't stick, they do a poor job of staying secure on my sore. I used to use telfas while outside but after a few hours of use they would start sliding down my leg. Not a good situation. Since my movement at home is minimal, Telfa is a pain free choice to wear around the house.

While using Telfas, I cover them with a few pieces of gauze and then I cover the entire area with a few pieces of finishing gauze and then tape the whole thing down.

Tools

This an Ace bandage. It will allow one to keep gauze and bandages in place while walking around. Ace is actually a brand name but there are many brands available and they are all similar. If you happen to be allergic to latex they make non-latex wraps as well. I always wear one when I go outdoors. It does a great job staying in place and keeping my wound secure and covered. I don't wear these while indoors because they don't work to well with the Telfas, the non sticking bandages made by Tyco.

Since these are made of fabric they can be reused, just remember to wash them. They dry out hanging from my shower curtain rod after about four hours. I guess one could put them into a washing machine and dryer but I have never done it.

They shouldn't cost that much. I bought a few from a supply store in NYC and they cost $7 each. I found a merchant online that sells the exact same wrap for $0.89 ! I bought two boxes (10 per a box) so that I know I'll always have one on hand.

Lennox Hill Hospital

I went to the ER at Lenox Hill Hospital. Its on the corner of 77th and Lexington Ave in New York City for those unfamiliar with the name.

When I arrived at the ER I was asked the usual questions, put into a bed and had some blood taken for analysis. I had told the admitting nurse the names of my dermatologist and my general physician, since I had just undergone a complete physical about two weeks prior. It would seem the usual course of business in an emergency room is admitting someone with little or no prior medical care and a physical condition that is a complete unknown. I was in an rare position it would seem when i was explaining that I had completed a physical less than three weeks prior.

I have never been admitted into an ER before. This was a first for me. About ten minutes after I was laying on a bed, the ER doc came to see me. I told he what had happened and that he should call my dermatologist before anything was done. He seemed to understand this and excused himself so that he could phone my doc.

It was about this time that nurse showed up with a clear bag of fluid and the intent of hooking it up to my arm. This fluid was some type of antibiotic and although large it only took about 30 minutes for the entire bag to be emptied. The ER doc came by and told me that I had suffered from Cellulitis, a bacterial infection of the skin. It would seem that my Pyoderma was suffering from a case of Cellulitis as well. This infection had progressed enough to risk the integrity of blood vessels in my shin. Not that deep actually..

While I was laying down i was talking to this old timer next to me that was admitted for 'bleeding'. He said that he was going to the bathroom the night before and the bowl was full of blood. Yikes! He seemed about 75+ years old and had grown up in The Upper East Side. He was still married, his wife was a few years older and had been fighting cancer for the last few years. He explained that he had been taking care of her and now they had real problems because he was in no condition to continue her care. He seemed upbeat about his situation but was still obviously worried.

After laying on this super comfortable ER bed, watching the circus of new ER admissions, I noticed my primary doc walking around the admissions desk. I was surprised to see her and even more surprised when i learned that she was there to check up on my situation. It would seem that the ER doc had called her and her office being only a few blocks away she showed up.

She came over to my spot and told me that the blood work Lenox Hill had just done was normal and that I would get a prescription for additional antibiotics for me to take in the days ahead. And that After my paperwork was processed, I could go home. What a beautiful phrase..go home.

On a funny strange note. While my doc was talking to me the old guy in the next bed asked me who this 'beautiful woman was'. I was like 'uh, this is my doctor..' He then told her how beautiful he thought she was and she just laughed and thanked him for the compliment. It wasn't uncomfortable but it was a tad strange. After she walked back to the admissions area to find my exit papers this old guy was still talking about how 'gorgeous' my doc was. I was like 'jeez, give it a rest'. I guess when you are that old seeing a female MD is a rare thing.

I was so worried about this vein bleeding I was in 'freak out' mode. The docs didn't seem worried about this but were concerned about the Cellulitis. Prior to being allowed to leave one of the nurses, I can't remember his name, an Asian guy, took all my dressing off and redressed the leg. I was worried that I would start bleeding again but nothing happened. He did a fantastic job with the dressings and an Ace bandage. I have never used an Ace bandage before. It works great when you learn how to properly wrap things up. Also I was told about the magic of hydrogen peroxide to remove bloodied bandages safely and with little or no pain. With my leg wrapped up like a cocoon I said my goodbyes and went home..

My complication has had a little complication

I was running some errands and while I was a half a block from my building I noticed a squishing sound in my left shoe. I didn't remember stepping into anything so when I looked down I noticed that my bandage wrapped around my leg which is usually white was in fact now red, deep red. And my shoe was full of blood. I could see the blood trails running down my ankle and disappearing into my shoe.

When I got into my apartment i went into the bathroom to inspect my leg. The bandages, so soaked with blood, just slid off my leg. When this happened blood actually sprayed out of my shin like a constant squirt. It sprayed all over the walls, the floor and also into the bathtub, only stopping after I held a washcloth to the area, applying pressure. I of course not being a doctor or even an Eagle Scout for that matter did what I would normally do, freak out in panic.

To see my blood spray out like that really freaked me out. I was afraid I would pass out because of all of the blood lost. The carpet in my hallway was ruined and the bathmat was soaked. The pic shows on the right side that my bathmat is glistening. For the record bathmats do not glisten. It was soaked through to the floor.

The horror..

I have received the biopsy information and everything came back negative. No skin cancer, no fungus, nor bacterial. Its autoimmune. My immune system seems to be attacking myself.

So it seems I have typical garden variety Pyoderma Gangrenosum (PG). PG doesn't just come about on its own. It is has an underlying cause. Think of PG being smoke and this unknown underlying cause as the fire. Treat the underlying cause and everything else will take heal as well. The next step is to find this cause.

And that's not all..

Its starting to look nasty. One can see red pockmarks on the left side of my wound. These are a result of me scratching the skin. It also was due to some of the medical tape I was using. When it was pulled from my skin, it actually took little strips off as well! Ok, so no more plastic medical tape in the house! I then switched to paper or cloth tapes. These worked fine.

About this time I had already had a steroid injection into the wound by my dermatologist. Often Pyoderma will respond to steroids by shrinking and healing. I would get two steroid shots over a two week period with no noticeable results.

Also about this time I began to suffer from stinging pain while in the shower. The mere spray of some water would be enough for me to jump. In an effort to keep the area clean I would let my tub head run cool water down my leg and over my wound. It was producing a yellow fluid that would soak my dressings in about two hours. I'm not sure if its edema fluid, plasma or whatever. I refuse to have my sore covered in this stuff so I would run some water over it, cool or cold water. For some reason warm water made the sore hurt.

Still here..

The picture illustrates that the wound has gotten larger and it has those thick blue almost purple bands surrounding the entire sore. It also has a soft pinkish hue that surrounds the area. This redness is more than the usual erythema but actually Cellulitis. I was taking antibiotics to help reduce this redness but It would turn out that either the meds weren't working or that I wasn't taking enough.

Recalcitrant fugger

It used to be two separate sores but as one can see they have joined forces. The dark bump near the top is the location of my biopsy a few days earlier. My leg may seem really fat or puffy because it is. I seem to have developed edema as well. My other leg is normal.

At this time when I take my usual shower I drizzle a little Hibiclens on the wound and let the shower wash it off. Hibiclens is great antibacterial soap that are used by all hospitals and physicians. It can be a tad expensive and it can stain towels or clothing but it is well worth it. It is important to note that at no time should anyone with Pyoderma Gangrenosum undertake a debridement of the wound. To do so may excite the area and cause the lesion to grow even faster. After my biopsy, the dermatologist said that the area may speed up with its growth because of the trauma caused by the biopsy. It did effect the wound but not the area of the biopsy. Strange..

My Second Doc

My dermatologist told me to have a physical examination so he referred me to an internal medicine physician. I had actually came across my documentation from my last complete examination. It had been three years exactly, to the day. I gave these to the doc so that she might have some type of reference. I had no use for them. I was asked a bunch of questions about my past, lifestyle questions, family histories and the like.

I had some blood drawn, had a chest X ray and left a urine sample. I also had my testicles checked for lumps. This actually hurt. Like getting kicked in da balls. She really pinched them. She then put those rubber gloves on and as Peter Griffin said I had my 'innocence taken'. I had my prostate examined. She said everything seemed normal.

So now I had to wait a few days to get my lab results back. Normally I wouldn't be worried but this sore on my leg wasn't getting better and I was beginning to worry.

Catching up

The pic is of me about 15 years ago. I think I'm high and chilling in the backyard.


I am about 40 years old. No allergies and no medical conditions. I don't take medications except for an aspirin(325mg) that i may take everyday or so. I do not have high blood pressure and despite my current sloth like existence my heart and cardiovascular profile is excellent. In high school and University I was a runner, six days a week. I would average about 45 miles a week. I still have boxes of old running shoes (Brooks, Adidas, Asics, etc) and busted 'Walkmans'. All of the tape drives have been beaten and the headphones busted. I'm not sure why I haven't thrown them away. Anyway all of this running seems to still be paying great dividends almost 20 years later.


I don't smoke but I do enjoy having a drink. A real drink Hendrick's and tonic, Knob Creek and coke, a Belhaven. Most of the foods I eat are prepared. I don't cook so I eat out about every day, nothing fancy. I do concentrate on fiber. I try to eat at least 25g of fiber every day. This was under the advice of my nutritionist a few years back. Between the apples, pears and fiber bars I eat, I'm sure i exceed 25g every day.

Also my cholesterol profile is excellent, freak show good. I remember having a blood test retaken a few years ago because I was chubby and my lipids were too positive. It seems my sister has the same profile, so we have given this credit to our mother. She's German and can eat butter and salt all day long. As children we couldn't share popcorn with mom because her's was so salty and swimming in melted butter, almost a soup. I don't like butter except on toast and I cant remember the last time I have used salt on my food. I would think our modern fare is salty enough, no?

My parents are old, dad 77 and mom is 71. Grandma just turned 95 and still feisty, bossing my dad around. I actually take pleasure in this. Our family members tend to live for a long time despite how miserable their lives may be, especially during Christmas. My dad still works out at the gym and plays golf about four or five times a week. My mom reads a lot and watches TV.

Prior to me getting this leg sore the only medical thing I've been involved with was my gallbladder surgery. I had gallstones in 2003 and it was causing a deep dull pain on my side, so it had to go. I have a few tiny scars and no worries.

Anyway I haven't had anything medical in my life for a very long time. I even get my teeth cleaned every six months and haven't had a cavity in about five years. This damn leg situation is something totally new and inexperienced by me..

A trip to the doc..

This pic is the first of my sore. Its just a gauze pad being held on with clear medical tape.



Over the weekend nothing really changed. I was given a prescription for some antibiotics and for some anti inflammatory salve, Mupirocin. I was to put the salve around the edges of my sore a few times a day. This was easy because the border of my lesion was raised, however a moment after this salve was applied, i felt a stinging sensation. Not good.

At this second visit my doc was surprised that I wasn't complaining about pain. I said that I felt a slight sting while in the shower, from the soap, and from the Mupirocin but that was about it. It was about this time that I was explained what he thought I actually had on my leg. A very rare lesion called Pyoderma Gangrenosum but to be 100% sure a biopsy had to be performed. The doc had on a body length smock, rubber gloves and a clear face shield. He said that it was gonna hurt a little and that I may suffer some bleeding. Ok, that's fine. I've never been afraid of needles, blood, cutting as long as I don't have to actually see any cutting. The whole procedure lasted about 15 minutes. I felt some stinging but nothing major. I could see his little table with a strip of my tissue, about the size of a finger nail. He was cutting it into bits and dropping them into these little vials. He said that he was doing this so that he could send them off to different labs for examination. He was looking for bacterial, fungal, cancer and whatever else.

They wrapped my leg up after all was finished and now we had to wait for the results. He asked me to call the office in a few days for these results. It as this same week that I was scheduled to have a physical by another doc, internal medicine. So this leg wound is starting to have me run around..

Uh, what the heck is that..!?

I noticed a boil or 'infected hair' type lesion on my left leg. I slapped some Neosporin on it and went out the door. It was unusually painful for such a small bump, smaller than a dime. About a week later nothing was healing. It was getting larger, about the size of the ring on a can of soda. It had a raised ring around a lowered center. The center of my 'boil' was a dull white. It looked like a miniature cream pie. It didn't hurt at all but it looked gross and strange.

I went to a dermatologist and had come to the understanding that this thing was more than a garden variety boil. When I went to see the doctor he asked me a bunch of questions. What do I do for work? Do I handle hazardous chemicals? Who goes to a physician for an infected hair?

In my examination he made me undress and checked my entire body for other sores which I didn't have and also measured my leg sore. He then drew a line, using a magic marker, around my entire wound adding less than an inch of border. He said If over the weekend this thing grows enough to cross any of this marker call me on my cell phone. I was told to come into the office on monday and he was going to do a biopsy of my sore. Ok, sounds fine to me. It was this first consultation that I heard the name Pyoderma Gangrenosum.