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Dealing with Pyoderma Gangrenosum! PART III

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Posted 7/19/2009 7:34 PM (GMT 0)
Hey to all--

Penny and Jan--I'm looking forward to lunch.  Penny, what time do you want me to pick you up?  I'm flexible. 

Norma- HA!  I just told my son what you said about deer hunting in Alaska.  He's still laughing!  He wanted to go moose hunting there.  The outfitter we were looking at is supposed to be great.  A 10 day hunt was about $14.000!! To much for me but check it out it looks like a fun.  [email protected].  Our ship is Holland America.  I'm new at this whole hunting thing and need a guild.  We used one to turkey hunt too...way cheaper. Son just walked by again...still laughing at me!

LINE  "It looks good!"

Peace--Willow

Posted 7/19/2009 10:08 PM (GMT 0)
Norma,   The phrase that iritates me is "sometimes you just don't have a choice!" If I think about it, there are probably many more!
Posted 7/19/2009 11:34 PM (GMT 0)

 Hello All..First of all regarding favorite doctor sayings,I would go with "What the hell is that?"by my dermato;ogist when I first saw him recently(I had not seen a dermatologist in over 30 years),so this was our first meeting after finishing the wound clinic.It's like if you don't know who does?.Penny, guess I'll just have to hold on the yellow rope a little better,that way next time a new topic is started I won't get lost smilewinkgrin Kimike do hope you decide to stick around,as Penny says we don't want anyone to feel neglected or left out of the discussions.We are a unique little group as PG is one of those conditions that is little is known about(let alone sometimes how to spell or pronounce it),so we have to rely on each other,as you and your husband feel like we did "that of having to deal with this nasty and seemingly never ending cycle of treatments and remission.Unless someone has dealt or is dealing with PG they have no way of understanding the pain and frustration,for them if they see uncovered ulcers they tend to back away and say "ewwwwww".Want you and your spouse to know "WE DO UNDERSTAND,AS WE KNOW WHAT YOU GO THROUGH WITH".I would like to add I thank Penny for introducing me to this fine group,and now we are starting to grow,Penny,Willow and Jan have found through this forum they live close to each other,so that is an added bonus of extending support for each other,that is so wonderful.We Are able to share each other's experiences,and maybe new treatments,and the progress being made.

Don't know if I mentioned this(found this recently)"PG patients required 11.5+/-11.1 months of treatment  to achieve remission"think I found that "Bioinfobank Library".I'll try to get the website. More to come!!!!.

 (((HUGS TO ALL)))

 Mark

Posted 7/20/2009 4:00 AM (GMT 0)
Willow,

I say around 11ish? that way we can be at the mall around 12 for sure depending on traffic? Does that work for you Jan? Call me in the morning Willow...do we have Jan's mobile number so we can call her when we get there? Jan you can email your number if you wish, actually email it to my gmail acct because that goes straight to my phone. [email protected]


Love,
Penny
Posted 7/20/2009 4:19 AM (GMT 0)
I sent my number off to you Penny. Look forward to meeting you and Willow.
Posted 7/20/2009 4:37 AM (GMT 0)
Hey Jan and Penny--I will call in the am for directions.  I have an appt that should end about 10:45 then I'm on my way!!!:) I might be off by 10 or 15 mins but I'll see you then!  A nice lunch...how wonderful!:)

Happy Dreams

Peace and goodnight---Willow:)

Posted 7/20/2009 6:54 AM (GMT 0)
Jan and Willow,

I emailed you both :) and fwd' Jan's email over to Willow. That sounds perfect Willow. Wish you well on your appt in the morning.


<3
Penny
Posted 7/20/2009 11:58 AM (GMT 0)
Well, its 5am and my sleep schedule is all messed up, happens about once a week these days it seems. I need to lay down for a lil bit before I do lunch today with Willow and Jan...totally excited! hehe

Norma asks for something fun:

she says: Hey Everyone- Let's have some fun: What phrase does your doc use that irritates u the most?
Mine is: " I understand your frustration"!!

What irritates me the most is when they say "Ohhh it looks so good" It will never look good to me even when they are heal'd my legs are hairy and the color this nasty annoying disease makes my legs are just gross too :) but I DO LOVE when they say "Oh they have shrank some" so I could handle that statement but never "Ohhh they look so good" LOL GRRRRR!! :P hehe
Posted 7/20/2009 12:05 PM (GMT 0)

Two things docs have said to me during this journey that I thought were ironic were: "That's a very impressive wound," to which I would respond, "why thank you doctor, i can't take credit for it", and "You need a walking encyclopedia for this and I have just the man," ..... those two things stick out in my head.  I have really had very nice doctors none of whom I felt were condescending in any way.  Frustrated, scratching their heads, and wanting to get to the bottom of it, but never placating me. 

Ladies, report all the details about the lunch.... can't wait to hear all about it and if you're going to compare war wounds, perhaps you should do it in the ladies room rolleyes .... not everyone has the stomach for it!  Oh, and someone said they would have my fav dessert in my honor - carrot cake or any type of fruit pie. 

To the lady who felt ignored, if you'd like to send me an email, I'd love to chat with you person to person without everyone else seeing our exchanges: [email protected].

Off to work.......

Warmly,

Miss Camper

Posted 7/20/2009 11:11 PM (GMT 0)
Had a wonderful time having lunch with Penny and Willow! It was so nice to have been able to meet in person, but it also seemed like I already knew both of them, through our posts!

We talked and talked and almost forgot to eat!! I am so pleased to have people who know what it is like to have PG and truly understand what you are experiencing.

Wish we could all meet in person, but the next best thing is being on here. So happy to have a place for us all to be together. Thanks Penny for starting it.

Jan 

Posted 7/21/2009 12:02 AM (GMT 0)
Now I feel embaressed for saying anything.  I have been fighting this battle with pg along with Mike.  I do not have it, been living it.  He developed pg 2 years ago.  Tysabri was the doctors drug of choice, and it put him in the ER.  He could not breath.  In Feb. He started his first HBO treatments.  10 treatments closed his wounds for 14 days.  The pg came back angrier.  He wound up in the hospital 4 months late in fear of a bone infection.  He did not respond to any medication, topical or internal.  They thought he had a bone infection.  I made him go in the hospital on a Sunday night.  His ankle was swollen three times its normal size, and the odor was horrible.  Hospital experience was a joke in a half. They called what he had gangreen.  Mike went back to wound care.  The recently did 10 days of HBO.  Wound closed up again, but he is in extreme pain.  The keep healing the outer problem, but not the systemic problem, since Mike does not respond to any of the meds.  He goes for a colonoscopy on the 31st.  The specialist is looking to resection.  Mike wont have it.

   Thank you for wanting to listen.  It has been a long hard and difficult battle.  I appreciate you guys for caring enough to want to hear my story.

Posted 7/21/2009 1:09 AM (GMT 0)
Glad you checked back. I am so sorry for the awful experiences your husband has had and certainly feel his pain. PG sure is a difficult problem to fix, that we all agree on.

I hope the colonoscopy goes ok for him, has he been diagnosed with Crohn's, or UC?

Jan

Posted 7/21/2009 3:05 AM (GMT 0)
Hi Kim!!! Thanks for coming back :) That has made my night..... Again my heart goes out to you both. Poor Mike seems like he has been through so much pain, you said he had an infection? was it MRSA? Ive had it twice so far in my wounds.....they say its horrible to get rid of, goes dormant even and then returns stronger :( Does your husband have signs of an underlying disease? Crohns..UC..? I have signs of an underlying disease but had a Colonoscopy a couple of months ago showing nothing, but today I found out by Willow that that test doesnt always show everything, so always remember that. Im very sad that no meds will work for Mike, have you looked through all our posts to see what meds we have all been on and tried? has he tried all we have mentioned? maybe there is something out there that has been missed that can be Mikes miracle drug? :(

Kim, how are you holding up? It must be stressful on you...do you have children? if so what are their ages and how are they handling this? How old is Mike? Im 39(and holding!!!), and seriously never would have guessed that Id be going through all this at 39.

I had such a great lunch today with Willow and Jan.....THEY ARE SO AWESOME!!!!! We showed eachother pictures of our children and of course Jan of her grandchildren :) and we talked about PG and other things. The waitress had to force us to order basically she kept coming over and we were still chatting. Was bunches of fun!!! We went to this mexican place, it was yummy my burrito was HUGEEEEEEE! I felt like I was back home in Texas for a second!!!!

I wish more of us could get together face ta face!!!!


I will be sending prayers for everyone and their famiiles!!

Love,
Penny
Posted 7/21/2009 4:48 AM (GMT 0)
Sounds like lunch was a wonderful experience!!   Hope you guys can make it a habit!!!

Kimike, glad to see you back.  I understand what you are saying about the healing the outer not the underlying issues. With pyoderma, the wound works from the bone up, so it makes sense that is the way it would almost have to heal also( you just have to hope the drs treating it get that : )  ).   Its amazing to me that he has been able to keep his leg at this point, mine was was bad at one point, they wanted to amputate.  Does Mike have Crohns also?   I keep being todl until the Crohns is under control that the PG will never heal completely and the risk for more is increased.  At the drs last week, he is now suggesting Cimzia over Humira, he said more seem to have positive results and less side effects.  So I may be starting that in the next few months.

Where are you located?

Im sorry if you felt ignored before but hoping you can accept my apology.

If you want an email addy let me know.

Take care and give our support to Mike also.

 

Posted 7/21/2009 7:42 AM (GMT 0)
Thanks for the replies guys. I am glad you all were able to meet each other. It is great not to be alone in this.

Mike has had Crohns for over 25 years. He is 45. We do not have kids. Well, sort of. We have two dogs. They are my babies.

Penny, He has been on everything. Unfortunately the first derma punch biopsied it, and gave no wound care instructions which led to the massive dvt in the same leg. That was over a year ago. We are hoping the Pletal which he started after the last hospital stay will kick in. His blood is pooling in the ankle. He goes weekly for Metho shots and bi weekly for cimzia.

I hope you all are feeling well today. I am sorry for the battles you fight with this thing. Thank you for your replies. Not many people understand what this is.
Posted 7/21/2009 4:23 PM (GMT 0)
Hey to all-

Iam so so sorry that I didn't post yesterday!  It wasn't for the lack of trying!  My computer is having issues and no amount of encouragement or threats have helped.  It may also be operator error!  I just called Penny and she helped:)

Penny and Jan--How wonderful to meet you both!  Penny, once I found your home I was so thrilled to see you!  A real person not just a "voice" on-line!!!  Penny and I have not just PG in common but we both have zero sense of direction.  Our trip to meet Jan was met with wonderful" scenic diversions. " It was lovely to be lost so many times!HA  It did give us more time to talk though, and we both know how to do that.  I felt like I knew her before she got in my car.  What a happy meeting:)  Everything you all might  think about Penny ...intellegent,loving,determined,compassionate,vital and strong are true...10 fold!  We had great conversation on our way to meet Jan.  Penny you are delightful and inspiring and I'm so happy we were able to meet.  I hope will will be able to do it again:)

Upon seeing Jan my heart filled.  Jan had an immediate openness about her. She is one of those people you feel comfortable with instantly.  She was also ,as she is on-line.  She had a full and loving presence about her.  Her smile is contagious and her laugh is heartening!  Her optimism and steadiness are inspiring.  Goodness she has been through so much.  She delighted us with beautiful pictures of her huge family.  So cute are each of her granchildren:)  She was brave enough to show us pictures of her leg. They made me  feel sad but also not so alone.  That feeling of connectedness felt sooo good! Jan, you are so strong and loving.  I know why your grandchildren rush over to see you everyday.  I would to if I lived next door!

Miss camper--I apologize....I told you that I would have dessert for you(carrot cake is my fav too).  The conversation was so engaging that we barely ate our lunch.  I will make up for it today.  My raspberry bush is overflowing...pie OK?

Kimike--So glad you are back!  Goodness, you and Mike have been through alot.  I can tell how hard this is on you!  When you said "we" have been batteling PG ,I at first thought you both had it...and you do.  Your bond is so tight that I guess when one of you suffers so much the other one feels it just as intensely!!!  I am sorry about your struggles.  I admire your obvious love and committment.  He is lucky to have you!  You mentioned cimzia...what is it?  What kind of dogs do you Have?

Original--I am so sorry about your leg.  You must be a heavy weight champ to display the amount of courage and determination that you have to keep your leg! Do you also have Crohns?

Mark--Glad you followed the crumb trail back:)  I get lost too.  Ask Penny!HA!  I'm glad you have a garden to putter in.  It sounds just about like mine.  This year I have a huge crop of pumpkins as well....keeps me out of trouble too!

Gotta go...Thanks again to Penny and Jan for such a embracing afternoon!  I hope others will be able to meet up some where too...feels good:)

Peace--Willow

Posted 7/21/2009 6:28 PM (GMT 0)
Penny--

I forgot to ask...do you still have man legs?

Peace---Willow

Posted 7/21/2009 9:45 PM (GMT 0)
Hey Willow, we have mutts. Buck is 2 and Steve (she is a girl) is around 5. The name was decided before we met her. Thank you for the kind words. Cimzia is a new drug they found helps Crohn's. It is injections in the belly.

I think someone asked where we are located, We are in Willow Spring NC. Originally from NY. Moved here 6 years ago.

I hope everyone is doing well today. Kim
Posted 7/21/2009 9:59 PM (GMT 0)
Hi Everyone!

Hey Kim in my mind mutts are always the best dogs to have!!! :) I have 2 cats! Dotty who is over 1 yr full grown and weighs under 4lbs :) she is so tiny :) and Einstein who is also over 1 yr old and is a fat cat completely white!! :)

Ouch @ injections in the stomach ...ewwww I wouldnt like that :( poor Mike!!!!! Ive been thinking of you and Mike alot Kim, and hoping that something/someone would come along and give him some answers and help him with his pain. You said he is still working correct? :( what does he do for a living? If you dont mind me asking...Sounds like you have wonderful health insurance. I used up my FMLA :( and now Im on a long term disability, I will probably be hearing from my company this week *sigh* on if they are going to hold my job or not, I seriously doubt it will happen for the fact that they are even laying off and they took away our quarterly bonus' lately. Times are tough for everyone, even huge companies who have thousands and thousands of employees.

OH MY GOSH WILLOW!! I WAS SO MAD when I pulled into my parking spot at the wound clinic I looked over at my daughter (she insisted on coming this week with me) and I said OH MY GOSHHHH GRRR I FORGOT MY THINGYMABOB that Willow got me for my man legs!!!!!!! :( I was so ticked at myself!! So, gotta test it out on friday!! Thanks Willow for the kind words you almost made me cry!! Dont do that again!! :) hehe but seriously I really enjoyed yesterday with you and Jan. I hope you are feeling better and had a good nap.

Well, good news more shrinkage to my wounds my friends :) The one on my right leg will be closed in a few weeks if the progression continues. I argued with the NP today in the wound clinic about the scrapping of my wounds...she wants to do it so bad..its like she is addicted to it or something! She kept cutting me off everytime I would try to explain that PG people should never be scrapped, my daughter was getting annoyed that she kept cutting me off, but I was persistent in letting it be known that its bad for a PG'er...so I didnt shut up until I got it across to her, and I also said, you really should be careful about scrapping on PG people, you are gonna scrap the wrong person and find yourself in a law suit. She shut her mouth after that. HEHE :P and I said but you should really be more concerned on how horrible it is for a PG person to be scrapped I truly believe in my heart that my wounds got bigger because of the treatment that had previously been done on them. I then said, I will NEVER allow anyone to scrap my wounds ever again :) Not you, Not anyone. Im in alot of pain today because they take so long to wrap me that my leg being out in the open air for awhile makes it very painful, they just hate the open air!

I hope everyone is doing well today.

Much Love and Many Hugs,
Penny
Posted 7/21/2009 10:29 PM (GMT 0)
Kiera, I love fat cats. The insurance battles (disability) are a job in themselves. I know what that is like. That alone is enought to make you sick. He has gone out on STD 3 times this year. The first time the gave him one days pay. The second time they started the same delay tactics and I wrote consumer affairs. Cigan heard. LOL They approved. The third time they did not delay.
Mike is an engineer. He is just not mentally ready to go out on long term. I do not want to push him. It seems like the Crohns and PG have taken so much from him. I do not have the heart to challenge him.
I am so happy your wounds are shrinking, and even more proud that you told that lady to lay off scraping the wounds. People do not know what they are dealing with this. I think sometimes it becomes our job to school them. You did a great job!!! Kim
Posted 7/21/2009 10:43 PM (GMT 0)
original, Mike was on humira, then double dose. It did not help. Cimzia has slowed it down in my opinion. There is also a co pay plus program with that. I hope this helps
Posted 7/21/2009 10:52 PM (GMT 0)
Kim,

Hi...I understand about not pushing him to do that, do you think working makes him worse? Because in all honesty, his health is the most important. has he used up all his STD for this year? He does have 12 wks a year per law. I used that and have went past about 6 weeks or so :(( Makes me sad, but it is what it is, and God has always taken care of me; I know he will continue to do so. I agree about not challenging Mike on the LTD. Bless his heart, I know what its like when it comes to that feeling of maybe losing a career, this illness can sure turn your life upside down and twist it around a few times.

Thanks for the compliment on telling them how it was today on my appt. It just kept running through my head that another PG'er would walk in tomorrow and they would do the same thing to them, if I can save someone a little amount of pain, since this is painful enough on its own, then I feel like I have at least helped some. The pains that came with the scrapping of my wounds were tremendous, Im serious sometimes I would come home after they did that and I would cry for hours and hours and hours in so much pain, my disease is painful all on its own it doesnt need any help grrrrrrr


Much Love and Many Hugs,
Penny
Posted 7/21/2009 11:57 PM (GMT 0)

 Hello all..Kimike no need to be embarassed,you are among friends who what you and your husband are dealing with although even though your spouse has the condition,you are suffering right along with him.So Glad to have you all with us.Willow you put it right "puttering" in my little patch of ground,but I do try to get get as much I can.Speaking of legs..mine are still naked..I was so hoping to enter Senior Pageant next year(so much for that idea).Wonderful that you all were able to get together..makes dealing with PG at least a little more tolerable.With PG was mentioned"from the bone outward,"I tell folks it's like a volcano as it comes from the bottom up,even try to explain it to doctors like that."Well that's all for now.Hope everyone has a good week.

 (((Hugs))

  Mark

Posted 7/22/2009 1:45 AM (GMT 0)
Willow,   I must say, you sure have a way with words!! Your sweet and kind comments sure made my day, thanks so much. Have you ever considered being a writer?

Penny,  Good for you standing your ground! I am so pleased to hear that your wounds are getting smaller, hope before you know it, they will close for you!! You deserve to be in some comfort.

Kim,  Years ago, I went to a meeting that Cimzia had to introduce their medication. They had those of us who had Crohn's listen to what they wanted to print out in brochures and see if we thought it might be of interest to us. I must say, if Remicade stops working for me, I might just have to try it. For now, my insurance doesn't cover it, but hopefully that will change.

I can understand Mike not wanting to end his career, but it has to be difficult to have to continue to work while feeling so poorly. I hope better days are in his near future.

Mark,  What a good way of explaining PG, using the  analogy of a volcano!! I will have to use that with my medical people!

My best to everyone,  Jan

Posted 7/22/2009 2:17 AM (GMT 0)
Jan, Remicade was so good for Mike. He started it about 6 years ago. It helped his Crohns so much. They took him off when he developed PG, said it was no longer working. I asked the docs if he could go back on it, they said no. I hope remi continues to keep things calm for you. I loved what it did for Mike as far of Crohn's. But sometimes I do not know where Crohns starts and Pg ends. I know you know the same. I can not tell you how much of a comfort it is to know you all understand. I also can not tell you how sad it is that you all have to understand, being you have it yourself.
Jan where are you? Was Cimzia still in trials years ago when you went to the meeting? I take a great interest in how it comes to trials to approval.
Remicade is still in trials for PG at Johns Hopkins Hospital. Which is strange to me because remi usually takes care of it.
I knew as of 2008 cimzia was still in trials. Oh well, anything new is something good. Hopefully. Kim
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