Dealing with Pyoderma Gangrenosum! PART IV

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Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/24/2009 10:17 PM (GMT -7)   
Ok Guys LOL we have to make new threads after 50 posts and I will continue to make sure that.

This is a continued Thread from http://www.healingwell.com/community/default.aspx?f=17&m=1531009




Love,
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian

Post Edited (Kirei) : 7/28/2009 3:37:02 PM (GMT-6)


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/24/2009 10:21 PM (GMT -7)   
Kim,

:( so sad to see that Mike's wound has gotten worse today. I wish I had answers for you both :( What are the doctors saying? *sigh* Poor him :(


Jan-
WHERE ARE YOU?!?!? :( Im gonna call you tomorrow afternoon if you dont post before that :(

<3
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


kimike
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 7/24/2009 10:50 PM (GMT -7)   
Penny, the docs want him out on perm disability. We will start that on tues after his colonoscopy. We are also going to put our house up for sale. His parents are selling theres also. We will move to upstate NY to live with them. We will buy a mother daughter type home.

This thing just keeps fighting us. I am sad for my husband. He is a great man, should not have to battle these health things. Same for the rest of you!

Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/25/2009 1:46 AM (GMT -7)   
Oh Kim :( I Know that this is something Mike did NOT want :( I know that the last thing he wanted was to lose his career. Ive been there Kim actually just got on LTD myself :( and havent even been told yet from my company that my job is gone, but expecting it next week sometime. But, lets look at the positives for You and Mike, NEW YORK?!?! OMG Ive always wanted to live in New York! I dunno why but really truly I have!!!! His parents look as though they are doing this to be closer to you both? correct? This can be good, a good strong family support is needed with this...so Im thrilled that you both have this! Kim you are right, so many good people just like your husband shouldnt have to battle health issues, he is still young, so many of us are, I never thought Id be doing this at this age, and I know he never thought he would be either. However, the best thing in the world right now for Mike is to have support through loved ones, and other people who know what he is going through.

Does he know you come here to talk to us? Does he know we are thinking about him? Does he know he can come talk to us? Mike sounds like a very proud man, so if he doesnt want to come chat, please pass the message that we are here if he is EVER in need of friends. And for you Kim...for standing next to him...for loving him and supporting him, thank you. Honestly all the spouses and loved ones who are supporting people with this disease, you are all so brave and strong for doing this for the ones that you love.

You know Kim, this disease has also turned my life upside down, a year ago I was getting the promotion that I worked so hard to get, I was set. I just had moved to Washington for my company because of the promotion and I was going to buy a home here this summer. However, that just didnt work out, I may be moving myself...moving in with my parents, at first the thought of that just made me cry. Now, I have pulled all the positive out of it, and if it happens, its ok...its meant to be.

Keep us updated on him Kim....Thanks for being such a wonderful supportive person, this world needs strong women like yourself. It shows that you my friend are a true loving wife, I really admire that.

<3
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


kimike
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 7/25/2009 9:03 AM (GMT -7)   
Penny, thank you so much for all the kind words. It helps not to be alone. I have told Mike of all the wonderful support here. He will get on sooner or later to meet you all! I hope sooner

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 7/25/2009 11:54 AM (GMT -7)   
Havent been on in a few days but I am thrilled to see we are on to a part 4 !!!  Im just sad we keep having new people joining....well not the people just the fact there are more suffering with the PG.
 
My leg has been insanely painful the last few days, I am lucky if i slept a total of 4 hours.  No pain med touches it , so its just learning to handle it at this point.
 
Moving to NY kimike? What parts?  Western NY is wonderful! You can enjoy the seasons and go to Niagra Falls! Im in NW PA so I am partial to this part of the country!!  Fall is soooo beautiful in this area.
 
Kirei
 I mentioned to my derma, that your wounds were being scraped. He was horrified.  He said a little light scrubbing to get any build up off ( that sorta greeny colored stuff) is done to create better cell growth.  He seems to think doing the whole things just to be doing it is not helpful in anyway shape or form.  My whole calf was debreided in surgery, and its not been done since.   He also says he thinks the ocean water cant hurt it- so I asked for him to call insurance to get my beach vacation covered : )   dont think it will work tho  LOL
 
Currently I am using Polymem and its been great with keeping the new skin growth successful. I also had good luck with Hydrofera Blue, until it started staying too moist to help me. 
 
I've taken myself off Imuran in the last month without consulting my gastro.  He seems like the type who thinks meds are always the answer.  Im  having good days and bad  just as I was when I was on the Imuran, and the wound came in 2/10 which was the first in a long time.  So will wait and see how it continues.
Was gonna post pics, but the tiny url page was down at the moment.  
Hugs to all , and hoping everyone is having some form of relief today.
 
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 150 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


kimike
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 7/25/2009 12:22 PM (GMT -7)   
Sorry you are in so much pain. I read about that Hydrofre blue. It has not been tried on Mike.

We will be moving to the Kingston area. We are originally from Long Island and all of my family is there. It will be nice to get back. Just wish it was not because of health. But very thankful that we have the opprotunity because Mikes family is so good. I hope this gives Mike peace so he can heal and rest. He is just unable to work. That is the bottom line.

I think the dogs are going to love the snow.:)

willow22
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/25/2009 12:56 PM (GMT -7)   
Hey--
 
Penny I'm glad you are feeling better.  Yes, I do possess I form of "grace "that rarely  is matched.  Sorry we have it in common.  I told Penny about a fall from a ladder that hit my leg and now I have a new wound.  It happened so fast.  I'm not feeling so well today.  When I fell I must have hit my back too.  I started peeing blood yesterday.  I hate hospitals, as I'm sure you all do, But if this doesn,t stop I guess I'll have to go.  I'll give it another day.  The fun just keeps coming.
 
Has anyone heard from Jan?  I'm concerned about her.  Penny, Would you mind e-mailing her # to me again?  I lost the one you sent before.  Thanks.
 
Kimike- Sorry about Mike.  It sucks that he is losing his job!  I can hear how hard this is on both of you:(  I'm happy that you have such a strong support system.  Your family sound strong and tight-knit.  Going home will ease your loved ones minds.  Yhey won't be as fearful having you and Mike...and the puppies...close by to take care of.  I hope it will feel good to you both as well:)  You said Mike likes woodworking.  Has ne ever tried whitteling(bad spelling)?  I have a friend who makes the most intricate amazing walking sticks.  He enjoyed making them so much he started to sell them.  Just an idea.  You can do that sitting in a chair.  I'm envious that you get to go to NY.  I'm from VT and really miss the east coast.  I hope Mike can get some rest.
 
Original--Sorry you have been struggling so much. I don't know anything about Imuran but is it safe to just stop?  Be careful.  I understand about taking meds too.  Have you ever tried acupuncture or other alternative techniques?
 
Think I'll take a nap. I hurt.   Peace--Willow

kimike
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 7/25/2009 1:24 PM (GMT -7)   
GEEZ Willow. OUCH! I hope the bleeding stops.

Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/25/2009 4:00 PM (GMT -7)   
Hi Everyone,

Oh my goodness my 2 girls that live close to me are both falling apart, Im going to have to go take care of them both!!?!?! :) I called Jan, she is ok, she is in alot of pain and not feeling well at all. Im sure she will be back in a few days to post and update everyone. But wanted to let you guys know that I did call her to check on her. Willow, I will email you her number. AND do I need to come take you to the hospital? Omg peeing blood just scares me :( Geez! Im thinking about everyone and hope everyone is doing better now :(


Worried,
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


mikim
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/26/2009 6:26 AM (GMT -7)   
Hi everyone I'm Mike, the other half of Kimike. I've read through some of these threads and feel for all of you guys. I was dx'ed with Crohn's disease about 25 years ago. A few years ago I developed PG on my right lower leg.  The affected area is about 10cm x 10cm. There are also a couple of other smaller lesions on the leg. So far none of the treatments I've tried have done anything to help this wound. The only thing that has had some success is the hyperbaric oxygen chamber. The HBO therapy has quickly healed over the open wound twice, but a week or two after I stop, it returns. Some of the things I've tried are; dapsone, prednisone, Imuran, Humira, dbl dose Humira w/ Imuran, Tysabri and Cimzia w/ methotrexate. I think the most important thing I've learned about PG is that 99.5% of all the medical professionals know very little if anything about PG. Never let anyone debride a PG wound. Any trauma to these wounds is contraindicated according to every article I have seen. Thanks for welcoming us to your forum. - Mike

MissCamper
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 7/26/2009 7:16 AM (GMT -7)   

Mike -  Good to hear from you.... my doc, that took me a long time to find, is owner/founder of Somerset Skin Centre in Troy, Michigan.  He has treated the worst cases of PG, successfully.  His name is Dr. Murakawa.  Please get in touch with him.  My heart goes out to you and your lovely wife.  Life has a way of throwing us these incredible curve balls - not much for baseball myself but I've learned to play - I know there's something really exciting in store for your future!  Warmly, Kathy

 

 


willow22
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/26/2009 12:21 PM (GMT -7)   
Hey--
 
Thanks for the concern Penny but I live just a few miles to the hospital. 
 
Mike -- Welcome !  Sorry you have to be here but glad you found us...Thanks to Penny:)  It sounds like you have been struggling for a long time.  I hope NY will provide re-newal to your life. It sounds like Kathy has some great contact info there.  I hope you will be able to utilize it before you pack up and relocate.  All my best!
 
Tammy-- Sorry it took me so long.  Welcome!!!  Your story sounds much like mine.  I also thought I was bitten by a spider and was treated at the hospital like I was.  Two years prior I was bitten by a black widow and suffered severe anaphylactic shock.  All my muscles cramped up,tremors,vomiting, breathing problems etc.  I spent a couple of days in the ICU on a vent.  I thought this bite would be the same but it wasn't.  I had none of the associated complications but we still thought it was a spider bite.  Then the lesions started.  I was treated for infection with no results.  Later PG was diagnosed.  It's a long road.  I'm sorry you have to travel it:(
 
I want to apologize to everyone.  I'm embarrassed to admit that I just read all of the forum rules.  I didn't know that I wasn't supposed to digress into personal silly stories or that I was not allowed to mention web sites.  I'm sorry:(  This is the first true forum I've ever been on!  I will stay on topic.  Sorry:(
 
Peace---Willow

kimike
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 7/26/2009 3:05 PM (GMT -7)   
Oh no Willow, are we just supposed to be symptoms and disease without sharing the human side of us? Some times we need to smile about more then having a good day. Sharing stories helps that. UGH Politics.

Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/26/2009 3:23 PM (GMT -7)   
Hi Everyone,

Oh goodness well Willow, I never read them either, and I havent heard anything bad being said to use either about ANYTHING we have posted or talked about! So I say we continue until we are told we are bad! It would be different if we had alot of information on the net about our disease but we dont, so it is what it is! AND until they tell us other wise, we will continue to do what we have always done on this forum.

MIKE!!!!!!!!!!!!!!!! Im thrilled to see you have posted! My heart goes out to you and yours!!! We all know what its like, its def not a fun road to go down, but with the wife and family members you have the support seems to be amazing!

I need EVERYONE's Email address if you dont mind, its important that I have your email incase we lose touch, you never know so please take a few minutes to email me. If you have emailed me in the past, I have changed my email because my old one is like 10+ yrs old and I get so many emails that I dont want to miss ANYONE emailing me that is from this forum. Please email you dont have to write or anything just put in the subject line "Pyoderma" or something :)

Willow? how are you feeling? did you stop bleeding?

Love,
Penny

_______________

Penny, could you please just put your email in your personal profile, and that way I would not have to delete it in your posts.  Thanks!

Post Edited By Moderator (MMMNAVY) : 7/30/2009 8:28:38 AM (GMT-6)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/26/2009 8:34 PM (GMT -7)   
Kirei (OT) - if you put your email address on a post in a forum, web crawling software will recognize it and put it into a spam database. If you want to do it, write the address as "username at isp.com" to limit the spam. You might even want to make it "username at isp dot com" to make it harder for a spam bot to recognize.

Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/27/2009 12:25 PM (GMT -7)   
Thanks KEEPER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I changed it on the post :)
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/27/2009 12:53 PM (GMT -7)   
You have to be logged in and have an account to see profiles -- so the bots can't harvest your email on profile pages. :) I just logged out and double checked. Clicking on a user name takes you to a sign-in page, so it's cool to post your addy.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/27/2009 1:57:37 PM (GMT-6)


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/28/2009 6:15 AM (GMT -7)   
Hi Everyone,


Thanks Janicea :) I changed it back haha. I hope everyone is doing well, not many posts lately everyone must be very busy, hope noone is ill :( As far as me, I have a wound clinic appointment today *sigh* I really hate Tuesdays :( I will let everyone know how they wounds look today, Im in hopes of more shrinkage :)

Love,
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 7/28/2009 12:07 PM (GMT -7)   
 
 Hello everyone..Thinking positive outcome of your doctors visit today Penny,btw I updated my profile page,so you can get my e-mail address if need be,also I think my profile page is on either page 27 or 28. Been just trying to stay busy around my house,as well as thinning out my little garden,so I will be in and out.Doctors appointment with my PCP tomorrow,gonna ask him to do an ANA testing,as I haven't had that done for a loooooonnnnggg time. I too like the ability of sharing addy..think that is so neat.Well back to my chores,will post more later.How about that didn't get lost this time smilewinkgrin
  ((HUGS TO ALL)))
   Mark

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004),Glaucoma,CHF


happy grandma
Regular Member


Date Joined Jul 2009
Total Posts : 38
   Posted 7/28/2009 1:47 PM (GMT -7)   

Sorry, I haven't been on for a while, was in the hospital for a different problem ( I had an eshophagus stricture that took 3 procedures to correct). Been told I will have a very sore throat for possibly weeks.

Thanks so much for checking up on me Penny, that meant a lot to me.

I feel bad for any and all of you that are having difficulties. Hope there is improvement soon. For those of you feeling half way good, please enjoy the day for me.

Back to bed.

Jan


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 7/28/2009 2:49 PM (GMT -7)   
Hi Everyone,

Jan ....Glad you took the time to come to the computer and post. I miss talking to you, and Im thinking of you everyday and hoping you are feeling better.

I went to the wound clinic today, I have good news and not so good of news. SO! We will do the good news first :) My wounds have shrank again!!! The one on the lower right leg is about closed its only .04cm X 1cm :) very very very small. I think starting next week I will be going to the silly compression stockings :( but its better than wraps!!!!!! And YAY I can shave that leg!! Now, I will only feel like man legs on one side of my body! wootz!!! And, the not so good news... I go Monday to a specialist to get tested for Venous Insufficiency, I have read up some on this, I really dont want this on top of PG ...you can get ulcers on you from this disease so isnt that a double wammy for me? :( *sigh* But, hopefully it will come out to be Nothing. However, the NP is pretty sure I have this also.

Mark...Im so glad to hear you are staying busy. And Im so thrilled you didnt get lost!!!!!!!!!! :) GOOD JOB! hehe Thank you also for updating your profile...Can everyone walk in Mark's footsteps and please update your profile showing your email address for me? Please? Thanks! I dont want to lose contact with any of you, Im going to start working on trying to get a foundation of some sort together for PG.

I hope everyone is having a good day. Wondering how Willow is doing...she hasnt posted in a couple of days, I worry about her because she seems to be just as clumsy as me haha! :) I Love You Willow and I hope you are having a Wonderful day my friend.

Much love and many hugs,
Penny

____________________________

sorry, shouting

Post Edited By Moderator (MMMNAVY) : 7/30/2009 8:34:44 AM (GMT-6)


willow22
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/28/2009 4:52 PM (GMT -7)   
Hey to all--
 
Jan I'm so glad to hear from you and so sorry about the hospital stay!  Is there anything you need or want?  OMG....the heat here!!!! do you have a/c?  Do you need a unit?  It is supposed to get over 100 tomorrow.  That is very unusual here!  Plz let me know!  I hope they gave you something to get somewhat comfortable! Rest well.
 
Mark nice to hear from you as well.  Glad to hear you've been digging in the dirt.  Me too.  I just started to yeild some goodies...tomatos, squash,green beans,peppers and chilies!  My pumpkins are threatening to monopolize the whole garden...such as it is...I can't figure out how to re-route them just yet but I'm going to keep trying.  They are such a happy crop:) I hope your appt goes well tomorrow with good news!
 
Penny--Yippie for the shrinkage!!!  Celebrate that tonight...in an air conditioned theater or someplace similar.  Bring a pillow and spend the night.  My gosh it is hot!  Sorry about the venous issue.  I've had that for the last 10 years as well.  Thankfully the lesions I had never turned into PG and never hurt even close!  I found that the more I was able to exercise (I swam alot) the better controlled I was.  It is more difficult with active PG.  Hang in there and call if you need anything:)  Yes , I do tend to be clumsy but I usually bounce, no worse for the wear.  My boys think I look "tough" with my scars and bruises...Arnold-like!  We have to laugh don't we?! They told me to shave my head and noone would mess with me. HA! Humor is so important.
 
I saw my derm today.  He "showed" me off to a new resident that never heard of PG.  Hopefully these young ones will get better educated.  We need more people in the field having our backs. My wounds have grown a bit but not alot so thats good.  My stumbles didn't seem to make things to much worse...I 'lltake it!
 
Be Well---Peace---Willow

markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 7/28/2009 6:03 PM (GMT -7)   
 
 Penny..great to hear you got some good news with your wounds,hope it continues until they are gone.Now about Venous Insuffiency,it is mostly poor circulation especially of the legs,blood flow is usually fine going the leg(s),but runs into problems going back up.Compression stockings are a big help,and they come in some cool and very stylish colors..mine are black and tan..usually won't clash with wardrobe.They'll probably due a venous doppler study to see hoe the blood flow is going,and yes ulcers due form much like PG,but there are differences,found an article once about it but for the life of me have been unable to find it again.Well Hope everyone is doing o.k.
 
 ((HUGS))
  mARK

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004),Glaucoma,CHF


willow22
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/28/2009 7:37 PM (GMT -7)   
Hey again--
 
Penny--  Mark is right about the stockings helping.  I was offered them many years ago and though, like him I was able to match them to my outfits, I had a difficult time wearing them.  It takes time to get used to them.  I wore them for six months and did better with  a night time compression  machine. I think there are a couple of different camps surrounding what works best.  I hope you are offered all options.  I also had three DVT's that complicated things.  Heprin was my friend.  Age and weight can sometimes be factors but I had my last one at 40 and 126lbs.  These bad guys are to be taken seriously!!!  Don't be discouraged things can get better! The lesions don't translate.
 
Peace---Willow
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