HealingWell
Search Close Search
☰

Dealing with Pyoderma Gangrenosum! PART IV

Support Forums
>
Crohn's Disease
✚ New Topic locked
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/29/2009 10:59 AM (GMT 0)
I had a tough time finding this thread. When I do a search it only shows up to part three. Vascular disease is one of the side effects/complications of Crohn's disease. After getting the PG I also got a massive DVT in the same leg, kind of a bonus. Has anyone else tried hyperbaric oxygen treatment? I'm going to try and find out if medicare/medicaid will cover it. I'll let you guys know what I find. - Mike
Posted 7/29/2009 12:09 PM (GMT 0)
turn  

       good morning everyone< I went to the docs yesterday my ulcer is not smaller but is on the inside since its healing from the inside out so that is good, I meet with the rumo today since haveing asp is a rumotologic disease, I hope to get started on my blood thinner soon maybe today woo hoo and then my derm said maybe i could start humira injections and see how that does for my ulcers since I am waiting approval for remicade from my insurance company!! I hope I get better soon and off the prednisone I have been on it since dec 2008 this is getting old!!!!!!!!!

I will update you all on todays app!!

Sarah

Posted 7/29/2009 7:41 PM (GMT 0)
Hi Everyone,
Well I went and saw my dermatologist today. She is thrilled with the progress and she confirmed again NOONE should have their wounds debrided. :) I KNEW I was right! Proving again that a Patient with PG is smarter than the doctors who get paid for helping people!
I hope everyone is well.
Penny

Post Edited By Moderator (MMMNAVY) : 7/30/2009 7:16:54 AM (GMT-6)

Posted 7/29/2009 8:12 PM (GMT 0)
Hi everyone---

Healing inside out is the way to do it.  I hope the Remicade is your miracle drug. I hear you with the prednisone.  I've been on between 80-125mg a day for almost three years.  It sucks:(

Mike--Sorry about the DVTs.  Did you ever have a PE or filter put in? I haven't tried the hyperbaric yet but have been approved by ins and plan on doing it in Sept.  Plz let us know how it goes for you.

My MD is still waiting for the release of a new drug.  It is an Interleukin 12.  Anyone else waiting.  It is another biologic.  It was supposed to be released in Jan.  Still waiting.

Peace---Willow

Post Edited By Moderator (MMMNAVY) : 7/30/2009 7:15:47 AM (GMT-6)

Posted 7/29/2009 8:16 PM (GMT 0)
turn   turn turn turn Well I got a humira injection today the rumo thinks I will only need one or two injections!!! I hope this works it basically the same a remicade so we will see anyone else have this with luck on healing pyderma??
Posted 7/29/2009 8:21 PM (GMT 0)
Hi Guys,

Really glad that you have found Healingwell and this post is helping you all to share your experiences in dealing with PG. I would like to ask that you keep this post for dealing with questions and comments regarding PG. Anything off topic, could you please take it to either chat or personal emails. We need to try to conserve bandwidth, so that Healingwell can continue helping all, and if you have alot of off topic items the post gets too long and the thread has to be locked and another started. Thank you so much for your understanding.

Hugs
Gail*Nanners*
Posted 7/29/2009 8:55 PM (GMT 0)
Penny,

I am in no way attacking. The moderators like that you all have found a place to connect, we just ask that you keep the subject matter dealing with PG thats all. No need to go anywhere else.

Hugs
Gail*Nanners*

Post Edited By Moderator (stkitt) : 7/30/2009 7:54:16 AM (GMT-6)

Posted 7/30/2009 3:35 AM (GMT 0)
Hey---

Penny thanks for taking such good care of us!  This site has been one of the best things that I have encountered this year!  The support I feel both in sympathy and empathy is beyond compare.  Yes ,we get off track.  What a wonderful diversion!  We live in pain 24/7.  Any small happiness or opportunity to vent or just to share something silly is so welcomed... positive way to bond.  We need emotional relief too.  It saddens me:( 

Peace---Willow

Post Edited By Moderator (MMMNAVY) : 7/30/2009 8:12:46 AM (GMT-6)

Posted 7/30/2009 4:22 AM (GMT 0)
Penny, my email is in my profile

 

Kimike...I have bc/bs federal and they wont cover the hyperbaric chamber, and the wound clinic I see feels that until someone has almost closed their wound, its not always advisable.  Due to it sometimes closing the upper portions and not getting the wound healed from the bone up ( where its originating) which can also cause it to re-open.   Mine will hit the 2 year mark of being wide open and they have no time frame for closing, or if it ever will ( what a cheery thought).

 

To those of those with the DVT and Venous Insufficiency, what were your signs for that?  I have never heard of them before this board and never had either mentioned to me....so debating if I should look into this or not.

Hugs to all of you dealing with this or loving someone that has it.   

_____________________________________ 

 

 

 

Post Edited By Moderator (MMMNAVY) : 7/30/2009 7:53:54 AM (GMT-6)

Posted 7/30/2009 10:35 AM (GMT 0)
 I have United health care for the moment, I'm not sure for how much longer. They covered the hyperbaric twice, no questions asked and without pre-approval. Insurance co's seem to have no rhyme or reason, they won't cover my methotrexate injections. They'll cover the actual injection but not the drug. The metho is cheap, under 20$ for two months worth, they refuse to pay that but had no problem paying for Remicade, about 9500$ every 6 weeks, and Humira at 1700$ a shot. To date the only thing that has given me any relief from the PG pain is HBO treatment. My first go round with the chamber, my wound was much deeper, and the way it healed was that it gradually got shallower, like it was healing from the inside out. According to the wound care place that I was going to, there is no basis to the "closing the upper portions" argument. This could be because they have a chamber and use it all the time, (if all you have is a hammer, everything looks like a nail) but I don't think so. I can say from my personal experience that the HBO worked rapidly. The first thing I noticed was the pain subsiding. The problem for me is that as soon as I stopped HBO, and went back to work, the wound re-appears.

  DVt's and vascular disease are also common in people with Crohn's. When I first started up this whole PG nonsense, I went to a Dermatologist. I had done a little reading on PG and knew that any trauma to the site would not be good. The Derm wanted to do a "punch biopsy".  I let him talk me into it, and have been sorry ever since. A week later my lower leg and foot were pink and quite swollen, The derm said "don't worry about it, it's normal". My Crohn's doc saw the leg and said "You have a DVT, go to the hospital now and get an ultrasound". That was in May of 08 and I still have the DVT. Any unexplained, persistent swelling or color changes in the legs are possible signs of DVT so be aware. Wow, I don't think I've said this much in months.  - Mike

Post Edited By Moderator (MMMNAVY) : 7/30/2009 7:29:03 AM (GMT-6)

Posted 7/30/2009 11:26 AM (GMT 0)
HI!

Oh goodness Mike :( *sigh* I had a biopsy done also!!!!!!! Hated everything about it!!! and I will never allow that to happen again. Ive been through so much with the scrapings, I will never allow that again either! I was new to the disease and was in hopes that the wound clinic I go to every week, knew what they were doing, but obviously not! I know the feeling about wanting to punch someone in the face, or hitting something with a hammer, it does get very frustrating. I will say it again as we all have said a million times, I never would have thought that I would be dealing with chronic pain.
If you did not receive an email from me (Mike I emailed Kim's address) then please please let me know. I have gathered all the email addys I had and sent an email out this morning to everyone on our plans! Im excited for the PG'ers now :) not because they have this disease but because they have support online for this disease!!!!
Im not sure if it shows, but Im a very very strong willed woman, and have been strong willed my entire life. This is something inside me that can at times just take over. All of my life I have set goals and I have met them, My focus and goal now is to make sure we have support and that our group can stick together!! without feeling as though we are in the way, or that we are doing something wrong by posting feelings, or events going on in our life in general.
Please email me from the control panel info.
Thanks guys for your kind words, for all your support, I know I have told you this in the past, but Im going to say it again,  I really do not know what I would have done with you in my life the last couple of months.  I am so greatful!  Thank you!
Love,
Penny 

__________________________________________

Penny please read the rules about shouting/personal info.   

Post Edited By Moderator (MMMNAVY) : 7/30/2009 7:39:16 AM (GMT-6)

Posted 7/30/2009 1:24 PM (GMT 0)
Ok Ladies and Gentlemen, read the rules. I will clean up your post to make them within healingwell rules this one time.

Consider this your warning. 

I am not trying to be mean, believe me it would take less time to just flat out delete your posts, so please take this in that we want you to have support.  But you do not get special exceptions to the rules and I hope you realize there are a whole bunch of people who suffer severe quality of life issue here.

Please take care,

Navy

Posted 7/30/2009 1:44 PM (GMT 0)

Good Morning to All,

I am taking this opportunity to help explain a few things that feel to me as if they have become jumbled in this thread.

First of all I am posting with great respect for each of you, the members and the moderators.

A question was asked re how do you take your private conversations to chat?  Here is a link explaining chat and you are welcome to schedule a chat time for PD that you all would like to meet and chat about whatever you want as long as it is a respectful conversation which I am sure it would be.  Chat is a great place to meet your new friends and all of you can get together.   There are many chat rooms and if a "regular" scheduled chat is not in progress you are welcome to use whatever room you choose.

There is a link at the top here that reads "calendar"  You can see the scheduled chats set up by forums so any open rooms are available.

https://www.healingwell.com/community/chat.aspx

Re OT, this thread was about PG and yes you will stray to personal comments as all threads do..........however it has been noted by some of the moderators that perhaps you have gone off topic more then just a bit and as you all have developed a friendship it would perhaps serve each of you better to take the private conversations that are not related to the topic to our chat or your own emails.  No offense is intended here and this very same request has been made in other forums frequently.

Yes we do have threads that are for fun or just social type interactions.  The Fun Trivia was mentioned but if you note that thread is all about the Fun Trivia and how a  bit of fun in our lives helps reduce the stress and anxiety so it is related to A & P but has it's own thread.

Roll Call, Inspirational Quotes of the Day and many other threads are on the boards that are for all the members to participate in  but we do try to keep them on track. 

Comments made by your Moderator were not meant as any attack or disrespect towards anyone.  Therefore you may find an edit in some of your posts as a reminder that we do ask all to follow the rules of respect. 

Each moderator, being human with different life experiences, may see things through slightly different eyes and some variance is to be expected. However, moderators promise to base their decision making on the content of posts rather than personal feelings about the person posting in them.

If you have a question for a moderator on a decision, you can email them and discuss it privately. They may not see things the same way you do, but they are open and approachable.

My email is open as well as all the Moderators so please do use the email. 

One last comment, each person's illness is equal to the next persons...............we all have our diseases and disorders and therefore respect is an absolute IMHO. We only know what we read here and we do not know what else is going on in a person's private life so please do review the rules of HW.

Thank you for taking the time to read this post.

I wish you peace,

Kitt

Posted 7/30/2009 1:47 PM (GMT 0)
I will be more then happy to host or schedule a chat if you all feel that this is something you want.

What would be a good time for everyone with PG?

 

Posted 7/30/2009 1:58 PM (GMT 0)
Good luck guys!!! I am out. Will be in touch Penny!
Posted 7/30/2009 3:15 PM (GMT 0)
I was once so happy to  have found a site to connect with others and commeserate on the things only other fellow Crohns patients had to deal with.

I was even more thrilled to find others that had PG since its such a small group of people that are victim to this.

Im sad the support for us to relate to each other is being being challenged.

How is saying thanks to someone for being supportive of you and ones disease something that needed edited?
I wrote nothing offensive and I dont appreciate my words of thanks to others being removed.

 

Posted 7/30/2009 3:23 PM (GMT 0)
Hey--

How tragic to witness so many good people being maligned.  Not one of them has a malevolent bone in their body:(

Sadly and with tears...bye...Willow

Posted 7/30/2009 3:32 PM (GMT 0)

 To all moderators,first I wish to extend a big thank you for allowing folks in particular a place maintain a support system in particular for folks with PG. As I recall a request was made a while back to have a titled forum so that others with issues of dealing with PG could meet others who experience the same,the response was if I recall "would be too expensive,but we were free to interact just the same".That was just a few months ago,and since then the PG forum has really taken off,and probably gotten bigger than anyone could have imagined,numerous times old topics were closed and new ones had to be started.I thank you again for allowing us to be a part of website,and the ability to connect with others across the country who deal with PG.Although Crohn's and other conditions most likely have their origins from the immune system,like PG they all have distinct issues that the person has to deal with. For the most part I have dealt with PG for over 32 years,this condition has cost me a previous military as well as  most recent my career in social work,I am grateful for Penny for finding me and introducing me to HealingWell.com,as well as the other friendships made here.I will be joining her and the others choose to go.Thank you HealingWell.com and I do wish you all the very best in your day to day issues with your respective conditions. Penny,I will e-mail you soon.

 (((Best wishes & HUGS to all))

    Mark

Posted 7/30/2009 4:03 PM (GMT 0)
Thank you Mark!
Posted 7/30/2009 4:30 PM (GMT 0)
I will never return to your forum. To all moderators (deleted).

Please be respectful of moderators and other members.

Post Edited By Moderator (Judilyn) : 7/30/2009 10:37:08 AM (GMT-6)

Posted 7/30/2009 4:41 PM (GMT 0)
There seems to be a feeling here that if there were a separate PG forum, the rules would be different and you could make whatever guidelines you feel work for you. I totally understand that wish, but please know that the forum rules being cited here apply to all HealingWell forums. A PG forum would also have to follow the rules established by the Administrator.

I just wanted to reassure you that you aren't being singled out or picked on here; all of the forums follow the same guidelines, which are set by the site owner/administrator.

I hope you won't find it necessary to leave, but wish you only the best if that is your decision.
Posted 7/30/2009 5:10 PM (GMT 0)
Wow--

Navy--I sure hope you misspoke when you said "But you do not get special exceptions to the rules and I hope you realize there are a whole bunch of people who suffer severe quality of life issues here."  Are you serious?!  Do you mean to insinuate  that our quality of life issues are trivial and diminutive?  So many here are in severe pain 24/7.  If our wounds heal they are disfiguring and for some ,still painful. Our wounds can come back at anytime even after being dormate.  Many have lost jobs and careers that force them into long term disability.  This disorder effects every relationship we enter.  We are frequently misunderstood and dismissed by the medical folks.  Because PG is so rare we don't resourses available to us.  This forum was a godsend.  We all also have associated disorders that add insult to injury. To negate our suffering in nothing short of insolence.

Stunned---Willow

Posted 7/30/2009 5:52 PM (GMT 0)
Willow,
I am sorry I certianly did not mean to come off as negating your suffering, and I absolutely apologize if it is coming off that way.  But I am incredibly hurt that you would think you suffer alone here.  The reason why these issues have come up is that I and one of the other mods who suffer from pg (which was orginally dx as hs for me (and I completely have empathy with how difficult it is to be dx), and I am sure you can imagine how painful pg is around a cast, especially on a weight bearing limb, althought I feel lucky in that mine is small and not on a joint) have not been on the forum much because I am dealing with a broken thigh/cracked hip, and she is dealing with life threatening cancer.  I am in pain all the time too.  I have several disfiguring burns and wounds, and chronic weeping wounds are definately not fun.  I completely agree.  I too have lost my way of life and have not worked at all since 05, because I have been too ill.  But what I have a problem with is people saying that they suffer so much more then another, when they have not even bothered to get that other persons story that is what I meant by there are people who suffer severe quality of life issues. 

I why do you think I have offered to schedule a chat?  It is something that I do out of the goodness of my heart and empathy with the issue.

Unfortuantely, I think autoimmune issues are extremely devalued by the medical community in general, and I think it would be better if we banned together by emphasis on our commonaties and not excluding people by just assuming because they have not participated does not mean they do not suffer with. 

I hope that I am expressing this in the helpful way that it is meant, and I hope you can forgive me (I am on IV morphine and getting a blood transfusion right now in the hospital)  for not having the words to express the helpful healing spirit in which it is meant.

Please take care,

Navy

 

Posted 7/30/2009 6:06 PM (GMT 0)
Willow,

I was not going to respond to this post anymore, because quite frankly it has upset me greatly. But in response to your post, Navy was just saying that PG is not the only condition that causes people to suffer severe quality of life issues. Many of our the members on this very Crohns forum, including Navy, have lost their careers due to the damage that severe Crohns Disease has caused to their bodies and are on longterm disability. Navy was a Naval officer until she was hit with Severe Crohns. Everything you have described that you suffer with, we do too. We have unimaginable pain that can be 24/7, our disease comes back after being dormant, it effects every relationship we have, we too are frequently misunderstood and dismissed by medical community. And we all have associated disorders that add insult to injury too. No one is negating your suffering, but with all due respect, do not negate ours either.

Respectfully,
Gail*Nanners*
Posted 7/30/2009 6:58 PM (GMT 0)
Admin has been notified and requested that this thread be locked.  Any further posts to this thread will be deleted.
✚ New Topic locked
123