Dealing with Pyoderma Gangrenosum! Need advise! Do you have PG, or anyone you know?!

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Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/2/2009 8:45 PM (GMT -7)   
Hi Everyone,

I recently signed up on the forums when I came across this site while researching PG. I don't see many posts on PG, I was just wondering if there is many people out there with this disease? If you do have this disease, how do you deal with working and controlling the pain, or can you not work while having a flare up? How long have you had this disease? Do you have another underlying disease? (most people with PG also have an underlying disease that is associated with PG, example: Crohns, IBS, UC) I just got diagnosed with PG 2 weeks ago but it took months to get it diagnosed. The pain that is linked to PG is horrible. Im currently on Fentanyl (pain patches) and Hydromorphone. Along with PG my wounds (which I have 3, 2 on my lower left leg and 1 on my lower right leg) are infected with MRSA (staph infections) so Iam also on antibiotics. I also go to a wound clinic weekly and they wrap both my legs to keep down swelling to help the healing process.

Four days ago I started Prednisone(steroids) a medication known to help PG patients heal. The side effects that I have read about this medication is terrible. However, my dermatologist says that I will be short term so I shouldnt have to deal with the terrible side effects. She is going to put me on another medication after I get finished with the Prednisone, I cant remember off the top of my head what that medication was called but I will keep everyone updated once I find out.

Last week I got a colonoscopy to test for Crohns and UC, the GI doctor says that from what he saw he didnt think I had either one, but would find out more with the biopsy report that he would get back this week sometime.

If you have PG ...please tell me your story, let me know how the healing went, if you ever did heal, do you have flare ups often? etc. I have had my wounds since Aug 08, Im tired dealing with this
disease has been so depressing for me. I keep trying to stay positive but its hard after almost a year and not getting any results. I know I have only been told for 2 wks that I have PG and it may take time to get progress going on the healing, but its hard to stay positive when its been so long dealing with the pain :( and knowing Ive been off work for 11 weeks and I cant afford to lose my job, Im a single mother and my leave of absense runs out next Tues.


Thanks for listening guys!

Post Edited By Moderator (Ides) : 6/5/2009 5:54:11 PM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/2/2009 8:49 PM (GMT -7)   
Ow. I'm so sorry you have to deal with this.

As you probably know, many of us have been fortunate enough to escape PG, so it's not a topic that's discussed on this forum every day. However, I did a quick search for you, and found a lot of pages that you might find interesting. You can find them here.

If that link doesn't work, try Googling:

pg crohn's site:healingwell.com


All the best to you, and welcome to the forum,

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/2/2009 8:53 PM (GMT -7)   
Thanks Ivy! :) I have read so much on PG, and everything that is even associated with it. I really have learned a lot the past few weeks. Sadly I haven't been able to find any support groups for this disease and I know there must be so many of us out there, I mean sure 1 out of 100,000 isn't much, but I would love to pull together a few people dealing with this, maybe we could learn to lean on one another to help us get through the horrible journey that we have before us.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/2/2009 8:56 PM (GMT -7)   

We have a member, Kimmy2, that is currently dealing with a stubborn case of PG. Here are links to a couple of her recent posts:

http://www.healingwell.com/community/default.aspx?f=17&m=1470575

http://www.healingwell.com/community/default.aspx?f=17&m=1480572

One of our moderators, Lyn, has been dealing with PG for years. I'm sure one or the other of them will be along at some point and see your post. If your post falls to the 2nd page without them seeing it, please feel free to bump your post to the top.


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/2/2009 8:57 PM (GMT -7)   
Some of the threads I found through that Google search are quite recent, so I hope that you'll have some people to talk to within 24 hours or so.

I'm not quite sure where you live, but it might help you to know that this is traditionally a very quiet time here at HW: things start to get more lively in about nine hours, when the Americans wake up, so I hope you'll have some answers soon after that.

Best wishes,

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/2/2009 9:04 PM (GMT -7)   
I have seen Kimmys posts..I actually posted last night on her post but no responses, so I wanted to start a thread about PG to see if I could touch base with some other members that may have PG. I hope Kimmy is feeling better, I read her entire story and she is new to PG like me, she was just found out she has PG in March.

A few other questions is, I have 2 teenagers, both of them are having a rough time knowing that Mom is sick. My oldest who is 17, she even cries because she hates to see me like this. My son who is 16 seems to be blocking it out all out and trying to ignore it. I try my best to stay positive with them of course and I try to never show the pain when they are around. Any word on how to help the children deal with seeing a parent go from perfectly healthy to going to a different doctor 4 times a week?

Yes I have 4 doctors, and will have a 5th next monday when I go see my new Infectious Disease Specialist.

Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/2/2009 9:10 PM (GMT -7)   
Im American, Im in Washington State, and If I dont get better soon, I imagine I will have to quit my job (which I love and adore) and move back home to be with my family there, which is Texas lol (THATS A FAR DRIVE BY THE WAY)!!!

Im worried about how to deal with the pain and still hold my job down, I work for a big company, my job is behind a desk but also very very fast paced and very full of responsibility. I'm a Business Systems Analyst for T-Mobile, USA. The policy is no pain pills at work, so Im in hopes that I will be able to keep my pain down with just over the counter meds.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/2/2009 9:33 PM (GMT -7)   
I'm a fellow pg-er. I have one sore on my back, on my shoulder blade. it's not nearly as serious as yours, but it's been a 15 year fight. drives me nuts. my heart goes out to you and I'm sending you my best wishes.

I've been thru local shots of prednisone around it (got it infected), a thousand cremes and ointments (mostly steroid) it's like a window into my crohn's disease, the worse my guts are the worse my pg is.

the MRSA is totally impeding your healing I'm sure. Getting that under control will help you loads. I've not had it in my pd, but I got it my last surgery at an incision site. JUST dealing with that is awful, so my heart goes out to you.

I hope you can keep your job! If it makes you happy it's so important. Perhaps they will have to accomodate you with the PG as a disability? That's out of my league to talk about, but maybe someone can help if that becomes an issue.

I cant say I hope you have crohn's because that's an awful things to say, but I guess what I hope is that they find an underlying condition that they can treat along with the pg. I was able to take some crohn's drug (mesalamine) for a couple of months before i got allergic to it, and it helped my pg a whole lot.... unfortunately, once I got allergic to the 5asa compound it was made of, it made it worse. Up and down.

which I had more than my very best wishes to offer. :) keep us posted.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
just started on LDN cream (working!) ~ allergic to pentasa and 5ASA's. I'm taking Boswellia Serrata (works!) Just came off Xifaxan. Making 24 hour yogurt (FUN!) Using Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG.


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/3/2009 3:28 AM (GMT -7)   
Hi Janicea,

Thanks so much for the reply. My dermatologist offered me the local shots of Prednisone it would be faster healing, but my wound clinic doctor requested from me that I not do that because it may slow her treatment that she is doing to me down, its like a catch 22 with this disease..Im darned if I do and darned if I dont it seems. My wound clinic will be trying to do the temp skin graft soon again, Ive had it done once before but didnt have good results because it was before they knew that I had PG but now that Im on Prednisone they think it may be a good thing for me. This new skin graft product is made from believe it or not baby foreskin cells, its a small layer of cells that they put over the wounds and what this does is it encourages my skin to start reproducing and start healing, its actually pretty awesome how it works. However, it didnt work last attempt, it did seem to help with the pain but other than that it didnt really start healing, but they say thats because I was getting zero treatment for PG because at that time they didnt know I had PG.

As far as the MRSA treatment, currently Im on 2 antibiotics, and when I saw my dermatologist today she wanted me to not do oral treatment but for my wound clinic to order antibiotics via IV. After that appointment I went to my wound clinic appointment and they said, no they wanted me to stay on the oral pills (which makes zero sense to me) and to wait to start IV treatment until I see their Infectious disease specialist, this to me is retarded...we already know I have PG and we already know I have MRSA ...what the heck would a specialist do for me now? LETS JUST ATTACK THE INFECTION with something strong!! wouldnt you say? Ive had this infection before in the wounds, and IV is what helped!!!! Sometimes doctors annoy me :( Why put this off any longer, why not just do the IV like my dermatologist requested, she would order it for me at the hospital but for some reason she cant order it, it has to be my wound clinic doctor or my family doctor (which Im going to call about this since he knows all about my condition)

Any advise on pain control when unable to actually take your prescribed pain meds? Since Im going back to work next Tuesday Im so worried that I will not be able to function normally w/out some kind of pain control :( You know how very painful PG is, to me its 100x's worse than even having a child!

Thanks for listening Janicea, and I wish you luck on your PG...I hope that they find a cure for Crohns and PG very very soon :)

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 6:09 AM (GMT -7)   
do they drug test at your job? If they don't I'd take them anyway. If they do, I'd be tempted to go to HR show them my wounds, tell them my story and see if they'd make an exception. I guess the only other thing I can think of would be acupuncture. My pain is only upon contact. what is yours like?
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/3/2009 8:19 AM (GMT -7)   
I dont get randomly drug tested at work, and thanks for the great idea about going to HR and explaining my story. My pain is horrible, it hurts all the time....the wounds are large.....and because they are on my legs I would assume thats why they hurt so much, my legs swell, this is why I have to keep them wrapped to keep down the swelling. Below is a picture of them from 05/29/09. PLEASE DONT GO to the link if you cant handle seeing nasty things, my wounds are NOT pretty :( and you will be able to tell by just the picture how painful they would be, or least thats what my family has said when they have seen the pictures of them.

I hope this picture doesnt offend anyone :(

http://i42.tinypic.com/2lt4i0.jpg

The wounds are almost touching now, but hopefully since starting Prednisone we can get it under control to stop the growing progression of the wounds.

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/3/2009 8:39 AM (GMT -7)   
I  am PG also,  dealt with it for  about 3 /2 years now.
 
The latest one has been an open wound for almost 2 years.  There seems to be no one way to have this disease treated. What works for one, doesnt seem to work for another.  My wound has always been covered and never left to the air.  Another on the board has always been told to keep hers open and never covered.
 
The pain that begins with PG and continues with PG is something that people will never understand unless they experience it.   Its a constant.  So far I have not found any meds to touch the pain I feel with it, so basically I do without.  The one on my right calf is from the ankle area, to about 1 1/2 inches below the knee....it expands the whole way around the calf..all but 1/2 inch in the back center.  They wont do a skin graft due to the chances with having Crohns, that it wont heal correctly and any puncture site could lead to PG  and that would leave me with 2 open wounds.
 
Currently I am on Imuran, and the drs are wanting me to go to Humira. I said the ads all say not to be used with an open wound. They seem to down play that.  I had allergic reactions to Remicade but so far nothing seems to make a difference with the leg wound.
 
Keep me posted on whats going on with you.  Sorry  you had to become a member of the PG club.
 
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 50 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.
 


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/3/2009 8:50 AM (GMT -7)   
Hi Original,

Thanks for the reply...I hope that you start to heal and they find some kind of treatment that will work well for you. Thanks for sharing your story with me, it really does help to know that there is others out there fighting this battle with me, although I would NEVER wish PG on anyone, not even my worst enemy (not that I have any) but you get my drift. I will keep everyone posted on how things go and what steps doctors take with me and treating my PG, and I hope others will do the same, maybe we can help eachother, hearing how others are treated may give us ideas to give to our doctors.....

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 9:05 AM (GMT -7)   
Kirei, it would be wise to see a lawyer that specializes in employment law, I'd suggest you get an opinion about disability accomodation before you go into HR. I took a quick look on the web and it looks like your employer gives you disability insurance (I just glanced so it's up to you to check) and in case working does not work out for you, i would suggest after being in the corp world for a looooooong time, that you cover your butt before you present a case for accomodation (ie pain pills etc) -- and know your rights. No one in HR is going to understand PG. The last thing you need is a keruffle. maybe others can weigh in here, but I suggest a cautious approach so you are in the power seat!!! all the best.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 9:08 AM (GMT -7)   
also i looked at your pic, all that red looks like staff to me. once that gets better, I bet you're on the road to improvement. hang in there. I think the steriod shots around it are a bad idea based on my experience. As nuts as this sounds, after a bunch of other treatments, simple silver sulfadaine cream is working (slowly) for me if I pack it and keep it covered. hugs!!
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/3/2009 9:24 AM (GMT -7)   
Janicea,

Thanks for the awesome advise. I think you are right just running into HR telling my story isnt going to help me at all, because they have no idea what PG is. I will get in touch with a lawyer after I look up policies for the company :) *HUGS*

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/3/2009 9:58 AM (GMT -7)   
What type of treatment are you doing? is it a moist covering? packing it? or are u being advised to keep it open?
I have done a lot of different treatments and am always curious to know what others are using, to see if there is something new, that I can find, to give this thing a jump start into healing more.

On a side note, you mentioned having kids,I have 2 daughters, the youngest was 16 when this all started and still living at home so she went thru all the hell with me. The PG she has seen and is horrified by it.
I had one on the instep of my left foot for a year prior to this one. I almost lost my leg because of the infection in it. I was unable to walk and had to use a wheelchair for over 4 months. Thank goodness I am able to walk now, with a totally different gait than before, but hey its walking LOL.
When she graduated, I was forced to move in with my mom....from KS to PA....due to not being able to support myself an ex who fails to want to pay support( thats a whole other story but getting resolved now LOL)

Good luck with the HR area. I was a stay at home military wife so I never dealt with that end of things really. But I'm always here with a listening ear if you need one.
Take care.
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 50 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.
 


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/3/2009 11:20 AM (GMT -7)   
Currently the treatment I am doing is, they are wrapping my legs with coban wraps, and what they are putting on the wounds itself is different things, they have tried alot of stuff, creams, etc. right now they are using this stuff that looks like a thin sponge, Im not sure what its called plus this red/dark brown stuff thats creamy. I keep it wrapped all the time, I never take off the wrapping...week before last they had me taking off the wrapping and trying the wet healing approach by changing the bandage 1 time a day and then re-wrapping my legs...this did not work for me at all, Im not a pro at wrapping so my wraps would be uneven and my legs were swelling from it...also the ace bandages wouldnt stay tight or up on my legs specially after sleeping. So I told them this was not working for me and they agreed after seeing the swelling and my wounds grew like an inch that week. So, right now I go into the clinic every 4 days to get it cleaned and wrapped. When the infection is gone I will go back to just once a week wraps instead of every 4 days.

Im so glad you are walking again, that must of been so stressful and scary for you :( I hope that you had alot of support during that time to help you through it. I really wish there was a foundation for PG or a support group of some sort. Im glad I found this site its really helped me the past few days to know that Im not alone.

So yes I hope I dont have to do what you had to do and move in with my mother. I would have to move across country. Im excited about going back to work, and getting some part of a normal life back again, instead of just focusing on when my next doctors appt is. I pray that the pain will not be so bad during the day.

This has scared the hell out of my 17 yr old daughter too. Her and I have always been very very close, not that Im not close with my son, but her and I have always had a strong friendship...but when she was around 15 she was a typical teen and I hardly seen her come out of her room for 2 yrs hahaha, now that Ive been sick ..we spend so much time together, its really been nice...we watch alot of Movies together, and most of the time I end up falling asleep because of the pain meds during the movie HAHAHA But she is sweet she doesnt wake me up she just lets me sleep and when I wake up I say "oh Amber baby Im sorry I fell asleep" and she responds with "Its ok mom, but wow you snore like a monster" HAHAHA! then I blame that on my meds making me extra tired so thats why I snore!! lol

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/3/2009 12:17 PM (GMT -7)   
I was on the wound vac for the first 2 weeks, after that went to the Restore Silver( which is like a brown mesh material), then went to silverlon, then to Hydrofera Blue, and now I am using PolyMem. Some of the treatments are changed 3-4 times a day others stay on for a day or two, with just the gauze and kerlix beingchanged out. I have become a pro at the dressings, at the wound clinic they just let me do it. Its easier for me to control my own pain than let someone else mess with it.
My daughter has been an amazing support. Sadly shes scared she will end up with Crohns and PG. I pray no one else ever has to deal with either sometime in the near future. When I was diagnosed with the PG I was told how rare it was. To this day its something a lot of the drs dont know much about but its becoming more known sadly.
Take care....keep in touch!!
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 50 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.
 


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 12:24 PM (GMT -7)   
my treatment, over 15 years has been all different, due to the fact that no doc recognised it for what is was until recently. My GI caught it. Like Kerei, I managed to get a secondary infection in mine. Staph also. Not MRSA though. Thanks to my last hospital stay in July.

I'm allergic to adhesives and it's on the shoulder blade, so it's been a bit@h to deal with for me. I can't wear bras except tbacks LOL.

Here is what I do incase it helps anyone.
1) take care of the inflammation in my intestines as well as I can, because "as above so below", meaning that if I'm inflamed badly in my intestines my back is a mess.

2) what's not worked: steriod injections around it, steriod cremes, steriods, antibiotics (oral too many to name).

3) what helps:
- when the staph was bad, Mupirocin Ointment -- just to get (mostly) rid of the staph and other bacterial issues

- bathing only in water that has epsom salts no soap. Alot of epsom salts (1.5-2 c /bath or so). Air drying it totally. no showers (cause no salts). When the sores look like Kirei's, which mine does (almost identical!) - no debriding, gentle touch only arond the edges.

- Now I'm using Silver Sulfadiazine cream and I finally found a bandage I can tolerate Curad Sensitive Skin. Believe it or not, this in only 10 days, has started closing up the deepest level. It's the fastest improvement I've seen so far. I choose it because of this article:
http://www.woundsresearch.com/article/758

- I don't let ANY medical person touch it without watching them like a hawk to make sure they're sterile. I don't set foot in a hospital without making sure it's closed up and wrapped so nothing can get in (I don't know if this helps but i freakin hate staph and it makes me feel more in control).
Obviously if you're going into the docs to get it taken care of, that won't work!! but any other reason? I hide it all clean and wrapped up!

What may or may not be helping:
- carrot juice. I think I was deficient in Vit A
- LDN: I have no idea if this is a coincidence or not, but I've had more healing since i started taking it than i ever had before, but that may be a product of the fact I started the Silver Sulfafine packing at the same time, no way to know. But thought I'd toss it in.

That's my story kids. It was theraputic to share. thanks.





-
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 12:28 PM (GMT -7)   
Original:
do you any feelings about Restore Silver, silverlon or Hydrofera Blue, or PolyMem?

HUGS to you too!!!
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 12:35 PM (GMT -7)   
ps: Kirei -- I'm glad you're going to consult a lawyer. I think that is a fab idea. Doing that might totally change your path to make it all work for you. Keep us posted of course!
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!


missy1979
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/3/2009 1:09 PM (GMT -7)   
Hi, I have Crohn's. I am 29. - I had a ileostomy created July 04 - as a result of a very badly ulcerated colon and battling the disease for two years. My stoma became my best friend - I had no problems until a very stressful period of my life in Jan08. I started to get a raised bump around my stoma in Feb 08 and it erupted while having an antibotic infusion in Mar 08. Doctors thought it was infection etc.. and they just kept giving me flagyl. It was so sore and I was finding it impossible to put my bag on because of pus etc... it was so sore I couldnt walk. Eventually after three weeks of tests my surgeon realised it was PG (I think he researched symptoms) I was told the area was so bad I would have to have stoma moved to my other side (disaster because it doesnt always settle on the other side i was told). Then a consultant wanted to try infiximab but I'd had a reaction to it before so he said I should try HUMIRA (adalimumab).
I was willing to try anything because I really didnt want that long op again. Within a day of taking the loading dose the pain had gone!! I self injected once every two weeks and as the injection started to wear off towards the end of the second week the pain would come back - but then Id take injection and pain went away. I developed PG at another area of the stoma site but it didnt spread like the other wound. Then in Aug 08 I developed fistulas at both PG sites that were healing (typical). However they havn't got any worse than when they developed and the PG has cleared there (pus stopped at both sites within a few weeks). The fistulas are annoying but I have faith they will heal in time.
Jan 09 felt funny - I could feel my crohn's flaring - had pains - then noticed my stomach going very red around belly button area and I thought I had a hernia because it was so sore. I made emergency appointment and the night before I went to the consultant I noticed a few purple spots (I knew then it was the PG) I pushed against the area and so much pus drained out - there were two holes after that - consultant told me to change to once weekly on humira and I took a course of steriods orally - I had no pain in that PG site it healed in a few weeks and all thats there now is scarring.
So humira has been a life saviour for me and at the moment my crohn's is flaring so it helps with that as well. The thing about it is that it only helps the PG and crohn's not to get worse when they flare up (which is good) but it doesnt cure the diseases. I also noticed that the three areas where PG struck where my weakest spots (stoma and scar on belly button from op).

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 6/3/2009 1:49 PM (GMT -7)   
Here's my experience with PG:

1st flare: It wasn't until well after I was having GI symptoms that I started developing what I thought might be a brown recluse spider bite on the side of my abdomen. It was getting pretty large and ulcerated in the center. That one didn't hurt much. I also developed a large sore inside my cheek, which was probably also PG. That one made eating pretty miserable. Prednisone healed them up quickly, but I have a small scar on my side now.

2nd flare: For months before I started having GI symptoms, I started getting what I thought was acne on my arms. They never got much bigger than acne, but seemed deeper. I tried various acne medications and they seemed to kind of work, but the blemishes would persist for weeks and even months. It never really occurred to me that they might be PG since they were small and I wasn't having any GI symptoms at the time. When I did, my doctor thought they were PG. He didn't think they were Erythema nodosum or skin tags, which I've recently learned about. I'm on Prednisone now and the "acne" is rapidly drying up. I'm putting Mederma on them to try and reduce/eliminate scarring. I'm looking into seeing a dermatologist at this point.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 2:13 PM (GMT -7)   
find a really really really really good dermatologist. A lot of them learn in school that you have to do a punch biopsy (with stitches) to identify that they are not anything else (a diagnosis of exclusion).... older folks with more experience, I hear can just look at a little skin at the edge of the lesion with a microscope. It's super hard t find a derm that's ever seen it. Us guys on this thread and whoever joins it, will probably be the largest group of PG sufferers in one place in the history of mankind.

My doc was like NO PUNCH BIOPSY. Bless his little heart.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG. B-12 shots. Juicing veggies!

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