The list of specialiasts grows with pyroderma gangrenosum diag.

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kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 3/16/2009 5:11 PM (GMT -7)   
I've been dealing with the recent addition to the Crohn's complications the BIG, BAD, PYODERMA GANGRENOSUM.  It snuck up on me and has been one of the most challenging problems of Crohn's.  I seriously thought the bowel issues could not be any more difficult or painful, but I thought wrong!  I've spent two weeks trying to educate myself and get any help dr.s can give.  I've had the emergency room first, infectious disease (with a PICC insertion), daily iv center visits,and today GI dr.  I now find out that my Rheumatologist and a new Dermatologist will join the kimmy team.  I hope that no one out there will get PG, and I am so thankful to the few of you that have PG on the site have been there for support!  It really has been overwhelming, but there is finally light and healing being seen.  I'm finding out there is no quick fix for this and it will take time to get it worked out.  I am so thankful the dr.'s are letting me try to go back to work tomorrow.  I will take it easy and I think the mental diversion and earning money will help the stress level a bit.  I will have to go every morning to the IV clinic for another week and keep the PICC in for at least another 2 weeks.  After that hopefully I can go to oral meds.  We'll have to see what the kimmy team says!
 
love to all,
 
kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade), diagnosed March '09 pyoderma gangrenosum
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 3/16/2009 5:49 PM (GMT -7)   
wow kimmy!! I hope you keep us other PGers posted!! HUGS!! WHen you get around to it, I'd love to hear the specifics of your treatment. Have fun at work. You could use some i bet!

kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 3/16/2009 8:10 PM (GMT -7)   
The PG thing started with a bump on my calf that gradually started getting a red ring around it. My leg began to swell and the bump started developing black on it. I went to the ER where they cut and packed it (OWWWWW) and started me on Bactrim and Lortab. They thought it was MRSA. The next day my whole calf and foot were swollen and the red was about as big as a cereal bowl. I called an Infectrious Disease Dr. I had been to in the past and made an appt. for 2 days from then. By the time I got to her I was really afraid, as I had never been in so much pain. She was mortified and immediately put an IV in and started Vancomycin. I got a PICC line put in at the hospital the following day. She pulled up the culture results from the ER and NO bacteria, she repeated labs. On the second day she started the second anibiotic Fortaz to be infused 3 times a day. I go to the IV clinic in the a.m. and get the 2 antibiotics (2 hours) and then go home with a pump to infuse the other 2 doses. By the third day everyone was concerned as no improvement, so she started 125 mg Solumedrol (steroid) and Lasix for swelling. She mentioned possible PG with my Crohn's history and did a Fungal lab smear. The ulcer as it had become now was about as big as a fifty cent piece with necrotic border all around it. She told me to soak and wipe with a Q-tip to remove dead tissue. I tried and thought I was going to die!! This was around week mark and she was going down on the steroid to 80 mg and then my leg did not like any of this. I started going down hill and the ulcer was getting bigger again. I went in the next day in hysterics from cattle prod/knife like pain and she immediately upped steroids to 250 mg a day and major pain med and Lidicane gel. During this time I had been trying to get educated and everything I found said steroids and biologics. I had been on Cimzia and Methotrexate since July, but she was adament about NO immune suppressants. My GI tract of course was better than it had been in 10 years. Today was day 12 and she stopped the Vanco., Lasix, and Potassium. She talked to my GI and she is letting me resume immuno therapy. I have to stay on Fortaz IV med for another week and keep the PICC line in for at least another 2 weeks. When I saw my GI today he wants to pull my Rheumatologist in to help with prednisone switch and maybe up Methotrexate. He also wants to have me see Dermatologist to get their input on warding off or attacking faster future outbreaks. The ulcer is slowly still growing and is now the size of a golf ball. Where dead skin comes off ulcerization spreads, but much slower now. The redness and swelling are gone. Pain is still there, but managable. I don't know if any of this helped janice, or if you have any suggestions I'm all for them! This has really been scary and overwhelming and alot freaky!!I wouldn't wish this on my worse enemy. I am thankful to those of you on the site who have helped and listened, it really does help to hear from those who have been there. I don't think somebody can truly understand about PG unless you've dealt with it!

best wishes,
kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade), diagnosed March '09 pyoderma gangrenosum
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/17/2009 4:38 AM (GMT -7)   
Hi Kimmy sure hope things continue to improve and thanks for enlightening us on what you have been threw... keep in touch on how your doing... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/17/2009 11:08 AM (GMT -7)   
Kimmy
As I posted in the other thread about PG I have done extensive research along with my Doc of this DD
I had seen every TOP notch specialist like you
Nothing was determined

I fell thru the crack of the health system here I was told that enough times
I was on IV Vanco for mths at a time from my old doc
I now am in a lawsuit with him and other doc's backing me due to total hearing loss in one ear and
I am losing it i other it seems daily

NOW
Vanco is a great antibiotic but not for the long term usage I was put on it ...it is a rare side effect of the med but nonetheless I got it .....
.
My sores/outbreaks always started as a pustule and literally grew over night ......you could watch them grow
I DO have pics posted if I can find them I will put them up ......
It took yrs for me to be finally DX with this PG and many more with Crohns and UC are finding they too are now developing it

As for a PICC line I have had one and my doc will not allow another as he is so worried that a sore will/can start in there as well around Picc Line Area

I KNOW that pain n I would give birth to triplets w/o anything to help lol then go thru what it puts me thru
I always have had first dose of IV meds at hospital and only have nurse come here if I go intrasticcial
Which is not so much anymore
'
ALSO since I have moved from one area to here I have only had few break outs.......
Where I lived before I was always broken out
Stress and trauma do alot to this as well
I am also on MTX Folic Acid and Cefelexain( sp) when in one now
I catch it as soon as possible..Oxycontin 80 mgs 2 times a day and 40 mgs a day with percocets for b/.t pain......

I am so glad you ARE being your BEST advocate here it is truly needed with this DD

Email me if you need to talk okay
Thanks for posting this and keeping ppl aware

LYN
YES branding iron is the way I describe it


 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN

Post Edited (Howlyncat) : 3/17/2009 1:43:16 PM (GMT-6)


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 3/17/2009 12:15 PM (GMT -7)   
Hey everyone, I thought I'd let ya'll know how first day back at work went. I was SO tired and had to go at 7:30 to IV clinic and then straight to work by 8:30. I made it and was so happy to see the kids in my class. I really have missed them and they missed me too. The leg did O.K. , but is sore now that I am home and resting it. The ulcer is more wet today, but I think that is b/c I had to keep it covered instead of letting it stay open to breath. I'm still worried abut the slow taper of Solumedrol and eventual switch to oral Prednisone, but I'm trying to stay positive. Today was a good day and I am very lucky to have a principal and school board who have always supported me. I count my blessings where I can. I wish everyone the best health possible and Thanks for being there for me!!

love to all,
kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade), diagnosed March '09 pyoderma gangrenosum
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/17/2009 12:45 PM (GMT -7)   
So glad you had a good day
now rest n hoping it will dry for you asap.........
lyn
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 3/17/2009 3:09 PM (GMT -7)   
 Hugs to you !!! and all fellow PG sufferers, and I do mean sufferers!!!
 The pain is indescribible!!   I also would love to hear any further treatment plans that you go with or find helpful.  I am always printing off ideas for my drs wink
 I have asked recently for them to get me going again on IV meds (steroids and anribiotics) to help get this thing jump started again, but so far they seem to think the Imuran is enough.  I disagree, I have been on it since July and the wound has increased again, not gotten any smaller.
 I read everything I can get my hands on regarding this stinking PG.
 Take care and keep me posted.
 
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.
 


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 3/19/2009 2:25 PM (GMT -7)   
Hey PGers,
Just thought I'd give an update. I've been back to work for 3 days now and all is going pretty well. I love being back in the classroom and around the kids and my co-workers. It's hard to get going in the morning and I am still going every a.m. to IV infusion center. Today is the step down to 60 Solumedrol so I'm kinda nervous. This is the point last time where my leg flared bad last week. I hope tapering down slower this time will go better, and I can switch to oral steroids by next week. The dr has also now prescribed Silver Sulfadiazine cream for me to apply once a day to ulcer. It's a topical Sulfa antibiiotic to try and prevent secondary infection and keep it soft. It looks almost alien like and is going to leave a heck of a scar, but I'm hopeful it will stop progressing. I get my Cimzia tomorrow and am really interested to see what affect it has on the PG process. I'll let ya'll know!!

love to all,
kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade), diagnosed March '09 pyoderma gangrenosum
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 3/19/2009 2:33 PM (GMT -7)   
go Kimmy go!!! It's really helped me to be religious with the antibacterial ointment, let us know what you think of the siver sulfadine! hugs!
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