• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Our Story and a Plea

Hello. My name is Mary Beth Feldman. My husband has Crohn’s disease. He found out he had it through a secondary disease called pyoderma gangrenosum which he developed while trying to build our house on his own. (This was before we were married.) He worked full-time, would come home, and work late building the house in semi-rural Alaska. He was under pressure to get it at least under roof and heated before the Alaskan winter set in. He was living in the house while finishing it when he became deathly ill. He would have died, if not for a 16 year old neighbor boy who stayed the night with him and called for help when he could not rouse him in the morning.

While trying to diagnose the pyoderma gangrenosum, it was discovered that Bob had Crohn’s disease. His mother had also suffered from it and died from a perforated bowel while on massive pain medication for breast cancer.

Bob and I met on the internet while he was still recovering from a neck injury incurred in a fall while still recovering from the pyoderma. One of the areas effected was his leg. He moved to Maryland, and we were planning on getting married on July 10, 2004. Unfortunately, another Crohn’s flare up landed him in the hospital. It was quite severe to the point that doctor’s thought he had a tumor in his colon. We ended up getting married 2 weeks later than planned.

Bob’s health has been, for the most part, stable since then. He will occasionally have mild flare ups which require lots of tests. He is on immune suppressants as well as Asacol. He also continues to take pain medication for the severely herniated disk in his neck.

He continues to work full-time as a college instructor. However, our house is still not finished. We can’t afford to hire anyone to do major renovation or finishing projects, so have to work on it slowly ourselves. Because of Bob’s health, “extra” work has to be done at a very slow pace. We have a four year old child, so I can’t do it alone.

Right now, we are trying to win a local contest to renovate our very patched together kitchen. We only have a few days left to get as many votes as possible. It really is important that we have a kitchen that is easy to keep clean and as sterile as possible. I am asking anyone out there to please vote for the Feldman kitchen in the AlaskaBuild.com contest. Here is the link. It is not a scam. There is no spam involved. Just a lot of hope. Thanks!

alaskabuild.com/wkc We are entry #3 under my name, Mary Feldman
 

DustyKat

Super Moderator
Hi Mary and :welcome:

I'm so sorry to hear about Bob and what he has been through but it's good to hear he quite stable for some time now and I hope it stays that way for a long time to come. This is a wonderful place for support and info and there are others on here that have PG.

I hope you win the contest, fingers and toes crossed!

:goodluck:

Welcome aboard! :)
Dusty
 
hi and welcome =]

i will go vote for you after i write this, you definitly deserve that. i hope it works out for you.

i have also been diagnosed with PG, though a slightly different version. i was dx with crohns 11 years ago, but never had a PG issue until april '09 when i had ileostomy surgery. PG can take a peri-stomal form (the stoma is the end of the ostomy), meaning the PG wound forms around the stoma/surgery area. it took a few months to get it dx'd properly, but the wound was there from day 1 after surgery, slowly necrotized (whatever that word is) from there.
then i had a few wounds pop up on my legs as well, 3 spots bad enough to leave scars but quite small and healed up with just one dose of steroid injection.
has your hub ever gotten steroid injected directly into the wound? for me that was monumental in treating the wound on my stomach as well.
right now, i still have a rather large wound on my stomach around my stoma, BUT the PG is not currently active, so thats great. my body is just having trouble healing the leftover wound, but no NEW skin is being destroyed.
like i said, the roid injections were the main treatment for it as well as ive been on Cellcept (mycophenylate) for it.
i know you said your hubby takes pain meds for his neck, does he need to take any for his PG as well? does it cause him a lot of pain? my experience with it, and others ive talked to is that it hurts like hell, i ended up on a fentanyl patch which really really helped me get thru that. ive been off that drug for many months now as the pain has been better since the active PG calmed down, now im just on a few percocet a day whenever its needed.

dunno how helpful that all is but i figured id just give you a recap of my experience with this crap =/ it really is nasty nasty stuff....

there was a couple that used to be members here, Mike and Kim....Mike has crohns and been dealing with terrible TERRIBLE PG for a really long time now. Kim is his wife and knows this disease inside and out. he too suffers with wounds on his legs....
they are no longer on this forum but if you would be interested in talking to them, im still in touch with them via other websites and would be happy to pass along your contact info, email or whatever.

i just went back and re read your post, how is his PG currently? is that stable as well as the crohns? just curious.

best to both of you! and again welcome, stick around theres lots of amazing info and people around here.
 
Thanks for the encouragement and votes.

@kello82
His pg is o.k., but there are occasional phantom pains in his leg area. There was nerve damage there after the wounds were cleaned out over and over. I forget how many surgeries he had.

They had a difficult time diagnosing it. The hospital here in Alaska had never seen anything like pg and, at first, they thought he had been bitten by a spider and treated it as such.
 
I will see if I can get him to come on here and give you more info on the p.g. It was before I met him, so I really only know the basics.
 

Astra

Moderator
Hi Mary & Bob
and welcome

You've certainly been thro the wringer!
hope things are settling down for you both now, good luck with the contest, you deserve to win!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx
 
Top