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Ulcerative Colitis
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Posted 6/26/2014 10:28 PM (GMT 0)
Ok,,,my son has ulcerative colitis,,going on 10 years,,,he is on Remicade,,,it helps a lot.
But....he is getting these weird sores on his arms and legs...He saw a dermatologist today,,,and when my son told him he had colitis,,,he knew exactly what it was...It is a skin condition called Pyoderma Gangrenosum
The dr. told him that the same way he gets inflamation in your colon is the same reason he's getting it on his arms and legs...He gave him a steroid cream,,and a generic for Doxycycline Mono,,,100mgs to help.
Have any of you had this? Now he is more depressed then ever...He has sores and scarring all over his forearms.Does it ever heal??


Gangrenosum
Posted 6/26/2014 11:55 PM (GMT 0)
I dealt with itchyskindrivingmenutso for years till I figured out grains were the cause - and gee, what a coincidence, my uc also went into submission when I gave them the boot !

might be worth a try -
Posted 6/27/2014 3:13 AM (GMT 0)
I've had numerous skin conditions over the years...Peri-oral dermatitis, boils, random rashes and the latest was Pityrasis Rosacea. I've never had PG, however this can can be a common occurrence with An IBD. It's called extra-intestinal manifestations of IBD. You can look this up and see if you find any answers. But from what I understand, PG is more commonly found in Crohns patients but UC'ers have been known to get it as well.
Posted 6/27/2014 2:12 PM (GMT 0)
Thanks for the remarks soystud and Sherry,,,, But Matt's skin doesn't just itch,,, little bumps appear, then pop open and it's a regular nasty sore,,that just will not heal,,,takes a month or more...and if he should get a cut on his leg or somewhere,,,it will NOT heal for weeks and weeks..The Doctor, who is older and very experienced in this,,showed him pictures of other UC patients he dealt with who had it REALLY bad,,,huge big open sores,,terrible...and it all comes from the same reason he has colitis,,,an autoimmune problem..
Sherry,,he definitely has UC not Crohns,,,and it is all mostly located in his descending colon and ileum...
He just had a colonoscopy recently. What annoyed Matt was that when he'd show the GI doctor the sores,,he had no clue what it was and said he never saw it before....You'd think he'd recognize what they were from. But the dermatologist knew instantly as soon as Matt told him he had UC.. He wants him back in a couple months to see if this medicine helps. Anyway,,,just wondered if anyone here on the board ever had this,,,and what was the outcome,,,,thanks,,,Matt's mom
Posted 6/27/2014 3:32 PM (GMT 0)
hmmm, that's very interesting - I've been around here a bit, and to my aging recollection, I've never heard of that among the uc'ers that have posted here over the years -


mine typically are red, bumpy/raised dime sized patches, mostly on my legs and arms -
Posted 6/27/2014 8:38 PM (GMT 0)
ActiveUCer has/had pyoderma gangrenosum. I think I've seen it mentioned here a few other times, but definitely not super often. I believe it's supposed to affect something like 1-2% of people with UC.

That said, if your son's inflammation is only in the descending colon and the ileum, that would be very unusual for UC. That is much more consistent with Crohn's. Typically inflammation in the ileum is only seen in UC patients if their entire colon and rectum are also inflamed.
Posted 6/28/2014 3:18 PM (GMT 0)
Sorry to hear about your son. Could the fact that he is on Remicade cause his wounds to heal up slower?
Posted 6/28/2014 3:32 PM (GMT 0)
"Pyoderma gangrenosum is not related to the activity of the inflammatory bowel disease, and it often occurs in patients whose bowel disease is in clinical remission."

This is ****ed up, it means that you could be in remission and this skin disease can still persist.
Posted 6/28/2014 3:57 PM (GMT 0)
Thanks for all your replies,,,,Matt's last colonoscopy was about 2 months ago,,and believe me,,he is NOT in remission,,,You can see on the photos,,the inflamation in the descending colon and on down to the rest.
When you look up Pyoderma gangrenosum on Google,,,is specifically states that it people with Ulcerative Colitis and Crohns get it and the doctor told Matt that his is a relatively mild case compared to some cases he's seen...but to Matt, he isn't thrilled with forearms with ulcers and scars, and now he is getting sores on his legs too....THe doctor gave him Doxycycline Mono 100mg and a steroid cream,,,we just hope it helps stop them,,,I'm surprised to hear, but happy too,,that there aren't more folks with this on board here.
When Matt first got colitis,,,he had it in his entire colon,,,but when the other meds,,Asacol, Purenithol, and other meds didn't work,,,he tried Remicade about 5 years ago, and has been on it since,,and now he has less inflammation and it's mostly the last part..He still has times when out of the blue he has to rush to the bathroom with an urgentcy and diarrhea...just hits him,,,and has accidents in public places where a bathroom wasn't around....very embarrassing,,, He's afraid to go anywhere for a long stretch of time...always wants to be sure a bathroom is near... At this point, he has no job,,no insurance,,and lives with us. He is 46, smart,,very nice looking,,and if you'd see him, you'd never think he had a medical problem... but inside he is getting more depressed...

Post Edited (cra43) : 6/28/2014 10:07:41 AM (GMT-6)

Posted 6/28/2014 4:52 PM (GMT 0)
He is 46 years old. Why do you talk for him. Why doesn't he joins the board and discuss his issues. If you're going to use a biologic you want absolute remission if not, what is the point of using this powerful med. Has he though about surgery or another biologic?

I have inflammation and accidents here and there. I hold a job and get by. Can't he find a job that can accommodate his issues?
Posted 6/29/2014 8:24 PM (GMT 0)
Yes, I have had pyoderma gangrenosum. Mine is around my stoma, so it's called peristomal pyoderma gangrensoum. When I saw the headline, I know it was either PD or EN.

My treatments have been protect and suppress. In particular, I get steroid injections into the sore. Since your son's is accessible, then the steroid cream is probably sufficient. Having mine around the stoma means that I don't see it unless I do a bag change.

This is basically another immune problem and responds to the same full body immune suppressant treatments. So Humira, Remicade, Azathioprine, Steroids, etc. It sucks and it HURTS. The reason your colon can be ok and your skin still active probably depends on the treatment. If you are only targeting the colon (aka 5ASA, mesalamines, enemas), then you are preventing inflammation in that location only. There's still inflammation in other parts of the body.

He should talk to a GI or a Rheumatologist about it. There are things that can be done outside of just steroid creams.
Posted 6/30/2014 2:13 PM (GMT 0)
Somedude,,,I can understand why you'd wonder why my son doesn't get on here....but..he is a private person,,,and doesn't like to broadcast his problem,,,but as his mom,,,I live with him,,and watch him suffer,,,and get depressed,,,and so I get on to see if anything new is happening in the way of cures or if what he goes through is normal etc...It helps me cope,,,No mom likes to see their kids,,no matter how old..suffer...either physically or otherwise....He had always worked from the time he was16,,and smart..but was very healthy,,,but at 33,,all this started and it totally changed his life...Reading about all of you folks and your meds,,etc,,helps me help him....I learned about Remicade on this site..so it does help.
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