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Cutaneous Crohn's Disease?

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Crohn's Disease
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Posted 11/8/2010 8:14 PM (GMT 0)
I recently saw this clinical trial:

Topical Tacrolimus 0.1% Ointment For Treatment Of Cutaneous Crohn's Disease
clinicaltrials.gov/ct2/show/NCT01233570

I had never heard of cutaneous Crohns. I searched a bit and appears to be stuff like pyoderma gangrenosum, folliculitis, etc. Anybody know more and/or experience this type of Crohns? I had PG during my first flare and still have a scar from it and am curious if anything at all (like, say, chemical peals) diminishes scars.
Posted 12/20/2010 1:51 PM (GMT 0)
I have Cutaneous Crohn's. I'm still not clear on exactly what it is (was just diagnosed) but it's not the same as EN and some of the other skin conditions associated w/IBD (I have EN too). It's sometimes called metastatic Crohn's disease, and it can appear in many places in the body. On biopsy, it has granulatomas, which also often appear in biopsies of the intestine in people with Crohn's.

In my case, I've got painful boils on my butt, had one on my genitals (also very painful), and I just got a new one on my armpit. The treatments aren't very clear.... my doctor wants to try dapsone.

I don't have any experience with PG, so can't help you there.
Posted 12/20/2010 4:14 PM (GMT 0)
sorry for that;
crohn is bad, but that sound way more bad.
hope you find relief soon.
i had EN and it's not really nice. so much pain...
Posted 12/20/2010 5:02 PM (GMT 0)
blueglass, one year when my cd was flareing I had outbreak of boils, bad, they all around my butt and on my thigh, I didn't think anything other than they were boils, but deep, they had to be soaked in hot compresses and then try to drain them, I only would get one at a time, and it lasted for about 4 months, then they went away, but my girlfreind got a few as well, so I thought it was blood connected as far as contagious, you know we both thought maybe sexually transmitted, do you get boils all the time?

Posted 12/20/2010 8:11 PM (GMT 0)
artist guy -- I've had boils before, but only one or two, and they were a bit different from what I had now, they were one at a time, and they cleared up fairly well with bactrim. From what I understand, most boils are staph bacteria, and that's definitely contagious. I don't think what I have now is contagious, although I wonder if it might be contagious within me, i.e I have had them on one side of my butt and then another comes right across, touching a little. I have been doing a lot of hot baths and I've been trying this thing I read online that seems to help -- make a paste of vinegar and flour, put a bandaid over it, and then leave on overnight. Seems to draw them out quicker, but in some places it's hard to get a bandaid to stay on. I've had two that I was thinking of getting surgically lanced because they were so painful, but then they popped with this sort of coaxing..... although takes a long time to drain.
4 months is a long time for boils to last! Did they hurt the whole time?

asdrubale -- I have EN on my legs now too, just a few of them, but they actually don't hurt at all. I wasn't sure at first if they were EN because the info I saw said they always hurt a lot. Guess I caught a break there. Sorry you didn't.... this skin stuff is bad, but partly it's just so freaky.... hoping I can calm down about it .... I mean, at some point I never would have imagined giving myself an enema or carrying extra clothes in case I had an accident..... but I got used to those .... but I have not had much pain with my IBD until now....
Posted 12/20/2010 9:21 PM (GMT 0)
yes my friend I thought the same when after 10 years of IBD I had EN; I was so shocked, every morning "bubbled" a new lesion and I was litterally losing my mind (I did not relate that to Crohn's at the begin, first of all thought they were mosquito bits...) then when at ER they say it was for crohn's I begun regretting my old good plain crohn's...
hope your EN remains not aggressive, I had two large lesion on the right leg, plus a dozen small lesion, and every time I stand up, they hurt much.
Posted 12/21/2010 12:12 AM (GMT 0)
Funny how that works..... when I first got diagnosed, I avoided the skin issues and surgery sections of any books etc on Crohn's.... did not think I had a bad case or that those things could ever happen to me. It is true that for the last few days, it's felt like I would trade these lesions for a few more bathroom trips, but then again, careful what you wish for.....

The dermatologist said that if the EN nodules don't hurt now, they're not likely to start hurting, so that's good. Sounds like yours are gone, hope that's so. I don't think they usually come back....

I get it feeling like you're losing your mind..... where will they come up next? Which ones are going to hurt? Will it ever stop? Kind of your own personal horror movie......

But of course, if you think about it, there are even worse things still....
Posted 12/21/2010 12:18 AM (GMT 0)
are you under any crohn therapy? my en for now is disappeared through the use of prednisone although i'm still in a flare... didn't they advise you pred?
Posted 12/21/2010 12:48 AM (GMT 0)
I started cimzia about 7 weeks ago -- have already been through remicade and humira. I have been on prednisone for about 5 months (and about 8 months out of the last year).... close to the end of tapering off of it..... they don't really want me to go up on pred again, unless absolutely necessary, as I've been on a lot of it this past year (and I'm somewhat resistant to it too).

The drug they are considering for the Cutaneous Crohn's is dapsone. I'm trying to learn more about it.
Posted 12/21/2010 5:05 AM (GMT 0)
Gden I notice you've asked twice about the PG scars. Maybe you could get a skin graft or something but you'd have to find the right doc/plastic surgeon and I kinda of think they'd be really worried about activating it. I, for one, would give anything to have to worry about a scar instead of 10 years of PG. I'd love one. :(
Posted 12/21/2010 5:15 AM (GMT 0)
I have been told that I have a small PG scar, and I still cover that thing daily with a bandaid and creme (I am experimenting with mederma on that one and on another similiar kind of one that I use neosporin on, partically because I had a cast on when it was open. I was orginally told this was not pg, because I get this blood and sinus cavities in the skin that is also suppose to be part of crohns. Personally, I do not think that they really know how all crohns can manifest. Because one derm will say something completely different then another. The only time it really bothers me is when they will not drain and pack them for me, because it has not developed enough yet.
Posted 12/21/2010 5:32 AM (GMT 0)
I tried that mederma and other scar treatments and none of them worked. I asked a derm PA about them and he said they didn't work. One of them even says on the box it's "guaranteed" to work. Yeah, right. My pg scar isn't bad, about the size of a quarter, below my ribs. I can live with that. Not worth surgery. There's a dermatherapy shop near me and they offer all kinds of skin treatments, most of which I don't know much about. Maybe something like laser dermabrasion or something helps reduce scars. But most seem on the pricey side (hundreds of dollars) and I'm doubtful about insurance convering it.
Posted 12/21/2010 6:06 AM (GMT 0)
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