Hi Sally,

You may have developed a case a pyoderma gangrenosum. It is treatable. I use an ointment called Protopic with great results.

Caty

Thanks for the quick reply Caty. Is it treatable with steroids or immunosuppressants? Or other drugs? I'm just so scared of using those medications again. And is I going medication forever? Or just until it heals?

Thanks so much
Sally

Hi Sally,

I just saw your reply with questions--sorry for the late response. I believe that Protopic (tacrolimus ointment 0.1%) is a immunosuppressant. It has always done the trick for me, so I can't give you any information about other remedies out there. The moment I notice a change in my skin, I apply a tiny bit of the ointment and a small piece of a Telfa Non-adherent Pad (or something similar) to the wound. Within a couple of appliance changes, it looks a lot better. You will want to change your appliance every 3 days instead of every 5 days to get the ointment on frequently.

I had a slipped stitch next to my stoma after my 2007 ileostomy surgery, and that area is "a fragile skin area" (per my surgeon). Once the ulcer heals from the inside out, I usually stop using the ointment. I continue to have a few episodes of pyoderma gangrenosum throughout the year, but you may only experience one and no others. I'm relieved that the ointment always works for me. The Cleveland Clinic has an abstract about this product and how well it works.

I hope this helps, and don't forget to run things by your ET nurse first. In the future, don't wait to start treatment; you have to jump right on it.

You may not even have pyoderma, that's why I suggest having your stoma nurse take a look.

Caty

Thanks so much caty, I went to see my GP today he said it seems like polyderma, and gave me antibiotics?!? and a steroid based cream, but I will definitely ask about the cream you have mentioned, thank you so much again for all your help, you have made me feel a lot better about it x

Sally

Sally,

Glad I could help. Your GP is good; I was misdiagnosed initially by my local ET nurse at my local hospital. I should have gone to see my colo-rectal surgeon right from the start. Here is the abstract I was telling you about. Dr. Nogueras (author) was my surgeon.

http://www.ncbi.nlm.nih.gov/pubmed/15206967

Topical tacrolimus (FK506) in the treatment of recalcitrant parastomal pyoderma gangrenosum associated with Crohn's disease: report of two cases.

I'm not sure antibiotics will do much good...

Caty

Hi Caty,

I think I spoke to soon about the GP, i went to my stoma nurse again an they don't know what it is?! its not purple or black around the edges like pyoderma, and they don't look like pressure ulcers. Ive got ulcerative colitis or well did have before they removed my colon, could i have chrons instead?? is this sirt of thing related to only chrons?

Sally xxx

Sally,

Not all pyoderma gangrenosum ulcers have purple/black edges. Mine always looks like an ulcer, the area around the ulcer is painful to the touch, and the skin is bright red/pink. I can't answer your question about whether you have Crohn's Disease now or not. That's a question for your doctor. I have ulcerative colitis.

I really can't offer you anything more. You need to proceed with talking to your ET nurse or colo-rectal surgeon on this subject. What I will say is don't wait too long to figure out what's going on.

Caty

Thanks Caty,

I'm seeing my stoma nurse again on Friday, hopefully she can tell me whats going on, and ive been referred to dermatology now also, but I don't know how many weeks that will take :/ but hopefully wont be to long.

Thanks so much for all your help xxx