I'm looking for anyone who has had a similar experience to trade ideas and information. In 2007 I had a complete colectomy due to UC and have had a successful J-Pouch with no problems until recently. In November of 2010 I went to Hawaii and when I returned home I wasn't feeling well. I saw the Dr. and he thought I was having a bout of pouchitis and so I was given Cipro. While on the Cipro my left foot began to swell and I developed what looked like an enormous blood blister on the inside of my ankle. When it got too big and painful to deal with I finally saw my GP who didn't know what it was. After it burst she sent me to see the surgeon who performed the colectomy. He admitted me to the hospital. None of the doctors who saw me could tell me what it was until my surgeon had his friend who is a dermatologist come in and he knew exactly what it was just by looking at it. Pyoderma Gangrenosum, which is rare but seems to be related to UC or Chrones or other imunological issues. Anyone else out there have a similar experience?

hi emily. i have had pyoderma issues, but not on my legs- around my stoma site. it was not fun! the doctors said the trauma of surgery probably triggered it for me. we tried cortisone shots in the wound, but we eventually got rid of it with drug therapy... i think it was cyclosporine that finally worked for me.

They're treating me with prednisone and wound dressings with ringers solution. It seems to be working but I'm afraid of a relapse.

Hey Emily, I actually had the same thing before I ever had any surgery done. It started w/a couple little red marks but then they swelled into blisters and were super painful. I went to the ER-mistake-the doc there gave me an antibiotic but never did any cultures or bloodwork. So after a couple days of being on an antibiotic and it not working I went to a dermatologist who knew what it was right away. He said that they are common things w/people who have colitis/crohns due to the auto immune disease. I don't recall him giving me anything-it happened about 10 yrs ago. He said they usually appear in threes and then kinda go away on their own. I still have a couple scars on my ankle from them, the one was really big and it was gross when it burst-all this pus came out of it but it did feel better after that and after they all drained they healed up. Hope this helps.

Thanks. That does help. It gives me hope that I won't have a relapse. I have enough scars already.

I have the three pockets rite near my stoma too! Its been a month now, and they are still not healing. I haven't found anything anywhere on them being so close to the stoma except on this site. Anymore ideas on how to get rid of them?

Hello Emily,

I see Dr. Nogueras at the Cleveland Clinic in Weston, Florida. I, too, had a problem with pyoderma gangrenosum. It was at my stoma site. I thought it was an ulcer and went to my local hospital to get help but was misdiagnosed. I guess this was because I only had one ulcer and usually there's more then one area near the stoma that is affected. I tried to take care of the ulcer for over a year until I finally threw in the towel and took the long trip to my surgeon at the Cleveland Clinic. The problem was diagnosed immediately as peristomal pyoderma gangrenosum.

The Cleveland Clinic has had great success with the use of Protopic Topical Tacrolimus 0.1 Ointment. The link is below. I had immediate improvement after using this ointment. I was told to mix a small amount of the ointment with orabase gel (over the counter for canker sores). I apply the mixture with a tongue depressor to the infected area. Then I cut a small circle piece of "Kendall Telfa Non-Adherent Dressing" to the ulcer area and then apply my flange (I know your ulcer is on your leg). The Cleveland Clinic was correct; this really works. I am all healed up at that spot but am now working on getting rid of the scar left behind, which may not go away.

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

I hope this information helps people who are suffering from pyoderma gangrenosum, especially with peristomal PG when it is very difficult to keep a flange on because of the oozing wound and the pain.

Caty

Had the same thing, but it was a spot by the stoma. I used Hydophera blue, which is a dressing you put on the spot, worked like a miracle. Had to get a prescription from the doctor. It relieved the pain almost immediately. Could not believe how fantastic it worked to heal the pyoderma. this was over a year ago, and haven't had any problems since. Took a couple weeks to heal.