Pyoderma gangrenosum after closure / proctectomy

SaffMember

Hey all, just when you think the journey is over its not ! I am one year post closure / proctectomy. I have been living with a difficult rash in the upper cleft of the bottom - in March it tested positive for staph and strep. Yesterday I finally got in to see a dermatologist and he thinks it is Pyoderma gangrenosum as there is an open ulcer (reasonable size), with granulated tissue around it. Its becoming increasingly uncomfortable to sit down. So on a quick search it seems to me that this isn't a common situation - its more often seen around the stoma.

Has anyone had this in that region?

Do you have any experience with the best treatments?

I am going to start Cyclosporine today (he wanted to start me on Prednisone, but I don't think thats a great option now in isolation ). Also doing salt washes, and advantan cream (corticosteroid).

sigh sleepy

5/14/206:49 PM

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CTB23Member

That sounds terrible. I had Erythema Nodosum prior to my first surgery and that was very painful. Like Pyoderma gangrenosum it doesn’t happen to a lot of people, but can be associated with IBD. I was lucky it went away on its own once I had surgery. Good luck with your treatment.

5/14/207:02 PM

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CatyMember

Has your dermatologist suggested using Protopic (Tacrolimus) ointment with a non-adhering dressing? I have pyoderma gangrenosum at the 9 o'clock position at my stoma site. For many years Protopic has worked well for me. You have to keep on top of Pyoderma and attack it as soon as you notice a tiny ulcer coming or a blood blister appearing at the site. I know that your trouble is at a different location; just thought I would offer what has helped me.

Caty

5/15/206:59 AM

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Scott FMember

Saff, why do you think prednisone would be a particularly poor choice during isolation?

5/15/207:42 PM

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SaffMember

Hey all thanks for your feedback,

HI Caty - Yes I am using Advantan cream which is a topical steroid - different brand. Not on the ulcer - but on inflamed skin around it.

Hey Scott - I just don't find it to have a positive impact on my mental health ( at large doses) so I wanted to try something else first.

I also found this recent paper that did a comparison of pred to ciclosporin and the outcomes were quite similar.. https://www.bmj.com/content/350/bmj.h2958

Hope everyone is going ok with the Covid situations in your country.

Thoughts to everyone. If you do have any experience with Pred or ciclosporine or other meds for this condition please let me know,

rolleyes