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Ulcerative Colitis
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Posted 10/17/2020 12:11 AM (GMT 0)
Has anyone had a pyroderma diagnosis or wound near stoma? I have a wound near my stoma that I was told today could be pyroderma and that I may even have crohn's. I have doubts but just trying to learn what I can.
Posted 10/18/2020 12:16 AM (GMT 0)
I had "probable" PG following my first surgery to remove my colon. The 2 biopsies were inconclusive but the ulceration responded to a steroid injection, it was injected at multiple locations around the ulceration. It healed for a while and then started spreading again. I have UC. I had the option to start biologics and steroids or proceed with the second take down procedure and move the stoma to the other side of my abdomen. The surgeon and GI thought that removal of the remaining diseased tissue in the rectum may resolve the issue. I opted for surgery in August. I am 8 weeks post surgery and it's finally progressing towards healing. Probably another 4 weeks. I am so sorry you are going through this. The pain is horrendous and I had issues with my appliance sealing because it was directly below my stoma. Let me know what specific questions you have or how I can help. Having IBD is horrible and having PG is hell. It was so painful. I cried a lot and lost even more weight. Hugs!

Post Edited (Mrs. Brady) : 10/18/2020 8:37:42 AM (GMT-6)

Posted 10/18/2020 1:06 AM (GMT 0)
I have questions because my wound doesn't seem to be PG and has healed some. It just hasn't had proper wound care because I have tried to save appliances and kept failing pouches on longer than I should have(output pouching has been perfect but the blood only gives me about 24 hours wear time before it goes through the barriers and I try to last until 48 hours). To make matters worse, I haven't exactly been given much direction by my doctor so I am flying blind and frustrated after he told me the news. It's as if he guessed it might be PG because healing has been slow, assuming wound care was great and it hasn't been.

For example, my understanding is PG doesn't heal without help but mine definitely has. It healed near my stoma a half inch or so. I also understand it to leave crater like surfacing which mine has not. Everyone keeps mentioning the pain I must be in but truthfully I barely notice pain unless the blood breaks through and I let it on longer because of the supply issue. Otherwise, it feels okay. It might be sensitive to touching but that seems expected with a wound.

So my questions. Does PG heal without help? When active, does it just keep spreading similar to something like poison ivy or chicken pox? Does it affect other wounds on the body like hands, legs, back, or does having it near a stoma mean it is only on the abdomen?(other wounds have healed for me on my body and abdomen). What does the fluid that comes out look like, color, consistency, etc??? PG does affect people with UC so it isn't an indication I have Crohn's, right??(my doctor's exact words were that it means I have Crohn's which seems wild to me since he just looked at it for 2 seconds and everything I read says it affects both illnesses).

It just makes me skeptical and want to question his credibility because who says that when everything says both get it? Likewise, he wants to jump to antibiotics and steroids right away but again, there is nothing that suggests I have PG...and he has said crazy stuff before. Dude cost me an extra surgery/recovery time because he insisted there was no reason to wait after surgery to eat. My hernia repair failed and I was rushed to surgery to repair it again so I just can't trust him.

Thanks in advance for any help. I know it is difficult to go through this and I am sorry you had to.

Post Edited (Apache Rose) : 10/17/2020 7:24:02 PM (GMT-6)

Posted 10/18/2020 2:21 PM (GMT 0)
I'll try to answer as best as I can.

Do you still have your rectum? If so, is your UC still active there? Mine was, I was still passing small amounts of blood. The surgeon and GI thought that the active UC could be contributing to the PG. My surgeon also sent surgical specimens to pathology to test for Chrohn's and it was negative.

You really should be treated by wound care. They have all sorts of options to absorb the drainage and products with anti microbial properties that will help with healing. They or your surgeon can also assist with getting your prescription changed so you can get more ostomy supplies. At one point I was changing my appliance daily and my script was increased to have supplies daily.

PG does not equate to having crohn's. It can attack a surgical site and I have never had it anywhere else. My other incisions from surgery healed fine. Mine started 8 weeks post surgery. There is no definitive test for PG. I had 2 biopsies that were inconclusive. Biopsies can make PG worse. It's basically a process of elimination and clinical presentation as well as response to therapies. Mine originally started as 2 small holes that were draining clear fluid. My surgeon applied silver something to them to basically cauterize them. It burned so bad. After that they bled a little. I was having issues with my appliance sealing and was advised to crust them. It then developed into an absess. That's when I started going to wound care and when it got really painful. By that point it was severely infected. I started Flagyl and augmentin and had to do a second round of both to fully clear the infection. The two dots tunneled under the skin due to the infection and had to be packed. After a few days the two holes turned into one larger open sore.

Based on what I read PG can heal on it's own or not. It's unpredictable and like other auto immune diseases can present differently in each person.

Let me know what other questions you have. I'm so sorry you are going through this.

Post Edited (Mrs. Brady) : 10/18/2020 8:37:59 AM (GMT-6)

Posted 10/18/2020 8:49 PM (GMT 0)
I do still have my rectum and I realize that could be active right now. I don't know that it is but it very well could be. They want me to see the GI which is fine.

I think you answered quite a few questions for me and I thank you so much for that. My team hasn't been much help. Specifically, I need to see wound care, get more supplies to change daily, and pause the medications I was prescribed until it has a chance to improve without the medication.

So far, the inflammation they saw Friday was improved as of today and I will be changing daily. It isn't even the possibility of PG that concerns me or maybe having a stoma forever. It is literally that the wound hasn't looked or acted like I have learned PG to behave and it largely hasn't had any time to heal because of the lack of supplies/constant irritation when it fails. I mean, you mentioned tunneling with yours and it needing to be packed. Also, clear fluid. Mine is bright red blood, raised with no signs that it is getting deeper or spreading. It didn't start like PG does. It started when a pouch was removed where the skin came off with the pouch. It was fresh skin on top of an incision that had just healed. Suffice to say, I recognize I could have it but without proper wound care and a more attentive doctor, it seems crazy to try steroids right off to me. Especially since I keep telling them stuff and they haven't listened(it took weeks for them to care I even had a wound).

Thank you again. The information has been invaluable.

How would you rate your pain during the different stages, if you don't mind me asking??
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