This story represents a composite of common IBD experiences and is presented to help readers feel less alone in their journey.

The Wound That Wouldn’t Heal

I stared at the angry, purple-edged crater on my shin in disbelief. What had started as a tiny scratch from my garden gate three weeks ago had transformed into something that looked like it belonged in a medical textbook—a gaping, weeping ulcer the size of a silver dollar with raised, violaceous borders that seemed to mock every attempt at healing. The wound care nurse at my doctor’s office had just finished changing the dressing for the third time that week, her furrowed brow telling me everything I needed to know: this wasn’t normal.

“Have you been picking at it?” she asked gently, though I could hear the confusion in her voice. I hadn’t. In fact, I’d been religious about keeping it clean and covered, following every wound care protocol to the letter. Yet somehow, impossibly, it was getting worse—deeper, wider, more painful with each passing day.

What I didn’t know then was that my skin had become an extension of the inflammatory battlefield already raging in my intestines from Crohn’s disease. This wasn’t just a wound that wouldn’t heal—it was pyoderma gangrenosum, one of the most challenging extraintestinal manifestations of IBD, and it was about to teach me that inflammation doesn’t always stay where you expect it.

The Beginning: When Everything I Knew About Healing Was Wrong

The scratch happened on a Tuesday morning in my backyard. I was rushing to get my tomatoes watered before work when the metal gate caught my shin—just a surface scrape, nothing more than a minor annoyance. I cleaned it with soap and water, applied some antibiotic ointment, and thought nothing more of it.

By Friday, I knew something was wrong. Instead of the expected scab formation, the tiny scratch had developed into a small, deep pit surrounded by angry red skin. My primary care doctor took one look and prescribed oral antibiotics, assuming it was infected. “Keep it clean and dry,” she said. “It should clear up in a week or two.”

But pyoderma gangrenosum doesn’t follow normal healing rules. Over the next two weeks, despite religious adherence to wound care protocols and a full course of antibiotics, the ulcer grew larger and deeper. The edges became raised and purple, rolling inward like the rim of a volcano. The pain was unlike anything I’d experienced—a burning, gnawing sensation that seemed to radiate from deep within the tissue.

What made it even more frustrating was that my Crohn’s disease had been relatively well-controlled. I’d been on adalimumab for two years with good results, maintaining remission and living a relatively normal life. The idea that my IBD could manifest on my skin was completely foreign to me. Like many people with IBD, I thought inflammation meant intestinal symptoms—cramping, diarrhea, bleeding. I had no idea that my immune system could turn my skin into a battlefield.

The turning point came when my wound care nurse mentioned the unusual appearance to my gastroenterologist during a routine coordination call. “The edges look violaceous and undermined,” she reported. “It’s not responding to standard wound care, and it’s showing pathergy—getting worse with each debridement attempt.”

The Struggle: Fighting an Invisible Enemy

The diagnosis of pyoderma gangrenosum felt both validating and terrifying. Finally, there was a name for what was happening to my leg, but the treatment implications were daunting. My dermatologist explained that this wasn’t a infection or a simple wound—it was an inflammatory skin condition directly related to my Crohn’s disease, requiring systemic immunosuppression rather than traditional wound care.

The most challenging aspect was unlearning everything I thought I knew about wound healing. Standard wound care practices—aggressive cleaning, debridement, keeping wounds dry—were actually making my pyoderma gangrenosum worse due to the pathergy phenomenon. Every time healthcare providers tried to remove dead tissue or clean the wound aggressively, it triggered more inflammation and expansion of the ulcer.

Coordinating treatment between my gastroenterologist, dermatologist, and wound care team became a complex dance. My adalimumab dosage needed to be optimized not just for my intestinal Crohn’s but also for this skin manifestation. We added topical tacrolimus to the regimen—a delicate balance of providing enough immunosuppression to calm the inflammatory process while avoiding over-suppression that could lead to infection.

The social impact was profound. The ulcer was on my shin, impossible to hide completely even with long pants. The dressings were bulky, and the constant seepage meant frequent changes throughout the day. I became hypervigilant about protecting my legs from any trauma, knowing that even minor bumps could trigger new lesions due to pathergy. Simple activities like gardening, playing with my kids, or even walking through crowded spaces became exercises in careful navigation.

Sleep became elusive. The pain from pyoderma gangrenosum is uniquely intense—a combination of burning, throbbing, and sharp shooting sensations that seemed to worsen at night. I found myself sleeping with my leg elevated, surrounded by pillows to prevent accidental contact that might trigger more inflammation.

Perhaps most challenging was the emotional toll of having a visible manifestation of my “invisible” illness. Crohn’s disease had always been something I could hide when I chose to, but pyoderma gangrenosum announced itself to the world. Well-meaning friends and family offered advice about wound care that didn’t apply, not understanding that this wasn’t a normal injury that would heal with time and proper care.

The Turning Point: Finding the Right Balance

The breakthrough came six weeks into treatment when my healthcare team finally achieved the right balance of systemic and topical therapy. My gastroenterologist increased my adalimumab frequency from every other week to weekly, while my dermatologist prescribed a compounded topical preparation combining a potent corticosteroid with tacrolimus.

More importantly, we developed a trauma-avoidance strategy that became second nature. I learned to recognize the early signs of pathergy—increased pain, redness, or swelling after any skin contact—and adjusted my activities accordingly. This meant investing in protective clothing, modifying my exercise routine, and being incredibly careful about leg positioning during sleep.

The wound care protocol was revolutionized based on pyoderma gangrenosum-specific principles. Instead of aggressive cleaning, we used gentle saline irrigation. Rather than allowing the wound to dry out, we maintained a moist healing environment with specialized hydrogel dressings. Most importantly, we avoided any unnecessary manipulation or debridement that could trigger pathergy.

I also connected with other IBD patients who had experienced pyoderma gangrenosum through online support groups. Hearing their stories and learning their coping strategies was invaluable. One woman shared her technique for protecting her legs during sleep using specialized leg protectors designed for elderly patients. Another described how she modified her wardrobe to accommodate bulky dressings while still feeling confident and professional.

The psychological support was equally crucial. Working with a therapist who understood chronic illness helped me process the additional layer of complexity that pyoderma gangrenosum added to my IBD journey. I learned that it was normal to grieve the loss of my “hidden” illness and to feel frustrated about this visible reminder of my condition.

Living Well Today: A New Normal

Today, eighteen months after that initial scratch, I’ve achieved a stable remission of both my intestinal Crohn’s and my pyoderma gangrenosum. The ulcer has healed, leaving behind a characteristic atrophic scar—thin, white, and slightly depressed—that serves as a permanent reminder of this chapter in my IBD journey.

My current treatment regimen reflects the interconnected nature of my conditions. I continue weekly adalimumab injections, which manage both my intestinal inflammation and help prevent new pyoderma gangrenosum lesions. I maintain a topical tacrolimus prescription for immediate use if I notice any suspicious skin changes, and I have a clear action plan with my dermatologist for rapid intervention if new lesions appear.

Daily life requires ongoing vigilance but has become manageable. I’ve invested in high-quality protective clothing for activities that might pose trauma risks. My home and workspace are arranged to minimize accidental bumps to my legs. I carry a small emergency kit with gentle wound cleaning supplies and protective dressings, just in case.

Perhaps most importantly, I’ve learned to advocate for myself in healthcare settings. When I need medical procedures or even routine blood draws, I inform providers about my history of pyoderma gangrenosum and pathergy. This prevents well-meaning healthcare workers from inadvertently triggering new lesions through aggressive tape removal or unnecessary skin manipulation.

I’ve also become an informal educator in my IBD support group, helping newly diagnosed patients understand that extraintestinal manifestations like pyoderma gangrenosum are real, treatable aspects of IBD that require specialized care coordination. Many patients don’t realize that their skin symptoms could be related to their intestinal disease, and early recognition can prevent the prolonged suffering I experienced.

A Message of Hope: You’re Not Alone in This Battle

If you’re reading this because you’re dealing with suspicious skin ulcers alongside your IBD, please know that you’re not alone, and this is not your fault. Pyoderma gangrenosum is a recognized extraintestinal manifestation of IBD that affects up to 10% of patients with Crohn’s disease or ulcerative colitis. It’s not caused by poor hygiene, picking, or inadequate wound care—it’s an inflammatory condition that requires specialized treatment.

The key lessons I’ve learned may help you navigate this challenging condition: First, early recognition and proper diagnosis are crucial. If you have an ulcer that isn’t healing normally, especially one with violaceous, rolled edges that seems to worsen with standard wound care, advocate for evaluation by a dermatologist familiar with IBD-related skin conditions.

Second, successful treatment requires coordination between your gastroenterologist and dermatologist. Your IBD treatment may need optimization to address both intestinal and skin manifestations. Don’t be surprised if this means adjusting medications you thought were working well—sometimes we need more aggressive systemic therapy to achieve control of extraintestinal manifestations.

Third, trauma avoidance becomes a way of life, but it doesn’t mean living in fear. With proper precautions and protective strategies, you can maintain an active, fulfilling life while minimizing pathergy risks. The initial adjustment period is challenging, but most patients adapt well to the necessary lifestyle modifications.

Finally, remember that pyoderma gangrenosum, while serious and challenging, is treatable. With appropriate systemic immunosuppression and specialized wound care, most lesions can achieve healing. The scars may remain, but they become badges of survival rather than sources of shame.

Your skin may have become an unexpected battlefield in your IBD journey, but with the right treatment team, proper understanding of the condition, and appropriate self-advocacy, you can achieve healing and reclaim your quality of life. The inflammation that affects your intestines doesn’t have to define your entire existence, and neither does its manifestation on your skin.