My Story

I created this website after enduring what the doctors at UW Hospital Madison described as the most aggressive case of fistulizing perianal Crohn's Disease they had ever seen. Through a holistic approach—including dietary guidance, natural remedies, and mindfulness practices—I’ve found ways to manage this challenging condition.

My personal journey has ignited a deep passion for helping others navigate their health challenges with compassion and understanding. If you’d like to share your experience with fistulizing perianal Crohn's, have any questions, or need support, feel free to message me at the bottom of any page.

I’m continually adding information about treatments and sharing lists of products that have personally helped me along the way. Unfortunately, I’ve encountered several medical professionals who admitted they were unaware this form of Crohn’s even existed. This gap in knowledge means that people with this disease often do not receive the care they need—a heartbreaking reality I’ve observed in my support groups as well.

The Importance of Self-Advocacy

Looking back, it’s shocking how many systemic failures delayed my care. I had to fight for years to get someone to listen to me. If there’s one message I can leave with anyone reading this, it’s this: ADVOCATE FOR YOURSELF. Don’t blindly trust your doctors—read your charts, review your test results, and question decisions that don’t seem right. My ex-wife, now soon-to-be wife, became my fiercest advocate, attending appointments with me and demanding answers when I couldn’t. Without her, I wouldn’t be here today.

If you’re getting sicker and sicker, don’t accept it passively. Advocate for yourself, or find someone who can. Your life may depend on it.

Finally, Hope at Mayo Clinic

After 7 grueling years, countless referrals, and relentless battles, I finally have some small victories. I've been referred to the Mayo Clinic, and my GI appointment is scheduled for March 19th. The UW Hospital labeled my case as the most aggressive instance of fistulizing perianal Crohn’s they've encountered across their colorectal surgery, GI, infectious disease, and dermatology clinics.

Near the Brink

Between Christmas and New Year’s 2025, there were moments when Paula and I truly thought I wouldn’t make it. My heart was so weak that it skipped more beats than it pumped. The thought of dying terrified me—I love life, and I wasn’t at peace with several things in my heart. I wasn’t ready to meet my maker. While my primary care physician was on medical leave, I was denied care and forced to wait for her return. Finally, on January 2nd, I was put on antibiotics, which I’ve been on ever since.

The Pain and the Failures

This has been the hardest uphill battle imaginable. I now know what a “10” on the pain scale truly feels like—sitting on your bed, unable to take another ounce of agony, as an enormous abscess drains through every surgical incision the surgeons made. The infection spread, traveling between muscles and fat layers in my leg. Man-made fistulas were created in attempts to patch earlier, failed fistulas caused by surgical errors.

One surgeon guaranteed that APR surgery would cure me but failed to ensure I was infection-free beforehand. On February 7, 2022, I cultured for staph and Lactobacillus rhamnosus and was placed on IV PICC line antibiotics. Despite signs of infection, they proceeded with a “corrective” surgery, supported by incomplete tests and inaccurate readings, leading to even worse outcomes.

A Cycle of Missteps

By the time of the December 13, 2022 surgery—where they used my quadricep muscle to attempt another flap—the previous failure from unaddressed infection and high WBC counts should have been warning enough. Yet, it proceeded. Time and again, my faith in doctors led me to accept their reassurances without confirming they had done due diligence. This nearly cost me my life. The same bacteria showed up in my cultures years later, proving the infections had never truly been resolved.

Radiologists misreported CT scans, describing enlarged organs or cysts as “normal,” further delaying accurate diagnoses and treatment. My condition worsened, leading to neurogenic spine and bladder issues as the abscess grew. By April 2024, I was placed on hospice care—a path I eventually abandoned because, deep down, I wasn’t ready to give up.

The Regret and Reality of Seeking Treatment

Part of me regrets seeking professional medical treatment after everything I’ve endured. At the time, my life was finally turning around. I had just found the love of my life, my dog Buster brought me joy, and after enduring hell until 2016, I was finally happy. I thought medical care would be a straightforward, one-time incision and drainage, allowing me to move on. I had no idea that I was stepping into the most horrific nightmare of my life, only to be abandoned by medical professionals in 2025.

The Struggle to Get Diagnosed

Getting a diagnosis was an incredibly difficult journey. My second surgeon, whom I saw in May 2018, suspected Crohn’s disease; however, colonoscopies—including at the terminal ileum—came back clean. I had experienced two previous bouts of similar issues, which I self-treated. Reflecting on it now, I would strongly advise against performing incision and drainage on yourself.

Due to a history of sexual and physical assault, I found physical exams of the perineal area to be extremely uncomfortable. It wasn’t until I found my primary care physician in 2015—who supported me not only physically but also mentally and spiritually—that I allowed her to examine the perianal abscess I discovered on January 27, 2018.

Reflecting on Seven Years of Pain

I am writing this on February 27, 2025—exactly seven years and one month after being diagnosed with perianal abscess and fistula in ano. On this day in 2018, I underwent surgery during which the surgeon cut my sphincter muscle too deeply. As a result, I not only had a fistula but also began to lose control of my bowels.

Shockingly, no CT scan was performed before my first surgery. The surgeon blindly drained the abscess and attempted a fistulotomy. A couple of weeks later, I experienced my first case of perianal sepsis. I went into the operating room with two bacterial infections, as my primary care physician had done an in-office incision and drainage and cultured the abscess. However, I came out of surgery with three bacterial infections. I was admitted to a small hospital for IV antibiotics, where my first CT scan revealed old and new fistula tracts.

The Nightmare of Repeated Surgeries

However, when I sought care in 2018, my life was upended. Between January 27, 2018, and December 13, 2022, I underwent 64 surgeries and procedures. The final surgeries were a desperate attempt by my surgeon, who tried to use muscles from my thigh, threading them through my groin, and attaching them to my perineal area. Both failed.

Complications and Betrayal

During the last surgery, my vagina was accidentally cut, and the defect was difficult to repair. When my anal stump was removed, my vagina was again cut, and surgeons struggled to fix the damage. Shockingly, I was never informed about these complications.