…and Why I’m Still Out Here Talking About Fistulas…
This July it will have been 10 years since I got the abscess that changed my life. Ten years ago I was about to turn 29, and I was not a stranger to struggle. I had lived with PMDD (premenstrual dysphoric disorder) from the time I was a teenager, so had been through the mill with medications, misdiagnoses, etc my whole adult life. The fistula, however, turned everything upside down for me. I had never had my health taken from me in such a huge way like that before. Suddenly I was hurled into this new reality—a tunnel had formed from my rectum to my vagina, and suddenly my life became managing pain, fecal matter leaking, endless doctor appointments, surgery after surgery, a c diff infection for a year from too many antibiotics, more surgeries…
My fistula was finally fixed in 2013 at Cleveland Clinic by Dr. Tracy Hull. She used a technique that was new at the time—after surgery she kept me in the hospital for 4 days with a wound vac creating an airtight seal on the advancement flap. I am certain the 4 days with the wound vac is what led to the surgery being a success. Unfortunately, my health struggles did not end with that successful surgery. I was fistula free, but rapidly after the surgery my periods got worse and worse. It got to the point that I was having debilitating cramps almost all month long, and none of my doctors were interested in getting to the bottom of it beyond telling me I just had bad periods, and maybe I should try birth control.
I finally saw a naturopath who thought it would be worth it to get an ultrasound to see if anything showed up. The ultrasound showed evidence of adenomyosis (endometrial tissue found in the lining of the uterus that can be quite painful), and showing this to my obgyn provided reason enough to explore the idea of endometriosis (often adenomyosis and endometriosis go hand in hand). I went through 6 months on a drug that mimics menopause, called Lupron, to see if the pain got better. Now, I had wanted a hysterectomy since I was a teenager, so I didn’t want to do the Lupron trial. I was ready to have this all out of me. I had been ready for a long time. But because I was still young, and society is pretty wack, I had to do 6 months on Lupron to prove that a hysterectomy would help me. The Lupron had a lot of really awful side effects, but by the 3rd month I felt like a new person…I felt like I did before my period came and wrecked my life. It was awesome.
So I had the total hysterectomy and oophorectomy, and all of the endometriosis removed in April of 2017. I don’t regret it. I’m finally free of debilitating cramps, awful periods, and crippling mood swings. Unfortunately, shortly after the hysterectomy, I began to have terrible joint pain. It got worse and worse until some days I could barely move. Once again I was back to going from doctor to doctor trying to figure out what was wrong. Had the hysterectomy caused this? Was this a symptom of early menopause? I read about many women having joint pain during and after menopause, and thought maybe that was it. But as the months went by, I became more and more immobile. I would wake up in the morning, and have to crawl to the bathroom because I simply could not stand upright.
After months of seeing different doctors, I finally found a rheumatologist who thought she knew what was going on. She ran some bloodwork, and did a joint ultrasound. My bloodwork came back to show that I was HLA-B27 positive, the ultrasound showed inflammation in my joints, and she felt certain that combined with my symptoms this all pointed to peripheral spondyloarthritis. Around the same time, a dermatologist diagnosed me with hidradenitis suppurativa (HS), an autoimmune issue that is also HLA-B27 related, and causes abscesses and boils. I’m fairly certain this is what caused the abscess that led to my fistula. I spent all of 2018 trying different anti inflammatory medications. I tried Humira, which I had a horrible reaction to, and ended up with awful nerve pain for 6 months. My rheumatologist recently threw up her hands, and thinks I need to see a functional medicine doctor to get to the bottom of my gut issues. I had bad reactions to every medicine we tried.
I have had some success with getting my inflammation out of the danger zone with nutritional changes, but am still in the process of figuring out my gut issues. I am left with a diagnosis of peripheral spondyloarthritis, HS, and IBS-D. I still cope with chronic, and sometimes debilitating joint pain. I am sharing my current health story because sometimes you think fixing one thing will be the end of it, but here I am, almost 10 years later…FISTULA FREE…but still dealing with health problems, autoimmune diseases, and chronic pain. The reason I never stop advocating for fistula patients is simple: Out of all of the health issues I’ve had, that was the hardest one to talk about. It was the most isolating. It was steeped in the most shame. And 10 years later it is STILL not widely talked about. The support group I started in 2012 has grown to thousands of members.
I think it’s important for people to hear that healing is not linear, and sometimes it’s just an ongoing journey. No one fistula journey is the same. Sometimes major surgeries can unleash havoc on your body, sometimes you just have bad luck, sometimes the fistula isn’t the end of your journey, it’s the beginning. I’m not saying you should do this, but I have found gratitude in the journey. As much as I long to be physically well, I know that I would not have stumbled upon my life purposes, I would not have learned that I am an artist, I would not have realized what an awesome advocate I am for awareness. I don’t know that I would have discovered any of that had I not gotten sick. I am not glad I’m sick, I would love so much to have a healthier, more functional body, but I have found some level of acceptance for where I am.
And I will never stop raising awareness for fistulas, especially colorectal ones.
Love and solidarity,
Leah R. Chatterjee