My Health Journey Thus Far…

…and Why I’m Still Out Here Talking About Fistulas…

D99C5A91-4F91-4257-A362-F97DD03D1F57This 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 E05A1C1A-D25C-4F97-A767-8AA54570FA9Cafter 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. 93D2F4E3-2A52-4221-B5A2-6665179C9B2E

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.AF86E81B-F5EB-4F7F-815B-241E9A9004AD

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

An Open Letter to All Colorectal Surgeons

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To Whom it May Concern (Are you a colorectal surgeon? You should be concerned):

A while ago I was talking with a close friend (I’ll call her Allie) about her latest experience seeing one of the best colorectal surgeons in the country. Allie’s fistula struggle had been a long one, and was complicated by Crohn’s disease. Her quality of life had been so low that year that she finally decided it was worth it to brave the trip to get the opinion of one of the best.

This surgeon gave her good advice, and did a thorough examination, but what they said to my friend has lingered in my brain for over a year now. They told her about a patient of theirs who had a bunch of kids and over ten setons. They told my friend about how active, productive, and awesome this patient was.

Let me explain how problematic this kind of anecdotal story is. Imagine living with multiple bands hanging out of your ass, all kinds of leakage (hours spent keeping things clean), all of the complications that come with Crohn’s disease, and being in constant pain. Imagine these conditions completely changing your entire life–having to quit a career you loved, being unable to do the things you used to enjoy, coping with the deep depression that comes with being in constant pain…

Now imagine a doctor telling you about a superstar woman, living with similar issues, but just rocking life anyway. Imagine comparing yourself to this mythological creature who has kids and a job, yet somehow has energy to go jogging with her bajillion setons just gently swishing along.

Whatever the intentions of the surgeon telling this story, the result is leaving the patient feeling like, “Oh. Great. So I’m just not trying hard enough. What’s wrong with me? Why can this woman be a superstar, but I am a wreck?” The other consequence of telling a patient a story like that is the patient ends up feeling their doctor doesn’t believe them. If you are telling your patient a story about how amazing this patient is doing, who has been through the same kind of thing you are going through, you are also implying that you don’t particularly believe your patient is as badly off as they say they are.

I spent three years with a fistula, went through eight surgeries (not including EUAs and L&Ds), and I don’t have Crohn’s disease to contend with. I. Was. Wrecked. I lost my job, my social life, and on many days my will to go on. I have spoken to hundreds of fistula sufferers, I run an online fistula support group with thousands of members, and I can tell you that stories like the one this surgeon told my friend are rare. More often than not this condition is debilitating, messy, painful, and depressing. I can also tell you that stories like this are very common–so many fistula patients are living with not just the awful symptoms of having a fistula, but with navigating a health system filled with doctors who won’t believe them about their pain levels. This is UNACCEPTABLE.

I urge you to please BELIEVE your patients. They know more about how their bodies are feeling than you do. You would do yourself and your patients a great service by taking the small steps towards learning what your patient is actually going through, and letting them know that you believe them–believe that their pain is real. It’s not that hard, just imagine having a tunnel that’s eaten its way through important bits, and you’re leaking fecal matter into places it shouldn’t, like your vagina. That’s a good start.

And for the love of all that is holy, do NOT tell them about this one superstar patient you have. Not only is it not helpful, it’s psychologically damaging.

Regards,

Leah R. Chatterjee

(And to my dear friend “Allie,” if you are reading this, you ARE a superstar badass warrior)

New Illustrations

Hi Fistula Warriors,

Starting this post for my fistula medical illustrations. I’ve come a long way in my drawings since my first, rather crude, advancement flap drawing! It’s pretty hard to find  images of surgeries and anatomy that don’t cost a bunch to use, so I’m starting my own collection. You are welcome to share and print any of these for non-profit purposes only, I just ask that you leave my copyright watermark in place. I’ll be adding more over time, so check back for more.

Solidarity,

Leah Chatterjee

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