As I (Jesse) approach the one-year anniversary of my healing journey with chronic Lyme Disease and my seven-year journey with Ulcerative Colitis, I realize that I have never shared my full story about living with autoimmune disease. I’ve really wrestled with this and have tried to figure out why the thought of sharing my story feels so uncomfortable: I am still very much a work in progress.
For years I always thought that I couldn’t share my story until it had a nice, happy ending. I mean, that’s what stories are right? Writing that has a beginning, a middle and an end… but the truth is, I’m still writing my story and always will be. When it comes to healing, and taking care of my body, my mind, and my spirit I will never be done. I think that’s what living with autoimmune disease means, signing up for a lifetime of story writing. Don’t you think?
Growing up, I was what you would call a “sick child”. I got colds and sinus infections frequently, I had seasonal allergies, chronic post nasal drip, and a whole spectrum of seemingly unconnected and unexplainable digestive symptoms: constipation, diarrhea, indigestion, acid reflux… I was just never fully well. When I was in high school I was diagnosed with gluten sensitivity, but even after removing gluten from my diet I only saw marginal improvements.
I was diagnosed with Ulcerative Colitis (UC) in March of 2013, on my spring break from college… What a fun way to enjoy spring break right? In the six months leading up to my diagnosis I experienced, what I now know as, two UC flares. Symptoms like diarrhea 10-15 times a day, an inability to eat, nausea, abdominal cramping, weight loss, and black bleeding in my stools. At the time of my first flare I wrote it off as stress. When the second one came along, I knew something was wrong and I needed to have a colonoscopy.
I was 19 and a sophomore in college at the time I was diagnosed. I was not in a place emotionally or mentally to be able to handle this life changing diagnosis. So I spent the first year of my healing journey simply taking the medications my doctor prescribed and pretending like none of this was happening. Unfortunately, my body caught up with me and I couldn’t ignore my disease anymore.
The Early Years
A year after I was diagnosed, my symptoms just weren’t resolving and were getting worse. At the time my sister (Samantha), who had also been diagnosed with UC about a year prior, had begun utilizing the Autoimmune Protocol (AIP) to address her symptoms and had seen a lot of success. So, I decided to give AIP a try.
In the first few years of following AIP, I was able to live about 80% symptom free. I still had a flare about once a year, but it typically resolved in a matter of weeks with help from steroids. Overall, I was able to regain my quality of life. I finished my degree, got married, and started a career. I was living a functional life, but I just could not resolve the remaining inflammation. After about four years, my symptoms started to change and get worse.
Up to that point, I was used to having my annual flare in May with the usual symptoms like diarrhea, weight loss, and bleeding and after a few weeks on steroids everything would resolve and I could resume life as normal. In 2017 I started experiencing symptoms on a daily basis, but rather than being the severe symptoms I experienced once a year, they were more moderate but constant. My stools were looser, I had diarrhea but only had bowel movements 4 – 6 times a day, I saw bleeding, but it was red instead of black, I had terrible urgency that made me poop my pants more often than I would like, and frequently I had bowel movements where all I saw was mucus.
The Scary Years
It was scary. Everything that I knew about how to care for myself suddenly wasn’t working. I started to spiral. I had been following the strict elimination phase of AIP for over four years. I had no flexibility in my life. I felt like if I stepped one toe out of line, my body would just crumble into pieces. Every medication option I tried wasn’t working (mesalamines, steroids, immunosuppressants). I didn’t have a strong healthcare team, so I felt like every avenue of healing had failed me. Whether I realized it or not, I fell into what I now know as “Diagnosis Related Depression”.
I isolated myself. I only left the house for survival obligations, like work and grocery shopping. I was angry all the time. I was filled with self-doubt and loathing. I was mad at God for making my body this way. I was mad at the world for not responding to me in the way I needed. I was mad at my friends for not saying the right things. I hated my body for betraying me. I became so obsessed with eating the right things and managing my out-of-control symptoms that I completely and totally lost myself in my disease. I forgot who I was.
In January of 2019 I had started seeing a new gastroenterologist who performed my third, and worst ever, colonoscopy. My UC had spread and damaged about 80% of my large intestine. She basically said that unless I did something to treat this inflammation, I was going to lose my colon. At that moment, I completely fell apart. Everything I had been afraid of happening was happening. A few months earlier, I started working with a Functional Medicine practitioner who diagnosed me with Chronic Lyme disease among other chronic bacterial infections and heavy metal toxicity. His ideology was that until these things that have been confounding my healing for years are dealt with, I will have a very hard time healing my UC.
I knew that I needed to give the Functional Medicine approach a fair shot before resorting to surgery, otherwise I would regret it. My gastroenterologist said I had time to pursue this approach, so I went for it. I literally packed up my life and moved to North Carolina for 9 weeks to be closer to the Functional Medication practice and fully immerse myself in treatment. I won’t get into the nitty gritty of that treatment process now, but you can read more about it here, here, and here.
The Current Years
Since then, I’ve tried several different Functional Medicine treatment approaches for both my chronic infections and my UC and I’ve seen a lot of success. After pursuing those treatments and working on my digestion, I reached a place of living about 90% symptom free. I started seeing a new gastroenterologist who has a working relationship with my Functional Medicine doctor, and for the first time in 7 years I have a strong and collaborative treatment team!
I am still utilizing a Functional Medicine approach, but have also incorporated more conventional treatment in the form of a new Biologic infusion medication. And folks, I am happy to report that I am currently living 100% symptom free! Granted, it’s only been a few weeks, but I’m hopeful that I’m on the road to a sustainable symptom-free life with my large intestine intact!
What I’ve Learned
In a nutshell, I’ve learned to stop fighting my autoimmune disease. I spent years just fighting against this lot I’ve been given in life, trying to find a “quick-fix” or “magic bullet” to make all my health problems go away. It wasn’t until I took the time to relearn who I am now, Jesse living with UC, that I felt like I could finally sigh of relief. Whether we like it or not, living with chronic illness changes you. It takes some serious time to process and adjust to this new life, new body, and new identity you’ve been given.
I’ve also learned that reaching optimal health requires a multifaceted approach. It wasn’t until I embraced ALL the aspects of a healing lifestyle that I saw significant improvements in my autoimmune disease. Nowadays I embrace a whole arsenal of tools I use to manage my health. Things like: diet, medication, movement, a strong health care team, infrared sauna, acupuncture… all of these things just enhance my quality of life, allowing me to live my best life and live into the person I want to be.
And I have to say, I am loving myself now!