January 2023 marks 30 years I’ve had Crohn’s disease.
It’s been a rollercoaster experience these last three decades but I’m so grateful for the ride I’ve been on.
Having Crohn’s has taught me what matters most in life. It’s taught me how to connect with my inner strength. It’s taught me how to sacrifice what I want now for what I want more in the future. It’s taught me how to accept what was, what is and what’s to come. It’s taught me how to be grateful for the life I’ve lived and how to look forward to the journey ahead. Most importantly, it’s taught me how to prioritize myself.
I was six years old when my Grandpa died. He was the only father figure I had ever had. He was my rock. My safe space. Losing him was incredibly traumatic for me. Soon after he died, I began to not feel well. It started with abdominal pains. A few weeks after his passing, I turned seven but it didn’t feel like a time for celebration. The emotional pain was unbearable and soon, so was the physical pain. My abdominal pains got worse. I started throwing up all the time. Then the diarrhea started, and with that, came the blood. It was endless. All night and all day I was running back and forth to the bathroom. I was so scared but I didn’t tell anyone. I wanted to but I didn’t feel like I could tell anyone. So I suffered alone in silence for over a year.
When I did finally tell my mom, I felt nothing but regret. I was diagnosed with severe Crohn’s and immediately put on a high dose of prednisone, along with other drugs. The adults around me often acted as though it was all my fault. The doctors treated me like I was an idiot who didn’t know what I was actually experiencing. They constantly told me what I was feeling was “wrong” or “impossible.” They blamed me for the medications not working and for the new side effects I was now dealing with. They accused me of having eating disorders and for intentionally making myself sicker.
When I think back to how I was treated as a terrified and extremely sick child, I’m disgusted. They put an eight year old on a high dose of prednisone and then tried to convince me that the side effects were all in my head. I remained on prednisone for an entire decade and never once saw any improvements. Instead, I continued to decline.
By the time I was 18, I had had enough. I had had enough of the dismissive asshole doctors talking down to me. I had had enough of the hospital stays and the blood transfusions. I had had enough of the horrible medications that only made me feel worse. And now the doctors that I had zero trust and faith in were telling me that I would need to start having surgeries. They told me that I would probably have to have surgery after surgery for the rest of my life, while also needing to continue to take the medications that had consistently failed me. I said no, in a not so nice way, and walked out on Western medicine.
I quit taking all the medications, which was an adventure on its own, and started to try to figure it out for myself. It was hell. I didn’t know what to do. I tried all kinds of herbal remedies and supplements. None of them worked. Some made me sicker. I continued to waste away and feel as though there was no point to living.
When I moved away for college, I really hit rock bottom. I was all alone, far from my family and friends. I was a shell of a human being. I was so angry at the world and at life. I was so envious of the people around me just living their lives because I felt like I couldn’t really have one.
Out of desperation, I isolated myself and began a major overhaul of how I was living my life. I started keeping a food journal and basically eliminated eating. Everything I would eat would cause me immense pain and send me running for the bathroom. I survived on small portions of white bread, white rice and plain baked potatoes. These foods still hurt but they hurt less than other things.
Over time, my food journal evolved into what I now call a health and wellness journal. It not only took into account the foods I was eating and the reactions I was having to them, but also to my mental health. And my mental health was an absolute mess! I really wished I would have found a therapist or just anyone I felt I could talk to about the pain I was in and the dark thoughts that were ever present in my mind. But I didn’t grow up in a family that talks about feelings so that isn’t what I did.
I changed so much of my life. I put myself on a strict daily schedule that included going to bed and getting up at the same times, eating at the same times and even going to the bathroom at the same times regardless of whether or not I had just come from there. I paid more attention to how I felt around certain people and in certain situations and how foods made me feel.
Gradually, the reactions (emotionally and physically) I would have to things started to lessen. I was able to add in more foods. My body got into the rhythm of my schedule and my urgent, frantic trips to the bathroom started to happen less frequently. I went from being an insomniac to someone who could actually rest and sleep through the night. I started to feel less angry and less hopeless.
After a few years of treating myself like I was all that mattered, I achieved the unthinkable. I did what everyone told me I would never be able to do. I healed my body and I was finally in medication-free remission. I was a whole new person with a whole new life.
I finished my BS in animal biology and went on to get an MS in environmental policy and management. I’ve traveled around the world and have even lived abroad all by myself.
Throughout my years of remission, I still paid a lot of attention to how I felt physically and mentally. I stayed on my daily schedule (for the most part) and listened to my body. I learned to trust my intuition and continued to prioritize myself and my health over all things. I stayed in remission for about 11 years.
And then about a year and a half ago, I felt myself starting to backslide. After a series of traumatic experiences and other non-Crohn’s related health issues, I began to notice little changes in how I was feeling, mentally and physically. I had stopped prioritizing myself and was letting other people’s poor mental health drag me down.
Then my uncle suddenly passed away in January 2022. We were very close. After my Grandpa, he was the father figure in my life. The emotional pain from that experience hurt so bad that there was no way for me not to be physically be taken down by it.
In mid-2022, I found a new GI and told him that I knew I had finally lost my remission. I wasn’t having an actual “flare” but I was experiencing some warning signs, letting me know that if I didn’t start making changes to how I was living and how I was managing my stress, I would end up back where I started. A colonoscopy confirmed that I was now experiencing very mild Crohn’s symptoms.
Of course my new GI wanted to put me on medication but I said no. Instead I eventually found a therapist and started diving back into self-exploration. I started keeping a new health and wellness journal and started cutting out foods that don’t feel good for my body (mostly).
My body feels great most of the time but I see the patterns of poor stress management and shitty eating derailing my efforts. The most difficult part is that the vast majority of the stress I experience now is other people’s stress. My therapist tells me I suffer from Human Giver Syndrome and she isn’t wrong. The last several years have been hard on everyone and I feel the need to be there for people, even when it’s detrimental to my own wellbeing. I have considered going back into isolation and focusing solely on myself but that was a very lonely experience that I don’t care to go through again. So now I need to find a better way to manage the stress of supporting the people I love through their struggles to manage their stress.
While I’m sad and disappointed that my remission came to an end after 11 wonderful years, I’m not really worried. I’ve recovered from far worse and while this detour isn’t ideal, I know it’s only temporary.
My 30 years of Crohn’s disease has taught me to never give up, and neither should you!