For the past 15 years I have battled an invisible disease. A disease that I have openly shared about, posted about, reflected on and even have personalized license plates identifying my struggle. A disease whose symptoms I have tried to ignore, or tried to cure on my own. A disease that has taken away moments of my life, of my children’s lives, of my relationships. A disease that has no cure. A disease that I will have for the rest of my life.
A disease that often other people have great insight into helping me manage. That it must be stress, or food, or exercise. Maybe if I meditate more, or eat a different diet, or manifest an ideal cure within my own mind. Believe me I have tried all of these things. Potions, diets, manifesting a cure, meditation, exercise, strict Paleo, Whole30, probiotics, CBD, the next best thing. What I am left with is the fact that my disease continues to grow, continues to spread. All of the ways that I thought I could keep my symptoms at bay on my own, holistically, have failed. Not to say that they didn’t help me identify some of my own growth areas, learn how to relax and meditate, learn about nutrition and what foods ‘feel’ good. The challenging part of this disease is that it honestly affects every’body’ differently. What might work for one person with Ulcerative Colitis might not work for the next.
In 2010 I was hospitalized for the last time. I had been hospitalized or at least getting some sort of IV fluids, blood transfusions, etc. roughly every six months or so up to that point. It was over a week of IV fluids, antibiotics and my body failing me. I walked out of that hospital with the understanding that gluten has a huge impact on my symptoms and that I needed to seek alternative opinions. My Gastroenterologist at the time agreed that the medicines were not working, I had tried several and my symptoms only continued to flare up. There were no commercials for Ulcerative Colitis at that time, no fancy fix all medications. There was the idea that they could remove my colon and I could potentially move on with a ‘normal’ life. I didn’t want to even consider that possibility. So I ran.
I ran into a consultation with a naturopathic physician, I got more IV’s and promises of remission. I got the information that diet was directly connected to Ulcerative Colitis and I got hope. I began to dive into nutrition, into Paleo, into exercise and figuring out what I could do to listen to my body. I learned to listen. I learned to breath. I also learned to ignore the signs. I saw relief in symptoms, and they would go away, then come back, and go away, they were never consistent. Maybe this inconsistency was remission? There were days, weeks, months where I could begin to live a normal life. Hiking, outdoor adventures, beginnings of feeling normal, then my symptoms would strike back.
The signs that although I was eating healthy, my symptoms were still there. I would brush off with the excuse that ‘mornings are hard for me’. When in reality I was ignoring the symptoms. I tried to mask the constant nagging pain and uncontrollable bowels. I tried to continue to figure this out on my own. I equated my own strength and determination with how well I could manage my symptoms, or ignore them. If I just did X, and did Y better, then I would get past this flare up. I would just get past it.
The past two years I have had a flare up. I tried to pretend I didn’t. I tried counseling to help, thinking that maybe there was a somatic effect connected to my stomach. I learned how to meditate, how to listen to my body, how to relax. I also learned that there are simply things beyond my control. This disease is one of them. I decided to go back to the doctor to see if there was some relief. If I am going to be completely honest those commercials of people enjoying their lives with Ulcerative Colitis really got to me, you know the one where the guy walks right past the Porta Potty to go play in a field.
I finally told my primary care doctor that I wanted a referral. He was surprised, he said that I have been dealing with my disease great on my own. Apparently I also hid my symptoms well from my own doctor. I needed some relief, some help. He prescribe prednisone to help get the symptoms under control. And I waited. Due to covid the waiting game for an appointment seemed insane. Four months later, four months of dealing with pretty awesome symptoms that I could not get under control, I called the GI clinic, I just wanted a consultation. They scheduled my colonoscopy. A person with UC is supposed to have a colonoscopy once every 2-3 years. My last colonoscopy was in 2011. Opps.
I arrived. I met with the doctor, shared my history and my concerns. He shared that there are so many disease management options these days that surgery is honestly the last resort. I was relieved. As we went through the procedure I could see the damage in my body, the angry organs were inflamed. As he investigated he showed me where the disease had spread, where it was considered severe and moderate, that my entire colon was impacted. They took biopsies and then told me they would call me in a few days. That he wanted me to start Imuran, continue with my prednisone, and start Remicade infusions in the next week or so.
The next day as I drove back to the doctor to get blood test so that I could begin my medications I was overwhelmed with the feeling that I had failed. My body had failed. I had tried for so long to manage something that is not manageable without some kind of medical intervention. I longed for my life back, for the spontaneous, impulsive life without the calculated precautions to try and deal with my stomach.
As I reflected, I realized that I have grown in a lot of ways as I tried to manage this disease. I have not failed. My body has not failed. This is just the next step. I will continue to eat in a way that makes me feel nourished, I will continue to meditate and listen to my body. I will continue to dive into all of the things that have helped me on this journey. However, I will also try my best to be a good patient and listen to my doctor. I will continue with hope. Wish me luck as I continue on this path, and maybe, just maybe, I can be symptom free in the next 6 months or so.
Escaping Crazy 