This might be hard to believe, but my life is better with a bag. To really understand how this could be, you would have to understand what my life had become before surgery.
In hindsight, I can trace symptoms back to about 2001 after having a C-Difficile infection. Nothing was ever normal in my gut after that experience, always little symptoms here and there, but nothing ever bad enough to warrant too much concern. In my 20's things progressed, leading me to my first exploration of diet changes. It started with eliminating gluten. This proved helpful for a while. In my late 20's to early 30's I took steps to eliminate further triggers from my diet and started down the slippery slope of believing that I had control over the trajectory of what was to come.
During these years I threw myself into fitness and built a strong and resilient body and mind, adding on 15 lbs of muscle and running half marathons. From the outside I was the picture of health, but on the inside trouble was brewing.
By mid 2020, my symptoms could no longer be ignored. Debilitating menstrual cramps, extreme bloating, eczema and joint pain was becoming my norm. It lead me to seek out help from an a amazing naturopath who is a key member of my team to this day.
When she recommended food sensitivity testing, I was on board given my history of knowing some foods had been triggers for me in the past.
By 2021 I had removed gluten, dairy, egg whites, soy, most nuts and legumes, and mustard from my diet.
Some of the changes helped for a bit, but by November 2021 symptoms were emerging that couldn't be ignored. By November I thought I was seeing some blood in my stool, and by mid December things had escalated to a point that I was sure I would be hospitalized soon. I was passing blood 20+ times a day, often with a decent amount of pain. I was rushed in for a colonoscopy, and on January 1, 2022 the official diagnosis was made - Inflammatory Bowel Disease: more specifically Ulcerative Colitis. I spent 2022 and half of 2023 in brief periods of remission, and periods of worsening flares. When in a flare, my faulty immune system mistakingly perceives a threat, and decides to attack healthy tissues in my large intestine, causing inflammation and ulcers that bleed daily. At the time of diagnosis I felt hopeful. Finally I had an answer to my strange symptoms and now all I had to do was to figure out how to fix it.
By 2022 I had removed all processed foods, most grains, alcohol, refined sugar, fibre (including many vegetables), and seed and vegetable oils from my diet. Every step took me further down the rabbit hole and I hoped a little closer to cracking the code.
My top doc, Dr. J Advised me not to restrict my diet and insisted that diet wouldn't save me from my illness. I didn't believe him at all. I was determined to solve it, without pharmaceuticals (not that we didn't explore pharmaceuticals... but that is another topic for another post). My entire life and career had been built around lifestyle and preventative health, and my ultimate goal was to control this illness with lifestyle.
I am absolutely not knocking any diet protocol that anyone has used that has worked for them, but my truth is that believing diet could save me from my illness caused an extremely disordered relationship with food, and hurt my mental health immensely.
I travelled down the paths of Intermittent fasting, Paleo, Keto, and eventually Carnivore. Did you know there are people (doctors even) out there claiming carnivore can cure auto immune diseases?
By April 2022 most of my daily calories came from grass fed beef and wild game, organ meat, egg yolks, honey and fruit. When it worked (from April to July 2022) it seemed like an obvious solution. When my illness flared up in July I was completely lost. I didn't know if I should give up or double down. Many of my thoughts centered around the idea that this flare up was my fault. I obviously wasn't being strict enough. Social gatherings became my nightmare. I was embarrassed to admit how strict my diet had become, and even more embarrassed to admit that not only was I not strong enough to stick to it, it wasn't working. Food became something I loathed and feared. I grew resentful towards loved ones and the choices they got to make, and the fact that those choices didn't make them sick.
I wanted to punch the next person who told me that their uncle had great success with his colitis just by removing hot wings and beer, and the never ending questions of "but have you tried X, Y, or Z?". I know these suggestions came from places of deep caring, but to me they were reminders of my failures, and evidence that others also thought I wasn't doing enough.
In my last and worst flare (from January to July 2023), it became evident that even the most perfect execution of what I thought I needed to be doing would not hold this illness back. It was slowly but surely attempting to kill me.
I've been fortunate to be able to process much of this with my therapist and dietician. I now know that I wasn't unwell because of the choices I was making, and that not being able to solve my illness through diet doesn't make me a failure.
In the weeks leading into surgery I set the goal of expanding my diet as much as possible, and had great success with this. It allowed me to put on about 10lbs heading into surgery, which I'm extremely grateful for. I am proud to say my last meal before surgery included a pint of Ben and Jerry's, a double cheeseburger, and chicken McNuggets. It felt like a really appropriate final f*#! you to my colon. The diet expansion didn't make things worse that week, but it did feel good in my soul.
By June 2023 I was 6 months into my final flare - I was living in pain every day (leading me to my first use of opioids). I wasn't able to sleep through the night, my 3-hour a day bathroom routine would leave me crying and yelling out in pain, and I was losing larger amounts of blood by the day. At the end of June after consulting with Dr. J, my naturopath, an incredible surgeon and getting one Hail Mary opinion from an immune gastroenterologist at Mount Sinai, the decision was obvious that surgery was my only viable option. Once it was decided things moved quickly. They discovered in surgery that things had progressed further than we thought. I'm so grateful to be able to have gotten in before things got even worse. I don't ever want to know what worse would have looked like.
Things I have learned:
Thank goodness for 15 buffer lbs of muscle - you really never know when you'll need it. Stay strong, friends
Your auto-immune disease is not your fault
If the diet changes you are making aren't helping your illness, it's not your fault
Food was never going to save me from my UC
Eat the foods that make you feel good in your soul
*note* Despite large amounts of daily blood loss, my blood work and in particular my iron and hemoglobin stayed relatively good until almost the very end, and I do attribute this to my intake of red and organ meat, in particular liver. Thank you for that, Carnivore diet.
*note* One week post surgery my blood work was already better than pre surgery ("immaculate" as described by the ER doc), eating a much more enjoyable and balanced diet.
*note* I'm in no way downplaying the importance of proper nutrition as a foundation of health, and will continue to promote eating a wide variety of real and nutrient dense foods. But also, enjoy life and feel good about making choices that feed your soul.
Next up in My Story: Chapter 2: Roller Coaster of Side Effects