If you haven’t done so already, you can read part one and two of my story here.
Dietary Changes & Tears
Immediately following my diagnosis I knew I needed to make dietary changes. I was already eating what most would have considered a healthy diet, but when it comes to autoimmunity there is a lot more to consider. I was familiar with some of the recipes Danielle Walker used to heal her UC and had a couple other “Paleo” cookbooks already on my bookshelf. I really didn’t follow any one particular diet immediately. I aimed to eat based off of the autoimmune protocol (AIP) by eliminating night shades from my diet. Nightshades are a family of flowering plants that include eggplant, peppers, tomatoes, amongst others, that can be problematic for individuals with autoimmune conditions. I also ate 100% grain free, gluten free, and dairy free. Initially I was at peace with my diagnosis. I was hopeful that I could use my nutrition knowledge to heal my body. However, a few weeks into my new eating habits I was hit with a wave of emotions.
I remember the moment like it was yesterday. It was raining and my boyfriend was dropping me off at my apartment one evening. We were sitting in his car and I had a total meltdown. I remember sobbing at the realization that I would need to eat a “special diet” for the rest of my life. I remember saying something about being okay with temporarily eating a certain way, but the idea that at 20 years old, I would have to be on a restricted diet for the rest of my life was enough to consume me. It truly was the first of MANY pitty parties. I share this because in our social media world, I think it’s easy to get the wrong idea about health and wellness experts. The truth is, I truly do love eating nutrient dense foods that support the management of my UC, BUT I have my moments too! I’m human. While there are so many great products and recipes out there for someone with restrictions, there are a few select foods that will never quite be the same. Take for example, donuts.
Growing up we visited Wells, ME every July. Down the street from our rental is an extremely popular donut shop (Hello, Congdons!). They make some of the best homemade donuts I ever had. Unfortunately, to my knowledge no one has perfected the gluten free yeast based donut. Yes, i’ve had the plain cake style donuts and I can confidently report it is just not the same. So if anyone knows of a place cranking out gluten free light and fluffy yeast based donuts, help a girl out! Needless to say, every summer since my diagnosis it has been emotional watching my family enjoy these donuts. They were part of a tradition growing up and you just can’t replace a tradition like that. All this to say, yes sometimes it does suck being on a restricted diet. Yes, sometimes I even get a little angry that I can’t “just eat normal”. I’ve experienced envy watching people enjoy food that is forever off limits to me. Many tears have been shed in the past eight years. With that said, I am so immensely grateful for the health the food that I CAN eat has afforded me. In fact, when people say things, such as “it must be hard not to be able to eat [fill in the blank],” a common response I give is, “yes, it IS hard not to eat [fill in the blank], but it’s even harder being sick with UC”. I believe many others who are using food to heal their bodies would echo the same thing.
Diet Doesn’t Matter
A few weeks following my pitty party I had a follow-up appointment with the gastroenterologist. It was basically a useless appointment. I was well into my new eating habits at this point, but I decided to “play dumb”. I asked the doctor if I should be eating a certain way now that I had UC. He flat out told me that food had nothing to do with UC and I should enjoy whatever food I wanted, because it wouldn’t matter. He told me to just keep taking the four pills a day and essentially sent me on my way. No advice, no support, no explanation of what life with IBD might look like. Nothing. I wasn’t really surprised at his response, and over the last eight years many other doctors have told me the same thing. The problem is, diet DOES matter. We are talking about a disease of the digestive tract. The very tract that food comes in direct contact with on a daily basis. How can it not matter?
I’ve seen first hand how my body responds to less than desirable foods. There is a noticeable difference. I can’t just “eat whatever I want,” because it does have consequences. I’m very fortunate now to have a GI doctor who is at least supportive of my dietary efforts. It wasn’t easy to find her though. I’ve gone through many different GI doctors to find one who is at least supportive and open to my preferences. We don’t always agree 100%, but she has never made me feel inferior for standing my ground. PSA: if your doctor doesn’t jive with your personal health goals, philosophies, or beliefs… fire them. You are the patient, which means you are in the drivers seat. Please do not ever let a doctor bully you into something that doesn’t sit right with you. I once had a doctor use scare tactics to pressure me into a treatment I wasn’t comfortable with. If I had listened to him, I would be typing this without a colon. Advocate for yourself and advocate for your family. No one else will. There are compassionate and educated physicians out there, but it can take some trial and error to find the right one. Don’t settle, this is your health we are talking about!
Remission
Unlike many individuals with IBD, I was fortunate to go into remission within about 6 weeks of my diagnosis. I was taking the Lialda prescription, but I was also working heavily on my diet. It was my goal to come off of the medication as soon as possible. By January 2015 I had moved back home from college and felt confident that I could wean off the medication, and so I did. I had not yet established a local gastroenterologist so this decision was essentially against medical advice. However, I felt strongly at the time that this was the right choice for me. I wasn’t wrong either, as I managed to keep my disease in remission for two and half years medication free. Over that time I also was able to reintroduce certain foods and be a little less strict with my diet. I have always maintained a 100% gluten free diet, but on occasion added in certain grains, such as rice, or dabbled in some pre-made gluten free products. For a long time I almost forgot I even had the illness! That all changed in August 2017 when the stress of planning a wedding reminded me that I did in fact have UC.
The trials and tribulations that followed that year changed my life forever. The days, weeks, and months of sickness I endured are the reason I have finally pursued my dream and started this business. Over the next few weeks I will share how I fought for my health with the hope that even just one person can find encouragement. Whatever digestive issue or condition you are facing, your diet does matter. There is hope for healthier days, but it takes time, patience, and support from qualified practitioners. If even a small part of you can resonate with my story and you are looking to find better heath, please don’t hesitate to reach out. You can always connect with me on social media or schedule a free 10 minute consultation. I’d love to chat about what’s going on and give you some hope for better days!
1 thought on “The Road to UC Part 3”
Oh my gosh! I just found your blog tonight. I’ve had UC for 16 years now and it’s also been a fight that I’d love to share. I am currently experiencing a flare that has me down but know I’ll see the light again. I’d love to chat with you!