By: Nadia Maffucci Di Rienzo, Founder & Blogger | Gutsy Girl Diaries
I have an autoimmune disease known as Ulcerative Colitis (UC). UC is a form of irritable bowel disease (IBD). UC is limited to the large intestine and characterized by ulcers that develop in the lining. Symptoms of this autoimmune disease include abdominal pain, intestinal bleeding, diarrhea, anemia, and if left untreated, colon cancer.
Here’s how my journey began…
My journey with UC started May 1997. I started feeling symptoms of gastrointestinal discomfort, and as time went on and my abdominal symptoms became worse. My family doctor referred me to a gastroenterologist. After multiple stool samples, blood tests, and a colonoscopy, I was diagnosed with Ulcerative Colitis in July 1997, just 2 weeks before my 15th birthday.
I spent that summer learning about my disease and how to manage my symptoms, which I had little success in. I was prescribed 5-ASA drug called Pentasa which seemed to keep my symptoms at bay and I thought I was in the clear…until a few months later.
In October 1997, I began to have symptoms again. I was constantly crampy with an urge to go to the bathroom. I slept little at night due to my frequent bathroom trips. There was so much blood loss that I had no energy and my quality of life was horrible. I felt so confused and scared. I was very uneducated about UC and how much maintenance it truly required. I went in to see my gastroenterologist who explained to me that I was having a flare up and needed to go on steroids to manage the flare. So I began taking Prednisone, a steroid used to manage UC flares. You need to taper off this drug weekly or bi-weekly depending on your doctor’s recommendation. And let me tell you, it worked like a charm. I was fully better in just 2-3 days. Problem solved, right? Heck no.
The next few years, I went through months of perfect health to months of debilitating flare ups which were managed by Prednisone. I had a love-hate relationship with Prednisone because I learned over the years that this drug is simply a band-aid or quick fix for flares. There are numerous side effects for Prednisone like weight gain, moon face, bone density loss, irritability, depression, and the list goes on. But the fact that it got me back to “normal” so quickly made me “ok” with taking it.
The time of my life…
When I turned 19, something changed. I stopped having flares and for the next 5 years, I was able to live a “normal” life. It was like I never had UC and I loved it. Not many people knew I had UC because it was a disease that was embarrassing due to the nature of the symptoms, so I was glad that I could keep it a secret and do the things that everyone else my age was doing. I went on vacation, I went clubbing with friends, I ate McDonald’s at 3am to help with the worst hangovers. I didn’t do anything to treat my disease. I stopped taking my medication and I ate virtually whatever I wanted.
When I was in my 4th year of university, I had a bad flare up. I went back on Prednisone, but this time, it didn’t work so quickly. My gastroenterologist talked to me about a new class of biologic medications known as TNF-blockers aka biologic agents. First of all, wtf are these drugs, second of all, I’m not taking them. I was scared. I decided to stay on Prednisone for longer and eventually I got better. It was then that I decided to improve my diet and nutrition. I started watching what I ate, limiting alcohol and fast food, and I started exercising. I saw an improvement in my UC symptoms, and I felt great. I worked as a receptionist at a local gym so it felt good to take care of my body with food and exercise and it helped that there was a lot of support around me to keep me motivated and on track.
In May 2006, I got engaged! It was amazing news, I couldn’t have been happier. We set the date for June 2008. We were so happy, but the stress of wedding planning and finding a full-time job took a toll me, and so I flared every few months….again.
The worst was right before my bridal shower. I had to take a week off work to heal. I was so panicked that I wouldn’t make it through my special day, a day that every girl looks forward to. But with the help of good ol’ Prednisone, I was able to make it through. I got married a couple of months later and it was the most perfect day, but symptoms resumed on my honeymoon. I was “managing” and by managing I was in denial that I was in a flare. I couldn’t bear the fact of going through this again. My mind was already spinning because I started to think about married life and if this disease would affect my ability to bear children. It was a whirlwind of emotions. My new husband, aka my first love, my high school sweetheart, was super supportive as he always has been throughout our relationship.
In 2009, I was part of a clinical trial for a biologic drug called Humira. Being in the trial I was scared of the side effects, but I was desperate for relief. I went through all the testing, daily journaling and learning how to give myself injections of the drug. But sadly, this drug didn’t work and I was frustrated. I was in the study for almost a year and I still felt unwell. I was starting to think I was never going to get better. When I ended the study, I went back on Prednisone. It worked. I got out of my flare and my husband and I purchased our first home. We decided we would start trying for a baby and I was excited but scared that I wouldn’t be able to conceive because of my UC. I spoke to my doctors about my plans and prayed to get pregnant.
On December 25 2010, I took a home pregnancy test and it came back positive! Best Christmas present ever! I was overwhelmed with emotion. As the pregnancy went on, I, against my gastroenterologist’s orders, stopped taking my medication because I felt great! I was symptom free, and my gastroenterologist explained that this would happen during pregnancy because of all the hormones. My pregnancy was great and in August 2011 I gave birth to a beautiful baby girl.
The Game Changer…Remicade
In November 2011, still on no meds, I had the absolute worst flare of my life. I was on maternity leave and I tried everything to get myself healed. Because I was off work, I decided that I wouldn’t go on any medication. I would eat a strict diet, use homeopathic medicines, and try to heal my insides naturally. It was a rollercoaster of emotions and symptoms. Some days were great, other days were just horrible. I went back to work in September 2012 and I was not well at all. I was barely eating, having symptoms left, right, and centre, and so I decided to call my doctor and go on Remicade (another biologic drug). Remicade is a drug administered by infusion, so I had to go to a clinic every 8 weeks to receive this medication. And as much as I was against taking medication to treat my UC, this drug changed my life. I was able to have the quality of life I had in my early 20s where I felt like I didn’t have UC at all. The difference from my early 20s was that although I was on medication, I still ate well and exercised. I’m a true believer in that medication can only do so much. We must also be aware of what we put into our bodies as to try to help and not fuel disease.
My Downward Spiral Begins…
The next 5 years were some of the best years of my life. I was able to do things with my daughter I never could before like go swimming and go to all day family picnics where a bathroom was not necessarily close by. I regained my self-confidence and was able to be a better wife, mother, friend, and family member. I had my second child, a boy, in March 2014. I stayed on Remicade throughout my pregnancy, and I didn’t flare up after having my son which I was so grateful. I felt like everything was perfect, my family was complete, we were all healthy.
In early 2017, I began having symptoms and I started to panic. I called my doctor and we booked a Remicade infusion (it hadn’t been 8 weeks). I was confident that I would have my infusion and be good to go. The infusion didn’t take. After one day, I started having symptoms again. After some blood work, it was determined that I had produced antibodies, and therefore, I had become resistant to Remicade. I felt like my world was crashing down. I didn’t know what to do. In the interim of determining what my next steps would be, I went on Prednisone….again. I didn’t want to, but I agreed to for the sake of getting “well”. The Prednisone took SO LONG to work. I was on the same dose for 6 weeks before I could start tapering. I finished my Prednisone in September 2017 and I was symptom free again. I started a new job, I was on no medication, I was watching my diet, I got back into working out, and everything was going great.
In late January 2018, I started to flare again. I called my gastroenterologist and needed to get on some sort of treatment fast. I opted to be part of a clinical trial. The screening period was excruciating as I had to endure multiple lab tests, blood work, and journaling of symptoms in order to qualify.
In March 2018, I qualified for the trial. I began taking the medication (which could be drug or placebo) and in two days…my symptoms improved dramatically. I was eating a strict diet, and as soon as I was able, began exercising. I was taking small steps in regaining my physical, mental, and emotional strength. I wanted to share my story with others. To be an advocate for others struggling with IBD so that they didn’t feel alone, I created the Instagram @gutsygirldiaries and blog, www.gutsygirldiaries.com, where I write about my IBD journey in hopes of raising awareness about digestive diseases, while emphasizing the importance of gut health, and providing a place for my fellow warriors to find comfort and support as we live fearlessly with IBD.
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Where I am today…
Today, 20+ years post-diagnosis, I am thriving. I’m eating well, exercising, and taking my meds. For me, this is a regimen that works, and I have accepted the idea of taking medication. I’m so grateful for the online community I have found since creating Gutsy Girl Diaries. I realize that living with an autoimmune disease like IBD can be a personal and at times uncomfortable experience. But how can we learn if someone doesn’t step up and tell their story? This is why I advocate. Having this online platform to speak my truth and having that truth resonate with someone else and help them is the most important thing to me. Knowing that I am making a difference by sharing my journey is a great feeling.