Your doctor has told you you have ulcerative colitis (UC), and now you’re learning about the treatment options and lifestyle tweaks that can support your new diagnosis. Along with this medical knowledge, it’s helpful to hear from those who’ve gone through the same thing. Three people look back on their years since their diagnosis day and share practical insight and hope for what’s to come.
When and How Were You First Diagnosed With Ulcerative Colitis?
Lyndsey Wilson, 38: I was diagnosed with ulcerative colitis in 2012 at the age of 24. I had my first flare-up in March of that year, but I wasn’t diagnosed until September. I got really sick with this second flare-up. I was no longer able to keep food down and was hospitalized. After about five days in the hospital, my colon had calmed down enough from steroids and new medications, so I was released and began navigating life with this new diagnosis.
Danielle Brown, 32: I was only 14 years old when I got my UC diagnosis. I started getting sick when I was 13 but was very embarrassed about the symptoms I was having — really bad abdominal pain, lightly bloody, loose stools, and going to the bathroom about 10 times a day. I tried to keep them hidden from people. But my mom noticed. I was in such a bad state that she took me to the hospital. Even though the hospital dismissed my pain as a urinary tract infection (UTI), my mom persisted and drove me to a children’s hospital the next day. That’s when I got a colonoscopy and the correct diagnosis, and started my treatment path.
Anita Ford: I was diagnosed with ulcerative colitis 17 years ago. I noticed a troubling pattern – I was getting sick multiple times each day and was losing weight rapidly, despite my already-thin frame. I knew something was wrong, but the diagnosis didn’t come easy. It wasn’t until my hemoglobin dropped to dangerously low levels that I was hospitalized for five days, receiving multiple blood transfusions before finally being diagnosed with UC. It was my first time being hospitalized, and I clearly remember being told that I would be placed in the ICU and might not survive the night. Yet here I am today: Still fighting, still standing strong!
What Has Your Treatment Journey Looked Like Since Your Diagnosis?
Wilson: Right after diagnosis, I was started on treatment to lower inflammation in my colon. After a few years, a severe flare led to hospitalization, and my gastroenterologist (GI doctor) switched me to a biologic, which I injected myself every other week for a year. Eventually, side effects (scalp psoriasis) meant I needed to stop that as well.
In 2017, after another serious flare, I also stopped my previous medications and started a biologic. That worked for about a year, but then I had a flare that even prednisone couldn’t control. My body had stopped responding to steroids.
After trying other medications without success, we decided to remove my colon. It was the best decision I’ve ever made. I had a total colectomy in July 2019, followed by a proctectomy with ileoanal anastomosis in October 2019, when my surgeon created a J-pouch from my small intestine. I kept my ostomy bag to let the J-pouch heal before reversing the ileostomy. I developed adhesions that required surgeries in October 2019 and October 2020. My ileostomy was finally reversed in July 2022, and I’ve been living with my J-pouch since.
Brown: I started trying different medications right away, including steroids. For about a year, each medication would work in the beginning, but eventually my body would get used to them, and all my symptoms would come back. So, it became clear that the best option would be surgery to remove my large intestine because it was so inflamed. During my surgery, they were able to create an internal J-pouch made from my small intestine. I’ve had pouchitis (inflammation of my J-pouch) a few times, but other than that, everything has been fine since that surgery.
Ford: At first, I was treated with multiple rounds of steroids and other drugs during flares. I was then switched to several drugs and a biologic. When these didn’t work, I sought out specialized hospitals, where I began treatment with another biologic every four to six weeks. It helped for about two of the four weeks, but I often still felt sick.
Eventually, I developed serum sickness and antibodies, causing heart palpitations, severe fatigue, loss of appetite, and allergic reactions. Doctors took me off the biologic I was on. They put me back on one of my first treatments, continuing to adapt my treatment as needed. I’ve also taken iron infusions for anemia and steroid treatments for skin conditions caused by UC.
What Does Your Life Look Like Now, a Decade-Plus After Diagnosis?
Wilson: It’s been different in that I’m more aware of where the bathrooms are wherever I go. I’m very in tune with my body and notice any changes in bowel movements that could be a sign of a flare-up. I have become stronger and more resilient than I was before my diagnosis. I’ve also found a great community of others with an inflammatory bowel disease, such as UC or Crohn’s, on Instagram.
Brown: I have given birth to two beautiful children, a son and a daughter. I’m stronger, and my family is stronger because of my ulcerative colitis. Most amazingly, I'm now considered cured — I’m not on any medication other than a daily multivitamin.
Ford: I have grown in ways I never imagined. I earned my bachelor’s degree in psychology and a master's degree in counseling and psychology. I also founded a blog, podcast, and magazine (Savedclassyandchic) where I blend my passions (fashion, fitness, and healthy self-esteem) while also sharing my journey living with inflammatory bowel disease (IBD). My goal is to educate and uplift others who walk this path.
What Advice and Encouragement Would You Offer Someone Who Has Recently Received a UC Diagnosis?
Wilson: My biggest piece of advice is that it does get better. It may not seem like it when you are in a flare-up and really sick, but it will. There is a light at the end of the tunnel.
I think it’s really important to find a community of others who are living with UC. I found that through Instagram, but there are many social media platforms for support. It helps having a support system in friends and family, but it’s also helpful to hear from others who are going through the same thing as you — their experiences and tips can make a big difference. It helped me when I was diagnosed and again when I had my colon removed to see others living with an ostomy bag or J-pouch and how they managed their life with it. There’s support out there — know that you are not alone in this!
Brown: Drink lots of water. If I don’t drink enough water, I can feel the difference in my body. Smoothies are a great combo of fruits, veggies, and extra fluids. I make a fruit smoothie with greens added, and it helps keep me regular. Also, know that this is not the end of the world. It may feel like that because it is not something other people you know have gone through, and because it is hard to deal with. But the key is to think positive. Trust in yourself, find doctors you can trust, and have faith that things will get better.
Ford: I’m a light-hearted, joyful person, so my first tip is simple: laughter. Find humor every day — your body craves positive energy to fight flare-ups.
I avoid trigger foods, and I exercise six days a week. Right now, I’m training for a powerlifting competition! Consistency is key, in both mind and body. Get moving: Go to the gym, walk, dance, stretch, three to four times a week if possible. Movement is powerful medicine. But don’t be afraid to say no and rest when your body calls for it; rest is a vital part of healing.
Keep a food journal to track your triggers, cultivate a trusting relationship with your medical team, and always speak up for yourself honestly and respectfully. You know your body better than anyone else. Stress is a huge factor in IBD, so keeping my mind healthy and free is essential. Having a strong support system is vital. Chronic illness can feel isolating. I’ve been excluded from many events because of flare-ups, and those experiences have made me vow to never make anyone feel alone in their struggles. Don’t let anyone’s lack of understanding minimize your experience or feelings.
Allow yourself to feel all the emotions — shock and sadness — but don’t stay there too long. It’s time to fight through. Life is still beautiful, even with IBD.
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