Patient Spotlight: Nikki’s Experience with Ulcerative Colitis

For this second episode, I am featuring another member of my IBD support group, Nikki Morgan. Nikki has been an incredible asset to our group and is always willing to lend an ear when it’s needed. She also gives fantastic advice and has a real calming presence. I am so glad to have met her. Today, Nikki is gracious enough to share her story with ulcerative colitis.

Nikki had a lot of stomach issues growing up through high school with frequent diarrhea, but was diagnosed with IBS without any imaging or testing. She started noticing blood in her stool in December of 2018, which made her seek further medical examination, receiving her first colonoscopy in February of 2019. At that time, she was diagnosed with chronic proctitis, a form of ulcerative colitis that is isolated to the rectum. Each year the inflammation has progressed and the ulcerative colitis is now considered pancolitis, affecting her entire large colon. 

Nikki started treatment with oral mesalamine, mesalamine suppositories, and eventually enemas, which did not seem to help. At that point she was introduced to “biologics.” She first tried Humira, which did not work and caused allergic reactions. Then came Stelara. This did not work and led to her first hospitalization. After this hospitalization, she worked with an integrative provider to address diet as well as hormones and other co-morbidities. She decided to take a holistic approach to treatment including different diets, supplements, meditation, mental health therapy, sauna, ice baths, and pretty much anything else you could think of.

She felt REALLY good for about a year, but then entered another significant flare leading to her second hospital stay. From there, she was put on Remicade, then Entyvio, and most recently Rinvoq. She has been on Rinvoq for about 3 months and it has been the most effective medication so far with the least amount of side effects. Nikki believes that what works best for her body is a combined approach. Holistic practice alone does not resolve her inflammation, but it has helped the medication be more effective, manages a lot of her symptoms, and helps her live her life in a healthier manner. 

I decided to ask Nikki a few more questions about her experience.

What is or has been the hardest part about living with a chronic illness?

“Giving myself grace and letting go of the “old me” has been the hardest part of all of this. For example, although fatigue is a recognized symptom of UC, I seem to compare my energy level/productivity with healthy individuals or the lifestyle I used to have. I have high expectations of myself and it can be really hard to accept that I’m no longer capable of pushing my body in the same ways I used to. Rest is a necessary part of staying in remission or coming out of a flare and that includes mental rest! Stress adds a lot to this condition and that looks different for everyone. It’s ever-changing and I have to remember it’s okay to mourn my old self or the “healthy” version of myself that I dream of.”

What tips do you have for someone who is newly diagnosed?

“Surround yourself with people that either understand and/or strongly empathize with you, ideally both. It’s really important for your community to empathize with your limitations and support you through the highs and lows. A support group can truly understand what you are going through, whether discussing the frustration of symptoms, the maddening circus of jumping through hoops of insurance, the defeating feeling of having providers that don’t seem to care, or just the overall weight of having a chronic illness. Outside of that, your community should never make you feel bad for having to bail on plans, guilt you into “cheating” on your diet or lifestyle changes, or pressure you to keep pushing when all you really need is rest. But honestly, to get that community involves being really open and vulnerable about this disease. Be honest with your people about what your life really looks like (because let’s be real, most people have no idea) and let them show up for you in the ways you need it most.”

What are some things that help you cope and you find comfort in? 

“I find a lot of comfort in reminding myself how amazing my body is. It can be incredibly frustrating to not be able to participate in the sports and activities I used to…HOWEVER, my body has continued to do amazing things. Despite how sick I’ve been over these last few years, my body has carried me through the Grand Canyon, up Half Dome, down countless ski slopes, and so much more. I remind myself that I do everything in my power to get to/stay in remission and really, that’s all I can do. In the meantime, I do what I can and enjoy every moment that I feel good. When things get bad and I start to lose hope, I reach out to my community and let them love on me a little harder. Oh, and my wife’s homemade GF/DF cinnamon rolls help.”

What would you like others to know about this disease, especially those who don’t have a chronic illness? 

“There’s a few things here that come to mind. I guess it can be summed up as how complex this disease is, both physically and mentally. We can have such a broad array of symptoms that affect us even when we are in remission. Joint pain, bloating, fatigue, etc. A lot of times we feel a whole lot worse than what we look like. Most of us also constantly carry a weight of the fear of going back into a flare, questioning every symptom as a preceding factor to another hospital stay. This disease is different for everyone. Some people can change their diet and remain in remission for the rest of their lives, which is great! But others give everything they have into finding remission, both utilizing medications and holistic interventions, and still require surgical intervention. So try to just listen and be empathetic before trying to offer advice or compare to someone else you know with this disease.”

Thank you for sharing your story, Nikki! I couldn’t agree more about grieving the old self. That was an overwhelming feeling I experienced when I was first diagnosed, but it has settled over time and I’ve learned to move towards acceptance. Oh, and those cinnamon rolls sound amazing! You are a true IBD warrior and we are glad to have you as part of the IBD community.

If you would like to reach out to Nikki for more information about her experiences, or just to chat, you can follow her on Instagram @harmon_nikki!