I woke up from my colonoscopy five years ago and was told “You’re in remission”. Tears of happiness streamed down my cheeks. I was in disbelief. Was I dreaming?! It took a decade for me to hear those words, and one week to be robbed of the title.
One week later, I was hospitalized with a small bowel obstruction. The first of three that would happen that next year. So many of us in the chronic illness and IBD community specifically, are constantly chasing after “remission”. But what does remission really mean?
Remission is different for every person, much like IBD manifests differently in everybody. When I heard the word remission five years ago, it felt magical and exciting.
Celebratory post-colonoscopy cheesecake after finding out I was in remission Feb. 2015.
Hell, my mom and boyfriend (now husband) and I went out and celebrated with a big meal at The Cheesecake Factory. When I flared days later, I started feeling skeptical of the term and came to realize how fleeting and elusive remission can be. I laid in the hospital bed, devastated and dumbfounded by what had just transpired.
It took three bowel obstruction and 18 inches of my small intestine to ultimately be removed in August 2015, for me to reach surgical remission. While surgery is not a cure, my bowel resection provided me with a new beginning. As I approach my five year “remission” anniversary this August,
Hospitalized a week later with a bowel obstruction.
I remain on edge. I’ve been blessed to be on cruise control with my illness these past few years. My GI has me well-managed on my biologic and vitamins, I know how to read my body when it speaks to me through symptoms, and when I suspect something is going awry, my care team and I nip the disease activity in the bud.
To me, remission is waking up each morning with the expectation that I’m going to feel well and be able to take on the day as planned. Remission is having more ‘feel good’ days than painful ones. Remission is being confident to attend social outings, travel, and do all the things I set my heart out to do, without feeling suffocated by the fear of the ‘what ifs” of a flare. Remission is being able to focus on the part of me that is so much more than my disease. 
Remission tends to the be the “goal” when it comes to IBD, but it’s not always feasible. It’s easy to see posts on social media and feel like you’re failing because your body is failing you, repeatedly. It took me a decade of living with Crohn’s and surgery to be in remission.
While I’m a compliant patient, I don’t take much credit for my remission. I know how at the drop of a hat I could be rushing to the ER, unable to breathe from my abdominal pain. I remember all the flares that blindsided me and I know my body can decide to flip the switch at any given moment. I feel lucky most the time—while my Crohn’s could be worse, it could be better, too. Remission doesn’t mean that symptoms are non-existent, moreso that the majority of the time I feel well with some not so great days sprinkled in the mix. While in this state of remission, I remind myself not to take this time for granted, not to become complacent, and to stay vigilant on managing my symptoms and overall well-being.
Rather than focusing on the big “R” word that’s loaded beyond belief and placing so much emphasis on it, let’s focus on feeling the best we can each day, communicating openly with our physicians, friends, and family, and taking this uphill battle one step and one day at a time.
Additionally, users can enable the sharing of “Progress Reports” which include adherence information and all other modalities to optimize your health. Sometimes a caregiver may not be aware of what you need to take and when, this too can be shared via the “Share Care Plans” functionality.
of Maryland, never knew how much her strong faith would help her through the ups and downs of chronic illness. As a wife, mom of three, and an educator, Kolby shares a heartfelt, eye-opening piece that beautifully captures how faith correlates to the daily battles we face as people with IBD. 
I was as sick as I’d ever been in my life, and couldn’t figure out why I wasn’t getting better. In December 2019, I received confirmation that I had Crohn’s Disease. I was afraid. But through the wind and the waves, I heard Him say “Take heart; it is I. Do not be afraid.”
Soon, though, Peter took his eyes off of Jesus and focused instead on the wind and the waves and began to sink. He cried out “Lord, save me!” (Matthew 14:30) and Jesus instantly reached out His hand to catch Peter. When He pulled Peter from the water Jesus simply asked “Why did you doubt?” They returned to the boat and the wind and waves cease.
I found myself focusing on all the tests and doctor’s appointments I had to go to, and the infusions I’ll have to take for the rest of my life to maintain any sense of health I used to know. I focused on the unpredictability that is Crohn’s, and not on the predictable, steadfast love that can only be found in our Savior.
When you fall in love with IBD, there’s an extra layer of complexity, trust, dependency, and appreciation. There’s no telling what the next hour will bring. You need to be flexible. You need to be understanding that plans may not go as expected. You need to trust that when the next flare up strikes that you won’t be on your own and that your partner will be there every step of the way.
You need to believe that when the going gets tough you won’t be deserted; you won’t be made to feel as a burden. You need to trust that your partner sees you as much more than your disease.
In a world where we all want immediate gratification, think about how it feels when you share something and there are crickets on the other end. Use your social media channels as a platform to share what you care about and what matters most to you, rather than trying to think about what others want to see.
Fatigue from motherhood when you have a chronic illness can be mind-numbing and debilitating, but seeing your body create a life and then bring a baby into this world makes you feel a renewed sense of love for a body that you’ve been at odds with for years. IBD and motherhood has it’s worries and challenges, but at the end of the day, your children will be the greatest light in your life, and the most magical motivators of strength. There’s almost too much going on to worry about your own well-being, which is both a blessing and a curse!
Gone are the days of going out at 11 pm, now I rarely go out and when I do, I’m usually home before 10. There’s no pressure to stay out until bar close or take a shot. My friends are all grown women, many of them are moms, our priorities have shifted. Adult conversation over brunch or a glass of wine and some sushi or tapas is refreshing and rejuvenating. I openly communicate about my disease when asked and don’t shy away from the conversation like I once did.
If you’re reading this and you’re newly diagnosed, a teenager, a 20-something, trust me when I say that balancing life—all your obligations, your network of support, your job and what you’re meant to do with your life will find it’s way. Don’t beat yourself up by creating a timeline or a vision board that sets you up for failure. Don’t try and keep up with the Jones’. Don’t compare where you are in life to your peers. Because there is no comparison. When you have IBD you are being unfair to yourself if you try and be just like everyone else, because you’re not. And that’s ok. Use your experience as a patient to give you patience within yourself. Everyone faces struggles, everyone faces setbacks, but someday I promise you’ll look back and those very same struggles will be the reason you are strong, focused, driven, empathetic, and living the life you were meant to live.
Yes, there have been times when everything felt heavy and bleak. Yes, there are still times I feel sorry for myself. But those days are far outnumbered by the joy-filled, happy days I choose to focus on.
This week—I interview Therezia AlChoufete, a Registered Dietitian Nutritionist (RDN) who specializes in Gastrointestinal Diseases, to set the record straight about this area of disease management. Therezia completed her Bachelor of Science in Neuroscience and her Master of Science in Nutrition and Dietetics from the University of Pittsburgh.
At the time she was diagnosed, Kate was immersed in her undergraduate studies that were divided between Geoscience and Studio Art and took on the role of caregiver for her mother. This week Kate shares how art has benefited her patient journey and offers up helpful ways you can incorporate art into your life, even if all you can draw are stick figures (like me!):
The microbiome is a hot spring of unanswered questions in relation to its role in IBD, as well as many other conditions. Applying the methods I have used in other projects, I researched the different types of bacteria and their shapes and used them to create a series of abstract drawings that relate to the digestive system and allow people to develop a sense of the complexity of the human body.
Your disease is making the simple task of sitting in class alongside your peers an ordeal. While you may feel alone in this moment, thousands of college students around the world living with IBD can relate to this overwhelming stress and strain.
Balance is key. Health comes first,” said Aaron Blocker, a Crohn’s patient and IBD advocate. “It sucks to have to pause college because of your health, but school will always be there, and your health is important for long-term success.”
As a straight A student, now struggling to pass classes due to an awful flare, I was devastated that I needed to ask for help. I was appreciative of my professors’ extreme kindness and that I was granted accommodations (deadline extensions, attending a different lecture on bad days, rescheduling exams, etc). This was a profound moment that taught me it was okay to ask for help,” said ulcerative colitis patient and IBD advocate, Jenna Ziegler.
Ask for extra time, ask for a note taker. Get in touch with your school’s office for those with disabilities. Access the support you need to be on equal ground.”
I also can use the bathroom frequently without question, eat in class without any questions and I’m allowed more than the usual 2 absences allowed in most classes,” said Tina Aswani Omprakash, Crohn’s patient and IBD advocate. “If there are group projects and I can’t partake; I ask the professor if I can do something on my own.”
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