IBD Goes Beyond the Gastrointestinal Tract
Editor's note: Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. We want to shed light on these challenges during Crohn’s and Colitis Awareness Week (December 1-7, 2019). Crohn’s and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here’s what they had to say!
Fatigue and nausea are the hardest parts of UC
I always say that if I didn’t have fatigue and nausea, I would be ruling the world! After a while, I feel like my pain drones on and on. It becomes apart of my life, and I find ways to push through it. However, fatigue and nausea are a horse of a different color. My fatigue is more than the feeling of being sleepy or tired. It feels like I’m carrying an elephant on my back while I run a 15k marathon. I’m drained of energy and patience. And it never seems to go away no matter how much I rest, I seem never to have enough energy to get through my day.
As a mother, it’s incredibly frustrating and inconvenient. I’m sure my son is tired of hearing how tired I am. I’m sure people think I’m flaky or lazy. It makes me self conscious and frustrated. The idea that somedays I have to make a decision between washing the dishes or being able to play chess with my son is soul-crushing. Then you tack on nausea, which for me, often brings dizziness. The combination definitely impedes on my work and social life.
Back pain during an ulcerative colitis flare
I have always had this excruciating back pain when my flares begin. It feels like someone is scraping hot glass up and down my back. It happens at the beginning of the flare and while I am in the restroom. I had it consistently before I had my colon removed. Now, if I’m experiencing a pouchitis flare, then I have the same back pain.
It’s as debilitating as my pain from my spondylitis. However, it covers my entire back. The only way to relieve the pain is through pain management monitored by my doctors and using heating patches. I’ve also tried topical muscle pain relievers like tiger balm, but only pure arnica seems to help. Since the area is sensitive to the touch, I ask someone to apply it generously and gently with a feather touch. Warm baths with juniper oil and other muscle pain reliever oil help right before bed. Because it is triggered every time I use the restroom, it makes it hard to find relief during a flare-up.
Crohn’s and UC go beyond the gastrointestinal tract
Because it’s a digestive disease, most people assume that Crohn’s disease and UC only affect the gastrointestinal tract. That it can be regulated by eliminating stress and controlling one’s diet. Well, there are a few things to note.
One, IBD affects more portions of the body outside of the digestive tract. So, the symptoms are multiverse and often unpredictable. Second, the disease is so personalized that a blanket diet suggestion doesn’t work for every patient. Therefore, food cannot cure the disease. Some people can control their symptom frequency with diet changes and restrictions, all patients are not as fortunate. Everyone’s triggers are different. What is healthy for some is not necessarily fit for all. The best thing to do for a patient is to listen before suggesting. The ideas you have about living with a chronic condition like Crohn’s disease or ulcerative colitis may actually be a misconception. If you are eager to help a patient, you can only do so with knowledge of the disease and the patient experience.
Accepting the diagnosis
If I had it to do all over again, I would change how I reacted to the diagnosis. I lived in denial for the first few months of the disease. And once I found treatment and started feeling better, I didn’t look any further into the condition. I allowed my fear to take over. Then when I was looking for more information, I went down rabbit holes that only increased my anxiety and aversion to accepting my disease. I would suggest following some of the GIs and advocates on social media who post more fact-based information than they do opinions or personal stories. Find an IBDologist who you can openly communicate with and feel comfortable with. Jot down notes in your phone of all the words, phrases, treatment options, and alternative therapies you hear around or find on the internet and then research them. Bring these topics up to your doctor at your next appointment to keep the lines of communication open.
It’s also a good idea to create a team of doctors. A unit of practitioners that include your GI, who consult one another, share blood test results, and all share your vision of healing. Lastly, I would say that you should expect to have some sort of healing on your IBD journey. You should have a time that is actively working at healing you and placing you in remission. You should not expect to be miserable in your disease all of the time. There is a life to live, and you can absolutely live it in spite of IBD.
Do you keep a food diary to help manage symptoms?