This last Crohn’s Disease flare-up was a monster. A painful and frightening monster that crept into my life and tried to swallow me whole. Could I have stopped it? The simple answer is no. Could I have taken steps in hindsight to have made the monster less scary? Absolutely. Let’s take a journey together through a severe Crohn’s Disease flare-up.
My Crohn’s Disease Diary
January through May 2018: The Perfect Storm
I am getting my Remicade infusions every 8 weeks. Feeling great mentally, so I’ve decided to taper off my anxiety medicine called Buspirone. Also feeling great physically, so I am going to slowly start to incorporate gluten and sugar back into my diet. I am starting a rigorous yoga teacher training schedule while still waking up at 3 a.m. every weekday for work at the news station. I just got strep throat and have to go on an antibiotic. I am overwhelmed, cheating on my strict diet, and lying to myself about the onset of some gut symptoms. I believe I can treat this myself and it will all go away.
May 2018: The Pre-Flare-Up
Yoga teacher training is over and I start teaching right away without any break. I am still waking up at 3 a.m. every weekday for work, but I am not myself. I am angry, judgmental, and ungrateful. I am eating lots of sugar and gluten. I am having mild to moderate gut pain now. I can’t treat this myself anymore. My doctor puts me on 9mg of Uceris, a steroid commonly used for Ulcerative Colitis patients. It’s working, but only for a few weeks. I find out the Remicade is metabolizing in my body too quickly, so there’s no medicine left in my body after a few weeks post-infusion.
June 2018: The Monster Reveals Itself
I feel out of touch with myself. I’ve overworked myself for months now. I am not eating properly, and the Uceris has stopped working. I go to work every morning in severe pain. I am talking on-air during the morning show and I want to crouch down and cry. People are starting to notice. I am bleeding from the gut and I cry to myself at home. I let it get out of hand. Where have I been these past few months? Why did I let it get this bad? I am on bed rest and can’t keep any food down. I have to take 2 weeks off work. My doctor puts me on 40mg of Prednisone and increases my Remicade dosage.
July 2018: A Fresh Start
I am sure you are seeing some major red flags in my diary so far. Maybe there were times you wanted to scream, “Hilary, for goodness sake, help yourself!” I don’t blame you. Here’s the good news: It’s July and I am feeling almost back to normal. I am tapering off the prednisone which did its job. I have also received the higher dose of Remicade which also seems to be working. I’ve gone back on a strict no grain and no sugar diet and have added a pharmacy of supplements with my meals every day. I am slowing down with work and yoga teaching, taking lots of breaks and self-love days, and filling my days with gratitude. The monster is almost completely gone and I feel better than new.
- You have a chronic condition that requires special attention and specific lifestyle requirements. Medicine is life-saving, but it only extends so far. You are responsible for taking care of yourself every day.
- When you start to feel symptoms, call your doctor. Do not try to heal yourself. There is no turmeric pill, no special diet, and no yoga practice that will get you out of a Crohn’s Disease flare-up once it begins. The symptoms will only get worse over time unless there is immediate medical attention.
- This isn’t your fault and don’t let anyone tell you otherwise. You could be doing everything right from diet to mental health, but your disease could flare-up. Your medicine could stop working. Crohn’s Disease is manageable, but tricky, and you are only human.
- You will get through this flare-up, one way or another. There will be times when you feel like you won’t ever come out of it. I am here to tell you that you will. Just hold on and keep fighting.
- Push your doctor. Be your own advocate at all times. If you feel symptoms, but your blood work is normal, keep pushing them to help you. If you need more explanations about medicines or treatment plans, don’t stop asking until you get your answers.
- You are whole. You are enough. This disease doesn’t define you.
- Allow yourself to heal and don’t feel guilty about this. Give yourself plenty of grace.
- Eat fresh foods and take your supplements. There is more research out than ever before about the power of diet and Crohn’s Disease.
- Let the people in your life know what is going on. They want to help you and you should accept their help. No one fights alone.
- You don’t have to pretend like you’re feeling good when you’re in pain. You are not an actor.
- Relationships can become strained when we are sick. This is natural and sometimes unavoidable. Find comfort knowing that those who truly love and respect you will stick around. Everyone else isn’t worthy of being in your beautiful life.
- Every single human is going through his or her own battle. Never look at others as if they are more blessed than you are. Yes, you have a chronic disease, but it is not the end of the world. In fact, you are living your best life despite this disease.
What lessons have you learned during a Crohn’s Disease flare-up?
You may also be interested in: “5 Positive Affirmations to Get You Through a Crohn’s Disease Flare-Up” and “8 Yoga Poses For Bloating, Cramping, and Gas.”