I was diagnosed with Crohn’s disease in May of 2013. It’s been a bumpy ride adjusting to my new normal with Crohn’s. I voraciously read anything I could get my hands on, joined a support group, asked my doctor tons of questions, and tried about a zillion different tips and tricks to try and get healthy.
Curious about my road to a diagnosis? I wrote about it in another post. Go check it out here.
2013 – Adjusting to Crohn’s and Finding the Right Doctor
My first GI who did my colonoscopy and diagnosed me with Crohn’s prescribed me Pentasa. It was so scary to learn that I had a disease without a cure, and I’d always need medication. Then, not only did he tell me I’d take medication for the rest of my life, I’d take multiple pills four times a day! It all seemed impossible! I went to the pharmacy in a daze and received a humungous bottle of pills for the month.
Walking around, stunned, grasping at any thought that made sense, I was in a fog. I felt awful because my Crohn’s had done a lot of damage for who knows how long before a diagnosis. A million thoughts swirled through my head. I had switched to a vegan diet! It was supposed to make me healthy! How could I be sick?! Little did I know, I was entering the denial stage of the grief process.
The grief of being diagnosed with an incurable, life-long disease is crushing, consuming, and confusing. Your whole world is turned upside down. For me, the feeling of being in control of my life vanished. I felt helpless and at the mercy of Crohn’s, not my own choices. Determined to get some semblance of my life back, I knew I had at least one choice: my healthcare professional.
I began researching Crohn’s specialists in Oklahoma City, and found a doctor who literally wrote a book on it! The author of Crohn’s and Colitis for Dummies practices in Oklahoma, and I got a referral to his office. At our first visit, I told him I was taking Pentasa, and he said, “No. We’re changing that. I’m putting you on azathioprine to begin. Look up Pentasa to see what it’s for when you get home.”
We spent the appointment discussing different treatment options and approaches. We decided to begin conservatively and slowly go up the ladder of treatment options. Even though this approach takes longer, I hoped I could take a medicine that was “weaker” if at all possible. I didn’t want to go straight to the big guns if I didn’t need to have that much.
I followed his directions and looked up Pentasa when I got home. It’s for ulcerative colitis! I was so thankful I found a specialist who understood IBD and had trained in the diseases specifically. Otherwise, who knows what other unnecessary or ineffective medications, tests, and/or procedures I would have had. I always recommend finding a doctor who has specific knowledge of your chronic condition because they’re usually super current on the latest research, testing, and treatments.
Learning Everything I Could for Adjusting to Crohn’s
For me, information is power. When I have a problem, the first thing I do is seek out information I can read, watch, or listen to. A Crohn’s diagnosis was no different. I bought books, devoured the information on the Crohn’s and Colitis Foundation’s website, followed IBD doctors on Twitter, and joined the Crohn’s and colitis support group in Oklahoma City.
When I feel out of control, information gives me a feeling of safety. The hardest part of learning about Crohn’s was seeing the phrase, “but Crohn’s affects every person differently.” AAARRRRGGGHHH!!! Hearing that I was in for a trial-and-error situation was maddening. The anger and bargaining of grief were almost constantly cyclical, and I began to fear my normal diet and behaviors, worrying the littlest thing would trigger a flare or make my inflammation worse.
Over the next year or two, I slowly learned what triggers my flares and what doesn’t. I know that I must sleep; 8+ hours is not optional for me. Alcohol or greasy food always made my abdominal pain worse the next day. And stress was my ever present trigger, keeping me inflamed and sick. This was a long and frustrating road. When I felt bad, how do I isolate the thing that did it? I’d eaten a variety of foods and done a variety of things. It was so hard to accept that the only solution was time.
The azathioprine wasn’t working, so my doctor put me on Humira. I travel a lot, so the team wanted to try Humira over an infused drug so I wouldn’t have to worry about infusion appointments when I travel. I started it a few months before my wedding.
This was really hard for me, because I want to try and treat things as naturally as possible. I like to use vinegar and baking soda to clean. I’d rather use peppermint oil instead of Tylenol for a headache. If there’s a tea or herb instead of a pill, sign me up! The idea of taking a biologic that has a long list of side effects and increases my chances of getting cancer was terrifying. My doctor was incredibly patient with me and talked me through all of my concerns. Ultimately, the logic of choosing something that does more good than harm and learning that side effects happen for a very, very small number of people helped me.
If you’re scared or worried about a medicine, test, or treatment, have an open, honest dialogue with your healthcare professional. Get curious and ask why he or she is recommending whatever it is. Share your emotions surrounding any treatment plan so your doctor can talk you through what’s best for you and your body.
2014 – Moving to Another City with Active Crohn’s Disease
In the middle of figuring out how my life impacted my Crohn’s and how my Crohn’s impacted my life, I got married and moved to Seattle. I was so lucky that my doctor in Oklahoma City knew a doctor from his IBD fellowship who practiced in Seattle.
I wrote all about the move on Gutsy Girl Blog. Moving was stressful, but exciting, because I was starting my marriage in a brand new place. All of the change made me flare a few times, but along with learning my triggers, I had learned how to take care of myself during a flare and shorten its duration. You can find my guide on how to take care of yourself during a flare here on the blog.
I spent my first few years in Seattle with moderately active Crohn’s, but at this point, I had accepted it. I figured out how to function with fatigue, learned that Friday night invitations were always a no, and spent my weekends balancing rest and playing outside in the wonderland that is the Pacific Northwest.
All this time, I was on Humira, going to see my IBD specialist on the regular, getting labs routinely, and all kinds of different imaging tests to keep an eye on the inflammation. The Humira wasn’t working on its own, so we added methotrexate as well. I hated it. It made my hair fall out at a much higher rate than normal and made me nauseated.
I was at the end of my rope. When would my healthy lifestyle and following all of my doctor’s directions get me to the promised land of remission?! I openly communicated my emotional experience with my doctor as well as my physical. It’s so important for our healthcare teams to know how our chronic illness affects our quality of life. Three years after moving to Seattle, I asked my doctor, “When do we know it’s time for surgery?”
He replied, “It’s time to consider it and start planning for it now. We’ve exhausted all of our medical options, so I think surgery is the next step.”
Summer 2017 – Resection Surgery and Switched to Entyvio
Agreeing to surgery was both scary and a relief. My doctor explained the procedure to me and began the paperwork process. A million calls and forms later, I was sitting in my pre-op appointment with the chief of GI surgery. I was so lucky to get the surgeon I got. She’s a leader in the field and does resections almost exclusively. She was the best of the best in the University of Washington system, which means she’s one of the best of the best anywhere.
The surgeon explained what she’d do during the surgery, and it was fascinating hearing about the human body’s ability to adapt and repair itself as she detailed the healing process. She outlined the plan for me, told me how to prep the days leading up to surgery, and what I could expect in the days, weeks, and months afterward. I felt completely confident in her, and I couldn’t wait to get it all over with! I’m a teacher, so it was really nice to schedule the surgery for the summer, allowing me to recover without worrying about work.
The surgery went really well, and I recovered as predicted. I continued to experience amazing care at the University of Washington hospital, and going home was a smooth transition.
A few weeks later at my post-op appointment, I thanked her for giving me my life back. I was already feeling better. My husband met me when I was sick, so I was a new person with all of this energy! Now that’s saying something about how sick I was – I was more energetic a few weeks after a massive abdominal surgery than I was before it.
I realized my years with Crohn’s were like the story about the frog in boiling water. The story goes like this: a frog is put in a pot of water on the stove when the water is room temperature. The stove is turned on, and as the water gradually warms to a boil, the frog doesn’t realize it. Well, just like the frog, I had no idea how sick I was because I had normalized to it. It was all I knew. After my surgery, it was like I had a new lease on life!
During my recovery, my doctor switched me to Entyvio because the Humira wasn’t working. Getting an infusion every 8 weeks was better than the Humira weekly because it didn’t hurt like a son-of-a-gun, and Entyvio only takes 30 minutes to infuse. I could be in and out of the infusion room in under an hour. So much easier than specialty pharmacy prescriptions, calling for refills, and injecting myself every single week.
December 2017 – Anemia Strikes!
The school year began, and the fall went just fine. Untilllllll December when I was crazy anemic. I was having a hard time doing any kind of workout. Climbing to my second floor apartment left me breathless and my heart racing. I woke up feeling like I was made of lead. And strangest of all, I could not get enough ice to chew on.
At my 6 month post-op colonoscopy to check that everything was okay, I told my doctor I thought I may be anemic. He tested my blood, and the labs showed that my ferritin level was at 1. When he called me a few hours after leaving the hospital, he told me not to strain myself, be very careful, and come back the very next day for an appointment and iron infusion. I had never heard of an iron infusion before.
At our appointment, he told me that a fellow GI was married to a hematologist, so he explained my situation to her, and got the name of the most knowledgeable hematologist for patients with IBD. My doctor had gone above and beyond to get me the very best care he could. I felt so grateful and lucky.
The hematologist saw me the next week, and I started iron transfusions. He explained to me that three things lead to iron deficiency: not enough iron in someone’s diet, malabsorption, or blood loss. He didn’t know which one was the problem, so we’d do some infusions, retest my blood, and reassess. At our second meeting, my iron wasn’t where it should have been, so he and my GI began testing to find where I was losing blood. He ruled out not getting enough because he calculated the volume I needed and administered that through the infusions. He also ruled out malabsorption because I was getting it through an IV. The small intestines weren’t a factor.
A colonoscopy, endoscopy, and pill cam later, my GI found ulcers in my small intestine. I was slowly losing a very small amount of blood all of the time. I was crushed because the surgery was supposed to give me a few drama-free years! After a lot of iron transfusions, my levels were back to low side of normal levels. The silver lining my hematologist pointed out was that it seemed my iron levels and my disease activity are correlated. He told me that I should always keep an eye on my iron, because that will tell me if I’m experiencing bleeding somewhere.
Based on the pill cam results, my doc recommended switching to Stelara because the Entyvio wasn’t working, either.
Summer 2018 – Moved to Spain with Mildly Active Crohn’s
My iron levels got back into the normal range just in time for my move to Valencia, Spain. I wrote about moving with my Crohn’s just mildly active on Gutsy Girl Blog, too. You’ll learn all about how it took me 5 months to get to an IBD specialist because I didn’t advocate for myself. While that was a mistake, once I got to her, everything was a dream come true.
She saw my medical records and the recommendation from my GI in Seattle that I start Stelara because the Entyvio wasn’t working. Because Spain has a public healthcare system, I didn’t have to wait on a pre-authorization. She ordered the meds, and I was sitting in my infusion seat a week later. No hoops. No stress. It was amazing.
She also established that we’d see each other every 8 weeks with routine labs to monitor my iron levels, among others. Because I hadn’t had any medicine for months, my iron levels had dropped. She prescribed iron supplements, and said we’d watch it before moving to iron infusions.
The iron supplements threw off my digestion (read: made me constipated), so I switched over to taking a ton of spirulina each day. Between the Stelara and spirulina, my levels went back to the healthy range. I hadn’t seen numbers like that in forever! The fatigue I had been living with for years was gone. I can climb a flight of stairs without needing to rest, I can workout to build muscle, and I can accept Friday night invitations.
Essentially, now that I’m on a medicine that works for my body, I have my life back. I still get abdominal pain. I still have days I go to the bathroom 8 times. And I still worry that if I have a second glass of wine I’ll flare the next day. Despite those things, having my energy back means I can function and be successful at so much more.
While I still haven’t heard the magic word “remission,” I know I’m close. It took years to learn my disease, make the lifestyle changes necessary, and get on the right medication, so I’m no giving up now! Fingers crossed for normal labs and a clear colonoscopy in the near future!
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