How Crohn’s Disease Changed My Routines

By Michelle Pickens, as told to Danny Bonvissuto

As early as I can remember, I’ve had issues with my health. When I was little, I had severe constipation, nausea, vomiting, and food sensitivities.

As I got older, those symptoms transitioned into diarrhea, irregular bowel movements, and pain. I was always very fatigued and my immune system was weak: The second someone in my class had the cold or flu, I’d get it, too. Looking back, it was a sign.

From a mental perspective, my anxiety was high. What if I need to find a bathroom? What if I’m nauseous? Doctors would say, “Oh, you’ll grow out of it. It’s just your anxiety.”

Finally, a Diagnosis

After years of misdiagnosis, I was finally diagnosed with Crohn’s disease in 2015. I was 23 and had just finished up college while working full time. My symptoms were getting worse. I had a lot of vomiting and pain. The fatigue was at the point where it was difficult for me to work or even get out of bed some days.

It was so bad it pushed me to seek additional care. I took a couple months off, looked for another job, and went through all the doctor appointments it took to get the diagnosis.

There’s no blood test for Crohn’s. No way to prove what you’re feeling. Eventually I saw the right doctor, who did a test with a pill camera called a small bowel capsule. (This is a pill-sized camera that you swallow, allowing doctors to see inside your digestive system.) It tracked my intestines and was able to get into a blind spot where neither a colonoscopy nor endoscopy can see inflammation. 

It was such a relief to get the diagnosis because it made me feel like I wasn’t crazy. For so many years I knew something was wrong and couldn’t name it. I also felt hopeful. Once I knew what I was dealing with, I knew I could work to get to a better place.

Sharing My Story

In 2016, I started a blog called Crohnically Blonde as an outlet to connect with people as I go through the stages of dealing with Crohn’s. When I first started to share, there weren’t as many people talking about it.

I’ve been able to form relationships in an online community through shared experiences. I hope someone can see my story and feel that, if they’re at the beginning of their journey, there’s a way to get through.

Managing My Medication

At first, I was on a lot of medication that wasn’t working well and was a huge imposition on my schedule. Now I get infusions of an immunosuppressive drug every 7 weeks.

It means being away from my family and job for 4-5 hours, and managing child-care coverage during the treatment and the weekend after, because I feel almost flu-like. The extra help allows me to rest and fuel back up after the treatment.

I have the option to be on more medications to control my symptoms. But I try to shy away from those and manage it on my own because I don’t want to be on medicine for every single thing.

Before I had my son, I was more willing to try different medications. But while I was pregnant, I could barely be on any of the Crohn’s medicines. After I had him, it didn’t make sense to be reliant on them.

Crohn’s, Pregnancy, and Motherhood

Crohn’s affected me throughout my pregnancy. I got very sick in my third trimester because I went off my immunosuppressive drug to avoid passing any on to the baby. I ended up having to be induced early so I could get back on the medication as soon as possible.

My son, Maddox, is 1 now. Crohn’s changed my expectation of what I thought motherhood would be.

I’ve learned that I’d rather be present and able to enjoy him in the good moments than push it when I’m sick. It’s been difficult. But if I’m not well, I can’t be there for my child. I try to be with him as much as I can, but there are times when I need to step back and take an hourlong nap.

I have a great support system: My husband, mom, or mother-in-law can step in and help out for a little while, and when I feel better, I can be a better mom. There are also days when I don’t have accessible help. In those situations, I’ll do lower-key activities that I can enjoy with him but that aren’t physically demanding on me.

Schedule and Adjust

Right now I’m in a pretty good spot. I work from home now, as a recruiter for a tech company, and that makes a huge difference. A lot of my anxiety in the past was around being in an office and being sick. Now that I can work remotely, it’s such a game changer.

But Crohn’s still affects my day-to-day. I have days where I’m feeling sick, and need to rest and change my plans so I’m home and not out somewhere.

No matter how planned-out I have my day or week, if I’m not feeling well that takes precedence. I like to be a very scheduled person. But I have to roll with the punches and have a plan B.

The biggest challenge is managing my sleep and stress. They’re both very influential in symptom flare-ups. I have to get at least 8 hours of sleep, no matter what. And I try to incorporate time to de-stress, like reading a book or relaxing at the end of the day.

Going to therapy helps offset stress as well, and is now part of my ingrained self-care schedule.

Social Life Strategies

My co-workers, family, and friends are very understanding. But that wasn’t the case at first. The more open I’ve been about Crohn’s, the more people understand that I’m not flaking out if I have to change plans; there’s an underlying reason.

I only have a certain amount of energy, so now I pick and choose. I know I need to work and be with my family, which means I have less energy to put into social situations.

I plan out what I’m comfortable doing, but have also become comfortable with changing plans. Even if I’m excited to go out to dinner with a friend, I don’t push it if I feel terrible that day.

Food in Flux

I’ve followed a gluten-free diet for years. I started with an elimination diet and realized that gluten was bothering me.

Other foods aren’t as black and white. I can eat a salad one day and it’s fine, and eat the same salad the next day and it makes me sick. I repeat the safe foods that don’t make me sick and stick to a general schedule of three meals a day that are pretty much all gluten free.

Sometimes the timing matters: I’ll wake up and feel nauseated and need a starchy food like dry cereal. If I’m going on a road trip, or have a big event, like a wedding, I plan it out and try to be careful about what I eat leading up to it because I don’t want to be sick. But it’s hard because you never really know. It’s kind of a gamble.

Flexibility Is Key

I’ve learned to be as flexible as possible. I never know what each day is going to bring, I just have to trust that my body is telling what it needs for that specific day. That’s my priority, and everything else can wait.

Photo Credit: Tassii / Getty Images

SOURCE:

Michelle Pickens, Crohn’s disease blogger, Maryland.

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