By Michelle Pickens, as reported by Danny Bonavissotto
As early as I can remember, I had problems with my health. When I was a child, I had severe constipation, nausea, vomiting, and food sensitivities.
As I got older, these symptoms changed to diarrhea, irregular bowel movements, and pain. I was always very tired and my immune system was weak: if anyone else in my class had a cold or the flu, I would get it too. In retrospect, it was a sign.
From a mental standpoint, my anxiety was overwhelming. What if I need to find a bathroom? What if I’m sleepy? Doctors will say, “Oh, you’ll grow out of it.” It is only your concern.”
Finally, an assessment
After years of being misdiagnosed, I was finally diagnosed with Crohn’s disease in 2015. I was 23 years old and had just finished college while working full time. My symptoms were getting worse. I had a lot of vomiting and pain. The fatigue was so great that it was difficult for me to work or even get out of bed for some days.
It was so bad, it pushed me to find additional care. I took a few months off, looked for another job, and went through all the doctor appointments it took to get a diagnosis.
There is no blood test for Crohn’s. There is no way to prove what you are feeling. Finally I saw the right doctor, who did the test with a bullet 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 bowels and was able to get to a blind spot where a colonoscopy can’t. And neither endoscopy can see the inflammation.
It was such a relief to get the diagnosis because it made me feel like I wasn’t crazy. For 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 a better place.
Share my story
In 2016, I started a blog called Crohnically Blonde as an outlet to connect with people as I went through the stages of dealing with Crohn’s. When I first started sharing, there weren’t many people talking about it.
I have been able to build relationships in an online community through shared experiences. I hope that someone can see my story and realize, if they are at the beginning of their journey, there is a way to get there.
Managing my medications
At first, I was on a lot of medication that wasn’t working well and had a big impact on my schedule. Now I receive infusions of an immunosuppressive drug every 7 weeks.
This meant living 4-5 hours away from my family and work, and managing childcare coverage during treatment and on weekends, because I almost felt like the flu. The extra support allows me to rest and recover after treatment.
I have the option of taking more medications to control my symptoms. But I try to stay away from them and manage it on my own because I don’t want to be on medication for every single thing.
Before I had my son, I was more willing to try different drugs. But when I was pregnant, I could hardly be on any Crohn’s medication. I had no sense of trusting them after this.
Chronus, Pregnancy, and Motherhood
Crohn’s affected me throughout my pregnancy. I got very sick in my third trimester because I went off my immunosuppressants to prevent any transmission to the baby. I had to get infected quickly so I could get back on the drug as soon as possible.
My son, Maddox, is now 1. Crohn’s changed my expectations of what I thought motherhood would be.
I’ve learned to be able to be present and enjoy the good times instead of suppressing it when I’m sick. It has been difficult. But if I’m not well, I can’t be there for my child. I try to keep up with it as much as I can, but sometimes I need to kick back and take an hour long nap.
I have a great support system: my husband, mom, or mother-in-law can step in and help for a while, and when I feel better, I can be a better mom. There are also days when I don’t have accessible help. In these cases, I will do less important activities that I can enjoy with him but that are not physically demanding on me.
Schedule and organize
Right now I’m in a good place. I now work from home, as a recruiter for a tech company, and it makes a huge difference. A lot of my anxiety in the past revolved around being in an office and getting sick. Now that I can work remotely, it’s such a game changer.
But Crohn’s still affects my day. I have days where I feel sick, and need to rest and change my plans so that I am home and not out.
No matter how much I have planned for my day or week, if I’m not feeling well that takes priority. I like to be a very determined person. But I have to roll with the punches and have a plan B.
The biggest challenge is my sleep and stress management. Both of these are very effective in symptomatic flare-ups. I have to sleep at least 8 hours no matter what. And I try to include time to de-stress, like reading a book or relaxing at the end of the day.
Going to therapy also helps relieve stress, and is now part of my self-care schedule.
Social life strategies
My coworkers, family, and friends are very understanding. But it was not so in the beginning. The more open I’ve been about Crohn’s, the more people understand that I’m freaking out if I have to change plans. There is 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 be in social situations.
I plan what I’m comfortable doing, but I’m also comfortable with changing plans. Even if I’m excited to go out to dinner with a friend, I won’t push it if I feel terrible that day.
Food in Flux
I have followed a gluten free diet for years. I started with an elimination diet and realized that gluten was bothering me.
Other foods are not 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 eat safe foods that don’t make me sick and stick to a normal schedule of three meals a day that are mostly gluten free.
Sometimes time is of the essence: I’ll wake up and feel tired 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 and try to be careful about what I eat because I don’t want to get sick. But it’s hard because you never know. It is a kind of gambling.
Flexibility is key
I have learned to be as flexible as possible. I never know what each day is going to bring, I just trust my body to tell me what it needs for that particular day. That is my priority, and everything else can wait.