By Michelle Pickens, as told to Danny Bonvissuto
As early as I can remember, Iâve 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, Iâd 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 Iâm nauseous? Doctors would say, âOh, youâll grow out of it. Itâs just your anxiety.â
Finally, a Diagnosis
After years of misdiagnosis, I was finally diagnosed with Crohnâs 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.
Thereâs no blood test for Crohnâs. No way to prove what youâre 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.Â
It was such a relief to get the diagnosis because it made me feel like I wasnât crazy. For so many years I knew something was wrong and couldnât 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 Crohnâs. When I first started to share, there werenât as many people talking about it.
Iâve been able to form relationships in an online community through shared experiences. I hope someone can see my story and feel that, if theyâre at the beginning of their journey, thereâs a way to get through.
Managing My Medication
At first, I was on a lot of medication that wasnât 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 donât 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 Crohnâs medicines. After I had him, it didnât make sense to be reliant on them.
Crohnâs, Pregnancy, and Motherhood
Crohnâs 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. Crohnâs changed my expectation of what I thought motherhood would be.
Iâve learned that Iâd rather be present and able to enjoy him in the good moments than push it when Iâm sick. Itâs been difficult. But if Iâm not well, I canât 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 donât have accessible help. In those situations, Iâll do lower-key activities that I can enjoy with him but that arenât physically demanding on me.
Schedule and Adjust
Right now Iâm 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, itâs such a game changer.
But Crohnâs still affects my day-to-day. I have days where Iâm feeling sick, and need to rest and change my plans so Iâm home and not out somewhere.
No matter how planned-out I have my day or week, if Iâm 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. Theyâre 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 wasnât the case at first. The more open Iâve been about Crohnâs, the more people understand that Iâm not flaking out if I have to change plans; thereâs 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 Iâm comfortable doing, but have also become comfortable with changing plans. Even if Iâm excited to go out to dinner with a friend, I donât push it if I feel terrible that day.
Food in Flux
Iâve followed a gluten-free diet for years. I started with an elimination diet and realized that gluten was bothering me.
Other foods arenât as black and white. I can eat a salad one day and itâs fine, and eat the same salad the next day and it makes me sick. I repeat the safe foods that donât 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: Iâll wake up and feel nauseated and need a starchy food like dry cereal. If Iâm 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 donât want to be sick. But itâs hard because you never really know. Itâs kind of a gamble.
Flexibility Is Key
Iâve 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. Thatâs my priority, and everything else can wait.
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