Written by Michelle Pickens, as told by Danny Bonfisotto
As early as I can remember, I had problems with my health. When I was young, I had severe constipation, nausea, vomiting, and food allergies.
As I got older, those symptoms turned into diarrhea, irregular bowel movements, and pain. I was always very tired and my immune system was weak: the second person in my class had a cold or the flu, I would have had it too. Looking back, it was a sign.
From a mental perspective, my anxiety was severe. What if you need to find a bathroom? What if I feel nauseous? Doctors will say, “Oh, you’re going to get out of it. It’s just your anxiety.”
Finally, the diagnosis
After years of misdiagnosis, I was finally diagnosed with Crohn’s disease in 2015. I was 23 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 at the point where it was hard for me to work or even get out of bed on some days.
It was so bad that I had to seek additional care. I took two months off, looked for another job, and went to all the doctor appointments it took to get the diagnosis.
There is no blood test for Crohn’s. There is no way to prove what you feel. 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 what’s inside your digestive system.) I traced my intestines and was able to get into a blind area where either colonoscopy or endoscopy could not see the inflammation.
It was a relief to get the diagnosis because it made me feel like I wasn’t crazy. For 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 for connecting with people as I went through the stages of dealing with Crohn. When I first started getting involved, there weren’t many people talking about it.
I have been able to form relationships in an online community through shared experiences. I hope someone will see my story and feel that if they are at the beginning of their journey, there is a way to get around it.
administering my medications
Initially, I was taking a lot of medications which were not working well and that was too much of a force on my schedule. Now I get injections of an immunosuppressant drug every 7 weeks.
This means being away from my family and work for 4-5 hours, and managing childcare coverage during treatment and the weekend after, because I feel like I have the flu. The extra help allows me to rest and regain fuel after treatment.
I have the option of taking more medication to control my symptoms. But I try to stay away from those and manage it myself because I don’t want to be in medicine for everything.
Before I had my son, I was more than willing to try different medications. But while I was pregnant, I was on hardly any of the Crohn’s medications. Having given birth to him, it did not make sense to rely on them.
Crohn’s, pregnancy and maternity
Crohn’s has affected me throughout my pregnancy. I became very ill in my third trimester because I stopped taking the immunosuppressive medication to avoid passing any of it on to the baby. I ended up being stimulated early so I could be back on medication as soon as possible.
My son Maddox is 1 now. Crohn’s changed my expectations of what I thought motherhood would be.
I’ve learned that I’d rather be present and able to enjoy it in the good moments than stress it out when I’m sick. It was hard. But if I wasn’t feeling well, I wouldn’t be there for my baby. I try to be with him as much as I can, but there are times when I need to step back and take an hour’s nap.
I have a great support system: my husband, mom or mother-in-law can step in and help me for a while, and when I feel better, I can be a better mother. There are also days when I can’t get accessible help. In these situations, I will do simple activities that I can enjoy with him, but that do not require physical effort.
scheduling and tuning
Now I am in a very good place. I’m working from home now, as an employee of a technology company, and it makes a huge difference. Much of my anxiety in the past has been about being in the office and being sick. Now that I can work remotely, it’s a game changer.
But Crohn’s still affects my daily life. I have days when I feel sick, and I need to rest and change my plans so that I am at home and not somewhere.
No matter how well I plan my day or week, if I don’t feel good, that takes precedence. I like to be a very scheduled person. But I have to deal with the punches and I have a plan B.
The biggest challenge is managing my sleep and stress. Both are very influential in flare-ups of symptoms. I should get at least 8 hours of sleep, whatever the circumstances. And I try to incorporate time to de-stress, such as reading a book or relaxing at the end of the day.
Going to therapy helps with stress, too, and is now part of my ingrained self-care schedule.
social life strategies
My co-workers, family and friends are very understanding. But this was not the case at first. The more open I am about Crohn, the more people will understand that I don’t understand 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 put into social situations.
I plan what I feel comfortable doing, but I also become comfortable changing plans. Even if I’m excited to go out to dinner with a friend, I don’t pressure him if I feel awful that day.
food in the flow
I’ve been following a gluten-free diet for years. I started an elimination diet and realized that gluten bothered me.
Other foods are not like black and white. I can eat a salad one day and it’s okay, and I eat the same salad the next and it makes me sick. I repeat safe foods that don’t make me sick and stick to a general schedule of three meals a day that are completely gluten-free.
Sometimes timing matters: I’ll wake up feeling nauseous and need a starchy food like dry cereal. If I’m going on a road trip, or I have a big event, like a wedding, I plan on it and try to be careful about what I eat before that because I don’t want to get sick. But it’s hard because you never know. It is a kind of gambling.
Flexibility is the key
I have learned to be as flexible as possible. Never knowing what each day will bring, I have to trust my body to tell us what it needs on that particular day. This is my priority, and everything else can wait.