The Truth about Crohn's Disease

I am the mother of a 23 year old daughter, Destinee Fowler. She was formally diagnosed with Crohn’s after her senior year of high school (2013). She had just turned 18. Prior to this she was in & out of the hospital due to constant pain in her right side of her abdomen.

It all started when she hit puberty stage; at least the hospital visits & numerous tests. Actually, it turns out when she was a baby she showed signs at that time just didn’t realize the connection. As a baby she was considered colicky, had to take gas drops, baby suppositories, & went through various types of formula before finding one she could tolerate. Even then we had to add Karo Syrup to help her poop. She would be so gassy (her tummy would be hard as a rock) I would have to hold her down-ward with my hand along my arm & just massage her back to try to help her pass gas. I even took her to the chiropractor. That would help some. Just nothing helpful lasted.

So our journey led us to doctors telling us she was crazy, just constipated, even hungry, & once a hospital wanted to remove an ovary because they thought her condition was female orientated. I was horrified. I did not allow this. I let GOD take over & started with other doctors. Do you know how hard it is as a mother watching your child be in severe pain & people telling you nothing was wrong or she was crazy? It is awful! I felt helpless; but I never gave up. I would read about stuff, tried alternative methods to help my child, & just stayed on top of the doctors. I am sure lots of medical people disliked seeing me. I wasn’t always nice and polite about it. I wanted answers for my child’s suffering!

Finally, a late night visit to our local ER after a CT scan a resident doctor came in & asked if anyone in our family had Crohn’s. To my knowledge I was not aware of anyone & at the time I had heard of this disease but always thought it was an “elderly disease”. He gave her steroids, pain meds, & referred us to see a gastro doctor at Arkansas Children’s Hospital in Little Rock, AR. Thus our Crohn’s journey started.

Arkansas Children’s Hospital (gastro dept.) ordered her first colonoscopy. It was clear she had Crohn’s & most likely had been suffering from it for a LONG time. So turns out she was misdiagnosed all the previous years. Needless to say they started her on steroids which those alone caused our life to be a living HELL! I firmly believe steroids are like the devil!

My daughter was a slim, trim build and when they pumped her full of the steroids she blew up. This totally messed with her self-esteem. She completely changed just like Jekyll & Hyde. Her mood swings, the depression, & just total behavior was a roller coaster. I saw my beautiful, outgoing daughter just turn completely inside-out! It is so hard for a family to deal with this. During all of this she had to counsel with shrinks & there was one lady that was her counselor at children’s & I will never forget what she said. She told us the person that Destinee would lash out the most was the one who she loved the most & could handle it. That “lucky” person was me, Michela, aka..Mom. I cannot begin to put into words what I have endured. Only families that have been through this can completely understand. All I know is this is my daughter & I’ve got to be there for her & help her. She was my only baby!

We received great care while at children’s; but then she legally became an adult. They could not treat her anymore so we had to start all over. They referred us to UAMS. That was the worst experience for her & us. Thus we had to look for another doctor. I will leave out those details…

This next journey takes us to another gastro doctor. At first all was ok & for the last 3 years Destinee has been in remission (I call it that). She had been off meds & seemed to be doing ok. All of sudden she started having this pain on her right side. It was totally different from past flare-ups so she was afraid she had hurt herself. She started at our local doctors nothing showed up as far as fractures or like that. The pain got so bad we had to make an ER visit; CT scan shows Crohn’s flare-up. We followed up with her latest gastro dr & we just seemed like we weren’t getting the help needed. So after 2 different hospital stays we were now referred to a surgeon in LR who then referred us to her new dr. Now our new journey begins…

The latest CT scan shows a fistula. Basically, the Crohn’s has progressed to a new level. She just had a colonoscopy. It does appear this new doctor knows his Crohn’s & I pray Destinee gets some relief soon. At least we have a game plan. Our goal is to get her started on Humira injections.

So many people do not understand the severity of this silent disease. There needs to be more awareness of this life changing disease. It affects so many different people & their families. People need to be more compassionate to diseases like this. Just because someone looks fine on the outside does not always mean they are. One minute you may be fine & the next you are not. Symptoms vary with each person. There are days you don’t even want to get out of bed; when you are like that you sure do not want to be social with anyone. Others need to be patient with our loved ones battling these silent diseases.

I continuously pray for a cure, her to go back into remission, & I pray for others struggling with this silent, unseen disease.

Mother of Crohn’s patient – Michela Fowler