The Journey of Faith ~ My Daughter’s Journey with Crohn’s Disease
“…they diagnosed her with Crohn’s Disease.”
Your heart breaks when your child is sick. Even when they just have a runny nose. But when it’s something worse and you don’t know if they’ll get better, how do you cope? How do you help them cope?
When your local doctor sends you to the Children’s Hospital, you fear the worst. Now it’s not just a runny nose, a virus or something that an antibiotic can make better. We’re facing the unknown. What will they find…cancer? Will she be OK? Of course all of these questions went through our head. She’s our baby.
My daughter’s journey started 4 years ago right around her 3rd birthday. She had been running high fevers and high white blood count. But the local doctor couldn’t find anything to explain it. So we were sent to the Children’s Hospital an hour and a half away. We saw every specialist in the hospital and they did every test under the sun, poking and prodding but came up empty handed. No cancer diagnosis so we thanked God for that!
The last doctor came in and said that in these cases when they don’t have a diagnosis, it could be Systemic Onset Juvenile Idiopathic Arthritis. However, he couldn’t be sure. After being in the hospital for over a week and a half without a diagnosis, we finally said enough and took her home. We did a lot of praying with family and friends. The fevers broke and the symptoms went away. Still we had no diagnosis.
She was fine for a full year until right after she turned 4. She started having diarrhea several times a day and then blood in her stool. We were again sent to the Children’s Hospital. They did an endoscope and right away they diagnosed her with Crohn’s disease. We were a bit relieved because, again, it wasn’t cancer.
Little did we know the journey she’d have ahead of her.
Crohn’s disease is a lifelong inflammatory bowel disease (IBD). Parts of the digestive system get swollen and have deep sores called ulcers. Treating the disease can be difficult because the body doesn’t always react to the medicine or it will work for awhile and then stop working. They will use anti-inflammatory meds and meds that lower your immune system. Crohn’s disease also makes it hard for the body to absorb nutrients.
Faith has had a long, hard road since her diagnosis. She has so far been hospitalized 5 times (as you can see by the picture, once even over New Years.) Most of the stays are on average 10 days or longer.
Because her medicines lower her immune system, we have to be very careful around any germs, viruses, etc. A normal cold or stomach bug could land her in the hospital. Two years ago she caught CMV and was in the hospital for 2 weeks. Almost had to be in the PICU. To normal healthy people, CMV isn’t a problem but to Faith, it attacked her lungs and gave her pneumonia, skin with a pox type rash, she was running high fevers, etc. It was really serious. The only medicine to make her better was an antibiotic that had to be administered by nurses wearing protective gowns. Like hazmat suits. I still shudder thinking about it.
Faith has been on prednisone on and off for the last 3 years. If you’ve ever had to experience prednisone, you know that it’s a miracle drug with terrible side effects. She gains weight on it, has mood swings, anger issues, doesn’t grow (she’s 7 but looks more like 4 or 5), can have bone issues, etc. etc. etc. The doctors are now worried about the long term side effects and are rushing to try to get her off. But any time we try to get her off, she has a flair-up again.
When she’s having a flair-up, her body doesn’t absorb nutrients and she is usually low on iron. Her appetite is usually poor too so it’s hard to get her to eat well. She’s had to have several blood transfusions as well as iron, lipids and one albumin which is protein. All of which have to be done in the Hospital or clinic that is an hour and a half away from our house. It’s tough on the whole family. Her brothers and sister are affected by her disease too.
Her pediatric specialist has had a hard time finding a medicine to work for her. She’s been on 4 so far. We just saw a pediatric specialist at the Mayo Clinic for a second opinion. Right now she’s taking 2 different meds that have to be given by shot. Once a week that we do at home. Plus on top of that she also has to get a lab draw once a week so she gets 3 pokes a week. Through all of this she remains strong. I don’t know how she does it at 7 years old.
The picture of her with the necklaces are her bravery beads. It’s a great program that the Child Life does for the Oncology and GI patients. She gets a bravery bead for every procedure, office visit, poke, etc. that she has. She has way more than that now. We’re almost on our 4th necklace.
Every once and awhile when she’s feeling really yucky during a flair-up, she does get down…she’ll say to me, “Why do I have to have Crohn’s disease.” I don’t know what I should say to her but I say, “Because God made you special.” What else can I say? She accepts that and knows that she is special. No one should have to go through this disease.
I’m writing The Journey of Faith and about my daughter’s journey with Crohn’s Disease because I’d like to create awareness. The Senate just passed the first Crohn’s and Colitis Awareness Week,Dec. 1-7, (2011) to help raise awareness about Crohn’s disease (CD) and ulcerative colitis (UC). Many people are being misdiagnosed or are going undiagnosed. In fact, a part I left out at the beginning, when Faith first started having GI issues, I took her into the Urgent Care clinic over the weekend. The doctor there said she had hemorrhoids and sent us home with suppositories. It wasn’t until I took her in the following Monday to her regular doctor that she sent us to the Children’s Hospital.
This disease is robbing my daughter of her childhood. She is a fighter and she will make it through it but she’ll have to deal with this disease for the rest of her life. I pray that they will find a cure for this disease. I’m sure that any parent taking care of a child with an illness can relate.