Many of you know that my son, Justin, has Crohn’s disease. I have posted about it before…his journey to finding out he has Crohn’s and the doctor who has saved his life (you can find that here). Justin is 14, a self proclaimed “epic gamer” who loves everything to do with computers, history, people, and the way the world works. About a year and a half ago, his world changed when he was diagnosed with Crohn’s disease and Juvenile Idiopathic Arthritis. We have been battling ever since. Given this week is Crohn’s awareness week, I wanted to give a little insight to this disease and what it means for my son, and all those who suffer from this horrific disease.
My son was born 4 weeks early – eager to get out and explore the world. He started walking at 9 months old and was communicating incessantly by the time he was 2. He is a smart and remarkable kid. He hates sports (which in a household of football fans doesn’t go over well, but is great when having Crohn’s), loves his friends, loves his xbox and computer, loves figuring out who Jesus truly is, and can raise questions that even the most brilliant of minds would have to ponder to answer.
Yet, early on we noticed something was wrong. In fact, at 8 weeks old he started having bloody stools and was increasingly uncomfortable. As time progressed, we noticed that he couldn’t run or keep up with his friends. He constantly complained about pain when moving, especially running. Everyone told us we needed to condition him more, watch what he ate more, switch to organic, etc etc. Over the years, we have been in the doctors office more times than we can count with concerns of diarrhea, pain, infections, illness. Justin was plagued with ear infections, pneumonia, bronchitis, flus, vomiting. He couldn’t run, throw a ball, or even walk around town without pain. One Christmas, Justin had the flu and was so incredibly ill that he became paralyzed from the waist down for three days. We begged the doctors, to help him. They ran a few tests, but were convinced he had growing pains, perhaps suffered migraines like his sister, had a milk allergy, food allergies, etc. It was a horrific season of a mother’s intuition knowing something was going on, and having no one listen to her.
To say we were relieved with Dr. Rabizadeh of Cedars finally coming to our rescue is to put it mildly. It was a weird dichotomy of feelings actually. To finally know what was going on with Justin was amazing, but to hear the diagnosis was not. The doctor told us that we would need to start drug therapy immediately – that would require meds in the form of pills and shots. Justin was horrified and refused. Dr. R. kindly told Justin that if he didn’t do it, he would die. There was no choice. That was hard to hear.
You see Crohn’s disease isn’t merely just diarrhea or the inability to process food. It isn’t cured by watching what you eat. This is a disease where the immune system attacks the intestines and tries to destroy them! Justin has what is called Small Bowel Crohn’s – this is where the immune system attacks the small bowel. It tries to destroy it. The problem with SBC is that you can’t live without a small bowel. If you don’t stop the immune system from eating away at the bowel, there is no bowel and there is no way to process food – so there is no life. This isn’t something you just walk away from and say, “Thanks for the diagnosis.” This is a painful, life long, life altering disease.
Justin’s form is systemic so it affects not just his small bowel, but his joints and his eyes as well. Due to his Crohn’s, he suffers from Idiopathic Arthritis – mostly in his back, hips, knees, ankles and feet. But recently in his hands as well. His eyes are also being affected and without treatment this can lead to blindness.
Justin started treatment a year ago. This is difficult because I think we were thinking this was going to be so great – he would get better! And in fact, his Crohn’s has gone into remission (praise the Lord!!!), but arthritis has not. We have tried going up in meds, tried different meds, different nutritional diets, supplements, etc. But unfortunately, we are still trying to find that magic concoction of all of these things. Justin, has been suffering lately from his immune system being too suppressed, which has led to multiple illnesses and infections – which since he is allergic to antibiotics- makes it very hard to help! Having Crohn’s means finding that fine line between stoping the immune system to the point that it isn’t destroying you, but not so much that it can’t still fight when you get sick.
Crohn’s is a silent disease. You have no idea who is walking around with it. You can’t tell from just looking at someone if they have it or not. My son has been made fun of many times for his lack of sporting skills, his Ensure for lunch, his constant running to the bathroom, red eyes, running to the bathroom, or missing of school. But, what these kids don’t know is the battle he is fighting everyday – and will fight for the rest of his life.
There are so many people that are out there suffering in silence. Please remember that before you make judgements to what you see or encounter. Teach your children to be kind of others, pray for those who are different from you, help and support in ways that are compassionate and loving. Don’t judge when we are trying to find the right concoctions for our son: we are trying everything we can! Believe me! There is NO stone unturned and there are reasons that choices are being made.
My son is blessed to have a team of doctors from Cedars and UCLA (Gastroenterologists, Rheumatologists, Ophthalmologists, and Allergists) all on his side helping him fight this. Along with his loving family (his older sister who constantly gives him piggy backs even at 14 years old when he can’t walk anymore), his amazing friends, his supportive and loving school (we love you Rio Norte), Justin is happy and thriving in ways we could only hope for.
We take each day as a blessing. We take in the laughter, the experiences, the love, the hugs, and just the plain ole time we have each day with him. His silly conversations, his unending love of all things techy, his ramblings of the dealings of World War 2, his stories of funny antics with his friends, and on and on! He is an amazing blessing and we hold him dear. We know that God has a tremendous plan for his sweet life and we put his body at the foot of the cross and give it to the Lord as the Great Physician to keep Justin close and bring him sweet peace and loving joy!
thekremarie.com 