Hello, my name is Paige. My son, Justin, was diagnosed with Crohn’s Disease in January, 2011. He has now been on the SCD Diet for seven months. Justin has been symptom free now for five months. I would like to share our Crohn’s journey with you.
When I started potty training Justin when he was 2-3, he started having blood in his bowel movements. Our pediatrician referred us to a Pediatric GI in Dallas, Texas, a couple of hours away from where we lived in Texas at the time. Justin had four colonoscopies between the ages of 3 and 4 while trying different medications. He had inflammation of the intestines and ulcers. His GI doctor told us he had early signs of Crohn’s Disease. Justin was on numerous medications for the next couple of years and didn’t have any other symptoms while on the medication. I remember being told during this time that when children have Crohn’s this early, they don’t live past their teenage years, which I now know is false, but this was always in the back of my mind.
Justin was in the middle of his Kindergarten year at school when we moved back here to Georgia. We started with a new Pediatric GI doctor. After reviewing Justin’s records he believed Justin’s problems were due to food allergies and we removed him from all of his medications. After allergy testing, Justin showed positive to be allergic to milk, chocolate, nuts, pea/beans, corn, and tomatoes. During the few years Justin has been off of his medication, he has had signs of blood pretty regular around every 6-9 months. We figured it was due to something he had eaten. He has had times that he has had severe stomach cramps and bloating. We always thought these were signs of regular stomach aches and pains everyone occasionally has. But looking back now, I see it to have been different.
It was November, 2010, that Justin started to have reoccurring bleeding. In January, Dr. Cohen decided it was time to do another colonoscopy and go back in and see what was going on. Justin’s colonoscopy showed signs of inflammation and ulcers again. Before making a diagnosis, Dr. Cohen did a pill camera test to see the small intestines to help verify what the biopsy also showed. And in January, 2011, Dr. Cohen informed me and my ex-husband that Justin did have Crohn’s Disease.
It’s hard to explain my reaction to his diagnosis. This disease was something we were told when he was a toddler that he was developing, and we had read up on it and accepted it. Then we were relieved to find out, or so we thought, that he didn’t have a disease and it was just food allergies. NOW, we were being told AGAIN that Justin did in fact have Crohn’s Disease. I can’t tell you how grateful we were that he did not have cancer or another terminally ill disease. We were familiar with Crohn’s, but after reality kicked back in, it’s still hard for a mother to look at her baby boy and know that he has to live with this the rest of his life.
First thoughts run through your head, why does he have this? Was it something I did wrong? Too many antibiotics when he was little? Dr. Cohen told us we had two options, medications or try the SCD Diet Test Study. As a mom, I was more than happy to take on the diet. Dr. Cohen was giving me, Justin’s Mom, a way to help heal him. It is the least I can do for my son!
Every day I see the SCD Diet as an opportunity to possibly take away something that can negatively affect my son for the rest of his life! I thank God for this opportunity to help my child and have to put faith in him that this will work!
Justin was upset after first being diagnosed. He started asking lots of questions about dying and what if he gets another disease. Justin even started making a “bucket list”. But we have reassured him that we are doing our best to control his Crohn’s and that he has nothing to worry about.
As I mentioned earlier, Justin is now 10-years-old. Our last pill camera showed that his intestines are like that of any other healthy 10-year-old. He has been symptom free since April 13, 2011. Justin counts the months and days until one year has gone by and he can start eating other foods. But I cannot tell you how GREAT he has been on the diet! He has never complained about the foods he has to eat. He LOVES having me cook just for him. We all say we never could have done it if it were one of our other kids. Justin has been a real trooper!
And I could not have made it through the first few months of the diet without Angie! Having someone there to sympathize with you and know what you are going through was a God send! I could never thank her enough. And thanks to Kathy for introducing this diet to Dr. Cohen and for all her help! She has always been there when I’ve had questions or needed help. And let us all not forget Nurse Angela! I’ve never met a health care professional that was so personal and caring for her patients. Thank you!
Paige & Justin