Posted by ImproveCareNow on March 03, 2016
When my son was diagnosed with Crohn’s Disease in 2014, he was 10 years old. I knew something was terribly wrong with him for a long while but had to wait many months to see a GI. By the time he was diagnosed, he had lost so much weight, could not eat and was a skeleton of his former self both physically and emotionally. Long days in the hospital were spent researching every treatment modality from every country that published scientific papers. I was told that he had to go on steroids for the short term until other medications could begin their work. Somehow, my gut told me that this was only part of the treatment story. Instead, I asked repeatedly about enteral nutrition. I was told that it would not work. The Dr. even drew out a graph for me on a smudged white board. I kept asking “why does it not work in the U.S when it works in other countries?” The doctor avoided answering me directly but, eventually conceded that Americans like to eat and prefer to take pills. O.K., now that is a real answer!
Thankfully, my son does not “love” food. I struggled his whole life to get him to eat different foods and now I was about to tell him that he no longer had to eat for quite a while. I knew that if any American could make this treatment work, it would be him and I would be right with him. The catch was that the formula smells and tastes nasty. He was not OK with a NG tube. The doctor wanted him to keep the tube in for 3 months to prove that this treatment may have some benefit. This was not going over well with my son. In a bold move, I asked if the surgeon would at least consult with my son about his preference for having a G-tube placed. The bright blue eyed man with skilled hands and a way with kids came and sat on his bed for nearly an hour.
He spoke with him about the reality of his disease and the benefits/ drawbacks of having a G-tube. He was impressed with my sons knowledge, ability to articulate and willingness to do what it takes even if it means feeling like he got a musket to the gut for a while. His surgery was scheduled for 2 weeks later and was a success. He immediately began gaining weight and getting color back. He ate very little solid food as we were told to try to maintain 80-90% of calories from formula.
It was immediately clear that the diagnosis of Crohn’s was not just for my son but, for the whole family. We were all on this journey together and no one complained because he is our son and brother and he would do the same for any of us. The family who heals together, stays together. No one ate solid or yummy food in front of him and we made no food smells in the house for a long time. Many people in our outer circle criticized the decision insisting that dinner time was “important” and that it was unfair for the rest of us. My response was, “Dinner time can be replaced with game time and what is really not fair is getting a life altering disease at 10 yrs old. Life is not fair.” The other comments that came along were about having him live a “normal” life. A week with Crohn’s and you know that life will never be the same. The word “normal” is a setting on a washing machine and does not apply. Many should’s and should nots later, I plugged my ears and followed my gut in response to his gut.
My son grew so well on enteral nutrition that I was told by his nutritionist that they “had not seen such linear growth in a child with Crohn’s!” One and a half years later he is a normally developing young baritone who expresses his love and gratitude on a daily basis through words, hugs for dad, kisses for mom and licks for his sister.
Unfortunately, he ended up with Crohn’s in his large intestine last summer. Remarkably, the rest of his GI tract was in great shape. The disease was too far down to be treated with formula alone. He began taking Methotrexate and reached remission quickly. We decided to keep on with the enteral nutrition because it works very well for the first 4 organs and also helps to prolong the effectiveness of every other treatment modality. The reason this works is that the formula is hypoallergenic. When there is nothing for the immune system to mistake as “bad”, then there is no reason to attack. In this way, we can keep him on minimal medication.
The ability to succeed with enteral nutrition is largely based on social and emotional support. Allowing an older child to help make treatment decisions and experiment goes a long way with maintaining compliance. The first 6 months were a bit hard but now he has begun to develop his own mostly vegetarian, hypoallergenic diet for the food he does consume. It takes time for kids to make the connection between consumption of an irritating food and an immune response. As parents, we remain a positive force through our example and patience.
Crohn’s has changed all of us and in many ways for the better. We are closer, stronger, healthier and much smarter. My son may live with this for the rest of his life, or he may be the man of sheer determination who is an integral part of finding the cure. Either way, HE is not this disease and I hope he does not grow up to be just “normal”.
p.s. I just want to say a big thank you to all the awesome heroes in the Smart Patients IBD Community – connecting with you all has been so useful!
[Editor’s note: We asked our community to share their stories of Exclusive Enteral Nutrition (EEN) and what they wished people understood about it. We received three stories; this is one of them.]