Fighting with Food, A Battle Against Crohn's
I have sat down numerous times to write this post and I seem to fall victim to the same cycle every single time. I sit down to write and somehow the thoughts become clustered together in my mind and they never make it to my fingertips. Instead, I sit and stare at the empty white pages of my laptop and the blinking cursor with its slow rhythmic beat.
While I’ve heard of Crohn’s Disease and could probably rattle off a decent definition to a stranger, I never thought this very disease would consume my life. I never thought I would say that I have a child with a chronic illness and I certainly never thought our life could change so drastically in such a small window of time. But the fact is I do have a child with a chronic illness and our life has changed drastically. I would give anything to go back in time but all we can do is go forward. A concept I am still coming to terms with.
A few weeks ago our nine-year-old son was officially diagnosed with Crohn’s Disease. In the beginning the symptoms were minimal and could have easily been blamed on other ailments, but shortly after his diagnosis the symptoms quickly emerged.
Crohn's Disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. Symptoms often include: abdominal pain, diarrhea (which may be bloody if inflammation is severe), fever and weight loss. Other complications may occur outside the gastrointestinal tract and include: anemia, skin rashes, arthritis, inflammation of the eye, and tiredness. Bowel obstruction also commonly occurs and those with the disease are at greater risk of bowel cancer. There are no medications or surgical procedures that can cure Crohn's disease. Treatment options help with symptoms, maintain remission, and prevent relapse.
Out of nowhere these symptoms hit our son and turned our life upside down. I was lost and confused and felt like a spectator in an empty arena while my son suffered daily. I quickly realized this is the battle he would be fighting for the rest of his life.
Every case of Crohn’s is different and for our son stomach pains and cramping are the reoccurring symptom that intrude on his days. Watching your child in such pain is like a dagger through the heart for a mother. When you watch your child writhe around, moan, cry and even scream you fall into a dark space of helplessness. There are no words for when you watch your husband carry your nine-year-old son out of a restaurant because he is in too much pain to walk. I tried spending a week in depression but quickly realized that didn’t get me anywhere. Looking back I can see I was going through the grieving process. I was in denial, I was sad, confused and mad. Really really mad. How could this be happening to us and to my son? My healthy active soccer- playing son?
Well, as you can imagine, the soccer is on hold and after four consecutive weeks of missed school I stopped counting. I focused on whatever I could to take away the stomach cramps and to keep him caught up on his studies.
When your child is sick it’s hard to accept the reality, especially when they are sick with a chronic illness. Our son had several hospital and doctor visits, he’s had minor surgery, he’s spent the night in the ER and he’s had second and third opinions all in a matter of a few weeks. He’s had every test and procedure related to gastroenterology and has been pumped full of codeine, steroids and other meds to get this flare up under control. Codeine for the pain, steroids to bring down the inflammation, Prilosec to counter the side effects of the steroids, antibiotics and a maintenance drug (Pentasa) that we hope and pray will work.
We’ve had two doctors advise us that our next step is an intravenous drug called Remicade. The Remicade infusions would be administered every two weeks in the beginning and then eventually spaced out.
This is the path we were hoping to avoid. It’s not that we don’t believe in modern medicine, because we certainly do, but we will try everything in our power before scheduling infusions. The thought alone is scary and the side effects even scarier. Once you start this treatment most patients don’t stop. It’s advised not to stop because your body can build up antibodies against the drug and in the future it may not work.
This is where we are now, at a standpoint where two roads diverge and we are left with some serious decisions. At this point, we’re fighting with food and taking it one day at a time. From our very first appointment with the GI we were told food has no impact on this disease, but we’ve seen with our very eyes that it does. There may not be much research out there, but there are certainly believers and testimonials that diet can put Crohn’s into remission. Will it work for us? I have no idea. In case it doesn’t we are ready to go on Remicade. We’ve made all the steps and just need to schedule the appointment.
But we aren’t there yet.
Our son started an IBD (irritable bowel disease) diet called Specific Carbohydrate Diet (SCD) on October 29th. That same very night he was admitted to the hospital because his stomach pains were so severe. Over the course of this past month his pains have slowly subsided and last week (November 24th) was his very first week back to school. We’re still on a rocky road and are now battling daily headaches and emotional outbursts that we believe are a side effect of the steroid. Under the doctor’s orders we are weaning off the Prednisone, which will be a true test. In addition to diet we also see an acupuncturist twice a week and feel we are seeing results. Something has made the pain subside but the question is what is that something?
The beginning of December marks the fourth month we have been battling this flare up. We have had many ups and downs and are determined to get our life back on track. We are determined to get back into the routine of school and we’re determined to pick up that soccer jersey and get back into the game. Crohn’s disease may have us down now but it won’t have us down forever. Our son is not alone. There are many children and adults out there fighting the same battle and we will always be by his side. Always.
December 1st -7th happens to be Crohn's and Colitis Awareness week.
Today, I share this post with you to raise awareness for those who suffer from these diseases in hopes that one day there will be a cure.
I wanted to say a huge thank you to all our friends and family for the loving support you have shown over these past few weeks. This journey would be much more difficult without you.
Here are some helpful links for friends and family:
Breaking the Vicious Cycle, the book that the SCD diet is based on
Crohn's and Colitis Foundation of America
While there aren't many studies out there about diet and IBD, this is VERY interesting
A positive,heartfelt story because we all need some optimism :)
And a few blogs that I find inspiring:
No More Crohn's For Me