The Crohn's Diagnosis

My plan is on Mondays to make it my nutrition/health day. I will post on recipes that we love which will be gluten-free, organic, & nutritional. Also, I will blog about my sons journey of being diagnosed with Crohn's and his road to getting healthy. 

      I want to start with my sons diagnosis. He was eight when I really knew something was going on. He had been having stomach problems for about 6 weeks and then severe cramps started. He began to fatigue easily ( this was a kid who was in very competitive sports and active). His muscles and joints began to hurt all the time.  I made an apt thinking he had a bad virus or something along those lines. After stool samples revealed white blood cells, blood work was ordered. They ruled out salmonella and giardia and we were referred to the Gastrointestinal Specialist at Children's Mercy. After meeting they ordered more blood work and a few days later they called to tell us his SED rate was incredibly high. This is a marker used to test the inflammation in the body. They then told me that he would need an upper and lower scope to figure out what was going on. This revealed ulcers both in the upper intestinal track,  esophagus, lower intestinal track, everywhere they scoped were ulcers and inflammation. They were able to narrow down his diagnosis between several diseases but had to then do a capsule study to give an exact diagnosis. This entailed him having to swallow a large pill that was a camera that would record his entire track so they could see every area. We were on vacation when I got the call that they hadn't received all the results from the test the biopsies etc. and determined that he did indeed have Crohn's disease. When we returned he went through one more test to determine the severity of damage to his intestinal wall this was done through an MRE. Although it seems as though things moved pretty quickly, this diagnosis was after several months, and many doctors appointments. Well before our final diagnosis we had completely taken him and the entire family off of gluten which did seem to provide relief to him. Later through blood work we did learn that he was also "allergic to gluten. " After his diagnosis I met with a dozen different people at children's Mercy to discuss his plan. There were doctors to discuss the medication, doctors for nutrition, people to discuss what to expect day today. It was a crash course. 

     It was recommended him start on several different medications but the research I declined some due to their side effects. We opted for Pentasa, and hyoscine for cramping. The next year and a half were a roller coaster of up-and-down with his health and trial and error for what his body needed. One thing I've learned is stress is a huge trigger! And he is an internalizer. He's big and strong on the outside but let things build inside. His start of his fourth grade year brought challenges with a new student dynamic. Without going into detail it was every day issues with this new student issues. By the time January hit he was not doing good with his health. Another scope was ordered and we were given a few options from the results. One option was to greatly increase his medication and add several other new medications. Second option was to hospitalize him, and put him on an IV until his intestinal track could heal. The third option was to completely take him off of food and do nothing but a liquid diet for six weeks to try to get his intestinal track to heal, this would be in addition to the medication. We left the hospital with telling them that I needed to think for a few days on what the best option was for him. After much prayer I felt led to decline all three options. I just truly believed that he could be healed in a natural way. I researched and read a ton and tried to find anything I could on people and using natural methods to heal IBD.  Now, telling this to his doctors and nurses was a whole other ballgame. They thought I had lost my mind. I got yelled at by doctors, told flat out I was crazy and making a horrible decision by nurses and called over and over again to tell me that I should not be making this decision for him. I will go into detail in a later blog about the steps we took and the things and supplements we put him on. But I'd like to fast forward to September when I took him in for a check up.

      It was awkward going back to the doctors. But we needed to make sure that inside things were ok. They did the usual blood work and his levels looked great. Our doctor said his blood work came back like a "normal" kid. She encouraged another scope and biopsy to be able to determine if he really was as good as he seemed. The doctor that did the scope came in to the waiting room and showed me the pictures and it was awesome. Everything internally looked great and she even said if she didn't know he had Crohn's she would never guess by looking at the pics. Of course we had to wait for the biopsy results. 5 days later his doctor called. She was in shock and said they had just had a staff meeting discussing my son. His biopsy results had come back and there was not one marker of Crohn's. She went short of saying he was healed but said everything but that. Our prayers were answered and we finally had a healthy son. 
      I will go into much more detail in the future but I want to give a quick rundown on things we did and still do on a daily basis. First was diet, gluten had to go. Next was adding more vitamins. Zinc, Curamin, Turmeric, CoQ10, L-Glutamine, B6, B12, & Vitamin C are some that he takes daily. Probiotic is a must and he also takes pre-biotic. He also has an infared mat to lay on in case of cramping. This is like a heating pad but that penetrates deeper. Lastly, I started diffusing essential oils. I do it while they sleep, during the day and even in the car. 
    I want to end by saying, I am not a doctor and in no way trained in medicine other than being a mother who has read extensively and researched all I can. I hope others can learn from our success and failures and pray that some of the methods that have worked for us will work for others too.