Hi Family and Friends -
Please join us in supporting a cause near and dear to our hearts - 'Take Steps for Crohn's & Colitis'. As you may or may not know, I, Shannon, have been living with Ulcerative Colitis for 18 years now. Thankfully, I have been in remission for many years. Our son Ian, was only 6 years old, and in kindergarten, when he began experiencing abdominal pain, vomiting, and intermittent fevers. He was diagnosed with Crohn's Disease of the stomach, duodenum and cecum in May of 2015.
He was initially treated with prilosec, prednisone and Pentasa, and had resolution of his symptoms. His symptoms returned by 10/2015, and we tranferred his care to U of M 12/2015. He was started on Imuran 1/2016. He initially did well, but the abdominal pain and fatigue returned 7/2016. We repeated his EGD and colonoscopy 10/2016, and in addition to the ulcerations and active inflammation in his stomach, duodenum, and cecum, he had new lesions and inflammtion in the spenic flexure, ascending colon, terminal ileum, sigmoid and rectum. He started Remicade infusions at Mott Children's Hosptial 11/2016. He responded well initially, had infusion reactions with his 3rd dose, and despite several premedications, had a life-threatening reaction with his 4th dose. He developed high levels of antibodies, likely due to his body clearing the Remicade too quickly. Because of this, he can no longer use this drug now or in the future. We were saddened that we only got a few months out of it, as we were hoping to get several years.
He switched over to a similar drug, Humira on 2/23/17. His first 3 injections were done at U of M, and I have been giving him the injections at home ever since. He was initally on once weekly injections, but his levels have been great and we were able to go down to every other week injections. It was quite an ordeal at first, but he has since gotten used to them, and they have become much easier. They are using adult dosing, as they believe he has a higher clearance of this type of medication, and to prevent antibody formation. Since starting the Humira, he's had some very low white blood cell counts, but his dr believes it's due to the Imuran, so we've had to adjust dosing on that and monitor CBC quite frequently to make sure counts do not go too low. He needs to continue taking Imuran with Humira because this combo helps to prevent antibody formation to the Humira. In May 2018 he began developing nasal symptoms of sores, crusting and bleeding. His GI dr thought it may be the beginnings of nasal Crohns. We use Bactroban to try to heal up the sores. He also started getting sores on the corners of his mouth. His dr discovered he was deficient in Zinc, and since supplementation, this has improved. His last appointment was in November 2018, and all of his labs looked great and he has been feeling well with lots of energy.
It's hard to believe that it's been 2 years since starting the Humira. Everything was going so well, until February 2019. Symptoms returned along with elevated inflammatory markers (the highest they've been yet). We just had an MRE and upper/lower scopes done, so we are waiting for the biopsies to formulate a plan for him. We are saddened that the Humira may no longer be working for him, as this is the last treatment that is available for his age. This is why this walk is more important to us now, more than ever before. The funds raised for the Crohn's & Colitis Foundation will be used for research for new treatments, and potential cures for this incurable chronic disease. We have faith that new treatments will become availble for Ian, should the Humira fail to work or should he deveolop antibiodies to it.
Please consider making a donation to our team, 'Fighting For Ian', and supporting this worthwhile cause. Also, feel free to join us in this walk on Saturday, June 8, 2019 at The Southfield Civic Center Complex in Southfield, MI.
Thanks for reading our story, and feel free to share!