A year ago today my husband and I drove our son to the hospital for yet another test. This test was different though. It was being done by a specialist who seemed to already have answers for us. It was being done by a doctor who took one look at our child and recognized how severely ill he was. This test was going to give us some answers.
For months we had been watching our son waste away and suffer. He had bypassed thin and made his way to skeletal. He was pale and weak. He had endured examinations, blood tests, and multiple IVs to restore the fluid he needed. He had missed weeks of school and lost the chance to take part in sports and other activities. Despite all of the time and tests, we had no idea what was wrong with him. Until March 19th, 2013.
One year ago today we got our answer. Kellen had Ulcerative Colitis and was admitted to the hospital that day. It was the beginning of more tests, new medications, new diets and a huge learning curve. It was the day he started to get better.
So what is Ulcerative Colitis? It is an extremely misunderstood disease, so I’ll start with telling you what it is not. It is not “tummy troubles”. It is not IBS. It is not something that can be cured by changing your diet, or really cured at all.
Ulcerative Colitis and Crohn’s Disease are both forms of IBD (Inflammatory Bowel Disease), not to be confused with IBS (Irritable Bowel Syndrome). Ulcerative Colitis is an autoimmune disease. Without warning the large bowel (with Crohn’s disease the entire digestive system can be diseased) develops ulcers that bleed. These ulcers are painful and the bleeding causes diarrhea and anemia and the diarrhea causes weight loss and dehydration. The damage to the large colon puts the affected person at a higher risk for colon cancer, a condition that is far too common for people with UC. The only “cure” for Ulcerative Colitis is to remove the large colon which involves placing a colostomy bag. Ulcerative Colitis can eventually be determined to be Crohn’s Disease if it presents in a part of the digestive tract outside of the large colon, and in some cases this isn’t discovered until after surgery has been performed. IBD is a lifelong disease that can be debilitating. Left untreated, IBD can be fatal.
The treatment plans for IBD present their own set of challenges. My son takes many pills every day, and that is challenging for a child. Steroids are generally the first course of treatment for a flare, and for some people this is enough to get them into remission. For my son they were somewhat helpful, but not enough. They did make him gain 40 lbs in two months. That is hard for anyone to deal with, but it wreaks havoc on a child’s body. Joint pain, stretch marks and insecurities plagued him.
Steroids did not get my son into remission, and he’s not officially in remission yet today, but we did find a treatment that has helped him make great strides. Immunosuppressants and biologics administered by IV have improved my son’s health and life. It took nearly a year for him to gain weight without the use of steroids, but it finally happened last month. His medication causes fatigue and joint aches and puts him at a high risk for other illnesses. Despite all of this, it is our miracle drug and we are grateful for it.
Kellen continues to struggle with his weight and we are continually learning what food will and will not cause him problems, but he is learning how to manage his disease. His future looks bright! To help raise awareness for IBD and money for the Crohn’s and Colitis Foundation of Canada, we are taking part in the Gutsy Walk this June.
Using humour and my son’s love of Star Wars as our inspiration, we chose the team name The Stormpoopers and made a team for the walk/run. We would love your support! You can donate by clicking the button below. Credit cards and paypal are accepted and tax receipts are provided.