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Home / Community Blogs
A Nurse Named It . . . Hendrix
Three and a half years ago, my son, Nick got sick. He caught a cold when he was studying for college finals. He developed gastrointestinal symptoms and just didn’t get better. After dropping his hemoglobin 5 grams (from bloody diarrhea) and losing 15 pounds, he was admitted to the hospital. At 20 years old, he was diagnosed with ulcerative colitis.
Initially, Nick thought that he would just have to take medication every day and he would be fine. For those who are lucky enough to go into remission and are able to maintain it without flare-ups, this is truly the case. But Nick wasn’t so lucky. By the beginning of the fall semester, the full implications of the disease were starting to sink in. For an article on what it is like to live with UC from the patient’s perspective, click here.
In spite of it all, Nick managed to go skydiving on his 21st birthday. He was committed to trying to keep his life as normal as possible and wasn’t willing to give up something that he had planned on for so long. In spite of being a model patient and having the best gastroenterologist; he was never free of symptoms.
Two and a half years later, he was on the maximum doses of Asacol and 6mp; and was still unable to be weaned off of the prednisone. Unable to hold down a job and with great difficulty attending school, we looked for alternative therapies. He started taking fish oil and I researched modifications in diet that promised improvement. I started crushing almonds to make flour, making homemade yogurt every week and cooking with honey to avoid sugar. It didn’t seem to make any difference in his condition and he hated every bite of it. But the final blow came when his bone scan indicated that he had developed osteoporosis from the prednisone. For the first time, since he had been diagnosed, Nick was discouraged and depressed.
He had come to a crossroads and had to decide between starting Remicade or having surgery. With surgery carrying the risk of serious complications and Remicade making him susceptible to infections, it was a difficult place to be. After a great deal of research and the opportunity to speak to someone who had actually had J-pouch surgery, he made his choice. It wasn't an easy decision and even though we believed that it was the best possible option for him, we remained apprehensive about the eventual outcome.
The first surgery took 6 hours. If you click here, you can see a representation of what the surgery entails. It wasn’t an easy recovery, but Nick did what he had to do and got through it. For three and a half months, he had an ileostomy. One of the nurses at Hoag Hospital named it Hendrix (after the famous Jimmy) and I found myself calling it that too until after the reversal. Living with a stoma is a difficult thing; it is messy, noisy, embarrassing and can make the simpliest things, like taking a shower, very difficult. The second surgery (the take-down; which involved reversing the ileostomy) took place in June and for Nick, was an anticipated relief.
It’s been 4 months now and things are going really well. Nick is back in school, playing music with his band and no longer stays home all the time. What a difference a year makes and in my son’s case, its been a difference that is life changing.
One of the key things that we learned is that patients with chronic illness like UC begin to view their symptomatic condition as normal. It's difficult to constantly be working toward getting better, but expecting a normal life is what they need to do. We are really glad that we didn't give up, we worked with the doctors, educated ourselves and kept a focus on Nick having a normal life again. The best doctors will tell you that UC patients should be asymptomatic and they make that their goal in planning your care.
For more information on ulcerative colitis, check out the NIH website, the Mayo Clinic website and CCFA.
For a great photo series compiled by Mark and Megan, as Mark was going through the process, see UC to J-pouch. This was a really helpful resource for Nick. Here we could see what would lie ahead and even though Mark had some difficult days, it gave us hope seeing that he was able to snowboard again. According to his online journal, snowboarding was something that he had not been able to do since before he developed ulcerative colitis.
I wrote this blog with Nick’s permission. He recognizes that when you have a disease like ulcerative colitis, it’s important to hear from others who have it too.
Healthcare providers are great when it comes to clinical information, but they don’t know what it’s really like to live with the disease. The internet has been an incredible resource for us, not only in tracking down the results of the most current research, but in connecting with others who are experiencing the same situation. It’s an embarrassing condition that generally hasn’t been spoken about. In Nick’s circle of friends, few had even heard about it before Nick explained it to them. Now, many who have this condition are starting to speak out through blogs, photos and videos. Having the resources to learn from other patients was invaluable to us. I hope that these links will help others too: