Eighth grade - it's supposed to be when that young teen enjoys being the oldest in the middle school. Lots of events with friends, eating pizza, beginning to stretch the wings. That's what it was supposed to be for the Younger W three years ago, but only one week into eighth grade, events occurred that changed his life, and turned his eighth grade year into a year from hell.
We certainly didn't expect on that Labor Day weekend that the next few months would be so bad. And having it be our child who was suffering, and it being during his early teens, not only did we have to deal with the physical problems, but also the psychological and social problems that rose from him having a condition that needs continuing care.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
If you ask the Younger W what caused the problem, he will unhesitatingly tell you that it was because he ate some Kentucky Fried Chicken. He always has had a problem after eating Kentucky Fried Chicken and would become sick. However, looking back and after talking with his specialist, it probably was just a coincidence that the whole mess became obvious immediately after he ate the chicken.
At first, his symptoms just seemed to be a stomach bug. He had difficulty keeping food down, and he developed a fever. We kept him home from school when the fever got up around 102°.
Very early on Friday morning (around 2 am or so, the Younger W woke me up with a concern after once again having a bout of diarrhea. He told me that he had seen blood. Due to my fatigue, I didn't really ask a lot of questions, but instead told him that it probably was just because of his being sick for a few days. However, when I woke up later that morning, and woke him up to check on him, he again had to go, and again told me about the blood. When he started describing the blood, I knew there had to be a serious problem.
It was too early for the doctor's office to be open, so I spoke to the Ask-A-Nurse who answered the call that was transferred from the doctor's answering service. Ten minutes later, we were dressed and on the way to the emergency room. He was admitted shortly after being admitted into the emergency room, and the tests started. During this first hospital stay, all kinds of suggestions were made as to what could be the problem, and as the tests continued, each idea was proved wrong. With the IV and drugs he was given, the blood loss from diarrhea became controlled, and five days later, he was released from the hospital. When released, all of the ideas except one, e. coli infection (that test took longer to get results) had been eliminated. Because most of his meals before he became sick were prepared by me, I became quite concerned and worked hard to clean the kitchen and keep it disinfected.
However, a few days later the results of that last test came back negative as well. The doctor said since he was now feeling better to just go back to normal routine and that it was probably just a one-time problem. Ha! Two weeks later, we were back at the doctor's office, as the Younger W had started feeling ill again. At this point, he hadn't finished making up the school work he had missed from the first bout of illness and the hospital stay. Now, he was sick again and would miss a few more days of school.
This pattern continued every few weeks until mid-October, when the diarrhea became severe enough that he once again became hospitalized. This time, when he got up in the middle of the night before his visit to the hospital, his ankle and knee weakened, and he fell on his way to the bathroom. When I woke him up in the morning, he couldn't get himself out of bed, he was complaining about sever backache, and the fever was 103° and going up. This time, I didn't even call the doctor first, just helped him to the car and called the insurance company and doctor both in the ten minutes that it took for me to get him to the emergency room. When asked by the nurse the severity of the pain he felt, I was surprised when he told her that it was an 8 out of 10. A few minutes later, he had revised that up to a nine.
This emergency room visit, he was put on an IV for severe dehydration, and the rate he needed was the same rate that the emergency room nurses said they rarely used except for athletes who had become dehydrated during practices. After he stabilized some, he was once again admitted to the hospital, and spent a week before the blood was brought under control and the pain in the other parts of his body had been relieved.
At this point, our family doctor admitted that he had no idea what was happening, and said that the Younger W needed to be seen by a specialist, and he recommended a gastroenterologist. It took a while to get the appointment, and to get to see him. It was early November, and he scheduled a colonoscopy, but that wasn't going to occur until the first week of December. Sure enough, before we could have the colonoscopy done, the Younger W had another severe bout of diarrhea, causing dehydration and another stay in the hospital, this time right before Thanksgiving. This stay, the gastroenterologist began to suspect that the Younger W might be suffering from ulcerative colitis, and put him on prednisone. This treatment stabilized him and got him home the day before Thanksgiving. Ten days later, he had the colonoscopy and the preliminary diagnosis became a little more sure. At that point, it was determined that the Younger W suffered from either ulcerative colitis or from Crohn's Disease.
At this point the family went from the mystery of what was wrong with the Younger W to the mystery of how we could get this problem under control. The first meeting that we had after the colonoscopy with the local gastroenterologist presented us with the first three alternatives for treatment. The Younger W was first kept on the high level of predisone, and a few weeks later, he was instructed to start trying to lower the amount of prednisone. Before long, the level of prednisone was too low to keep the UC under control. The doctor went to treatment #2, another drug along with the prednisone, and we waited for that treatment to work and he again started to back off the prednisone. Once again, the UC couldn't be controlled without the high level of prednisone, and we moved on to treatment #3. When that also failed, the local gastroenterologist admitted defeat, and recommended that the Younger W go to the University of Iowa gastroenterology department. So, in the middle of winter, on and especially foggy February day, the Younger W and I headed for Iowa City and another doctor to be seen.
We had now gone through six months, 2/3 of the school year, and the Younger W had missed a great deal of school, the grades were bad because of all the missed time, and he couldn't do much with friends or take part in many activities, as he needed at all times to be within a minute or two of a bathroom. No trips to the mall with friends, going to movies was possible, but usually interrupted. And all of this was at a time when he was most self-conscious about himself.
The meeting with the doctor at the University of Iowa was a wonderful and remarkable experience. From the beginning, he treated the Younger W as an equal who was the most responsible person for making sure that the Younger W felt his best. He explained the different options that we faced for treating the UC, and explained what order he thought was best for trying the different options. He explained that yes, surgery could cure the UC, but why at his young age he would rather wait than try the surgery. It was at this point that the doctor started to explain about azathioprine and what it could do. He didn't start the drug at that first visit because there are side effects to using the azathioprine.
After discussions at home, we decided to try the azathioprine in hopes that the Younger W would be able to finally be able to get off of the prednisone. Since it takes a while for the azathioprine to reach an effective level in the body, the level of prednisone still remained the same for a few more months. Finally, by the 4th of July before he started high school, we were able to get him completely off of the prednisone. However, at that point, he was taking four of the azathioprine pills every day.
Because of the way his current doctor handles each check-up, the Younger W has taken responsibility for knowing exactly what drugs he takes, how often he takes them, and what the dosage is for each pill. He is the one responsible for remembering to take the pills, and believe me, he knows if he misses taking a dosage. He knows what symptoms are cause for alarm, and will alert his father or me if he starts having any of those symptoms.
After his(our) concerns were expressed on the amount of azathioprine, the doctor has now changed that by adding a prescription for allopurinol, which assists the azathioprine (along with the Lialda) in keeping the UC under control. The combination carries a risk and definitely isn't for everyone, but we feel right now that this is a good choice for the Younger W.
Please note that this combination of drugs does carry a significant risk for side effects. This is a constant concern, but the danger posed by the severity of the Younger W's ulcerative colitis currently outweighs the risk from the drugs that he is taking. I'll discuss this more in next week's installment of Kosability.
For now, the Younger W is a fairly normal 16-year-old. His grades haven't really rebounded totally to get back to where they were before the UC decided to show itself. But at least he isn't missing a lot of school, and he no longer has to pass up activities with friends because of the complications from the UC. We still have to be careful about possible exposures to disease, but he handles that pretty well.
More information: Crohn's disease/ulcerative colitis (IBD): pubmed, Wikipedia, Mayo Clinic, and Crohn's and Colitis Foundation of America (CCFA)