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Early Stages
He was diagnosed in November of 2000, at the beginning of his seventh grade year. It was very difficult— there were lots of cramps, constipation and irritability. It took us six weeks back and forth to the emergency room trying to figure out what was going on before he was finally diagnosed.
If you’d asked me how I felt about talking about my Crohn’s disease last year I’d probably feel differently, but since then I came out. I have it. I can’t change it; that’s it. When I was a child I was misdiagnosed. I was told that I was crazy when I was younger and my mother took me to the doctor. The doctor excused me from the room and told my mother, “You know, she’s not really sick.” And that was it; I had no testing at all, and was just sent home. So I just figured, okay, this is how everyone feels. I kind of have a weird feeling about that.
It is one of those things that make a mother feel horribly guilty because I didn’t pick up the early signs. She had stomachaches and was tired but I chalked it up to a stressful school year. She was in the fourth grade and it felt like she was just having trouble with school. So it wasn’t until we actually went to the doctor for her annual physical, that he said, “Oh my goodness.” And then I started to put the pieces together. She had lost a lot of weight as a fourth grader. But I didn’t pick these things up until he raised all the red flags and said, “Something’s not right.” He noticed the weight loss. What we noticed at home was a decrease in appetite and complaining more about stomachaches and fatigue and not wanting to go to school. So we thought all of this had to with not wanting to go to school and not that something was wrong with her physically.
When he was in fifth grade he almost seemed to stop eating. If he had been a girl we would have thought he was anorexic or bulimic. Closer to when we were getting him tested he would sometimes eat and then throw-up. That actually happened pretty regularly for a couple months. And the other thing was that he was so tired by the end of the day that he could barely get off the couch. So we would get home at five or something and make dinner, and he would sort of be on the couch maybe watching TV or doing something like that, but he had zero energy. We were always fighting with him to eat. I guess the straw that broke the camel’s back was when he even threw-up pizza.
When we heard the diagnosis, were just devastated. We had never heard of the disease. We knew about steroids and that was horrible. I’ll just never forget the doctor coming out with an x-ray; it was like he was speaking in a different language. We had no clue what this thing was and I’m not someone who goes on the web and reads everything about it. So I guess we were pretty shocked. Our first reaction was, you know, what could we do to have it ourselves so that he didn’t have to? But then, that changes pretty quickly into realizing that you have a kid with a chronic disease. In the beginning we thought it was a race we could run and beat. And I don’t think we realized it was an endless marathon- that there was no quick fix. A chronic disease is a chronic disease and that’s what he has. But it took us a lot to come to terms with that.
One day we were playing ping-pong and I recognized that he couldn’t lift the paddle and he looked terrible. I said, “We have to do something to solve this. If you can’t play ping-pong, how are you going to play little league? How are you going to go to school?” The other thing, beside that one incident, was that we saw that he was becoming house bound on the weekends; he was really afraid to leave the house because he’d have to go to the bathroom. This was fairly embarrassing for him, although he managed to hide it so people didn’t see. But he really struggled playing little league baseball, for instance, or going to school or to a friend’s house. He was doing less and less and less.
For me as a mother, there was a lot of guilt. I thought, “Okay, what am I doing wrong as a mother— why is my child so sick?” It was a relief to realize that it wasn’t me; it’s just the way his body is. And I learned how to cope with it; it helped my husband and me understand ways to do what we needed to do without having that guilt. So we knew when we could tell him he should brush something off without feeling guilty because he’s ill and we’re telling him to brush something off. So it has helped seeing counseling through all this and getting, at a transition, the sense that this is something we can deal with; this is something that is treatable. Yes, he does have it for life, but it could be the case that he never has another attack again. On the other hand, he could have an attack a month from now, but if he does we will know how to handle it. So it is good to have some outside help, and don’t be afraid to ask for it.
The first signs of my son’s IBD were actually a little hard to detect. He had told us that he had some rectal bleeding, but it was minimal, and he had told us that he was experiencing some pain around his rectum. As a result, we sought the advice of our pediatrician, who recommended a colonoscopy. As it turns out, it was only a sigmoidoscopy, so nothing was found. In fact, as that spring continued, things became even more puzzling because our son continued to complain of rectal pain, but we could not determine what the problem was. We ended up in an emergency room triage clinic one day, and ended up making several visits to the pediatrician, but neither could identify the cause of the pain. It was a little bit difficult for our child, because it was hard for his family and physicians to take him seriously when they were not able to identify the cause of the pain. Ultimately, having seen his pediatricians on numerous occasions, we were referred to a surgeon because I was finally able to identify a problem. But before we could see the surgeon, we ended up in the emergency room for surgery for a perirectal abscess. Even then, though, we weren’t under the impression that he had a bowel disease because he had had the so-called colonoscopy a few months prior and nothing was found. Our contact with the surgeon was hampered by our insistence that there was no problem. That began a several-month process to determine the problem. In this case, our son’s first symptoms appeared in March, and this emergency surgery was in June. It wasn’t until the middle of July that he was finally diagnosed with Crohn’s disease. After the emergency surgery for the perirectal abscess, the surgeon told us that it would be a quick recovery and that he could resume all his activities. In fact, he was pretty lethargic and uncomfortable; it was a pretty messy situation for a couple of weeks. He continued to complain of pain, and we returned to the same surgeon who, under the impression that he didn’t have a bowel disease, told us that he simply had scar tissue. In fact, he developed another abscess and early in July had surgery again at a different hospital. This had to be followed up with an upper GI series and again hospitalization for an endoscopy and a complete colonoscopy, at which point he was finally diagnosed with Crohn’s disease.
We were dealing with an eleven year-old who never had medical problems, and this was a pretty messy situation: each surgery required rectal drains, blood work and a lot of IV’s, and this was all prior to diagnosis. He couldn’t swallow the Barium for the upper GI series and was forced to have it put in by a nasogastric tube. Then when he needed his prep for the ultimate endoscopy, he chose to be admitted the night before and have prep through a nasogastric tube again. It was not the most pleasant experience for him. Other experiences that summer were teaching a child who had never taken pills to take pills and having him vomit every possible kind of medication because he wasn’t accustomed to taking a lot of medication. But you get through everything. We used M&M’s to teach him how to take pills. We soon discovered what kind of juice— white grape juice— was easier to swallow them with than other things. Our son had lost tremendous amounts of weight. When he was finally diagnosed, he was put on Prednisone and a number of other medications and slowly started to regain his weight. Ultimately, he’s never missed a day of school because of this illness, and since that summer has never had surgery again, has never been admitted and has been treated for the past three years. However, it took over a year to find a course of treatment that put him into remission.
I think that our initial reaction was anger. We had thought that we had been good advocates for our son for many months, and were angry that nobody in his pediatrician’s office was able to determine what the situation was. We of course were later told that with rectal perianal abscesses, until they’re near rupture, there’s really not a great way to diagnose them, so often this is how you find out. We were nevertheless pretty upset that we had dragged him along, including situations like putting him into a basketball tournament when he was lying on his stomach in the car on the way there, complaining of pain, but not knowing why he was in pain.
I think the diagnosis was a relief— that’s the way I felt, at least. She was not feeling well at school, and she came home for break and just slept 20 of the 24 hours in a day. She was very anemic. We tried antibiotics and she wasn’t getting better. She just couldn’t stay awake. She’d get up and go sit on the couch and the next thing you knew she would be asleep again. I thought, “My gosh— this isn’t normal.” She had all of these different tests that came back and said she was fine, but certain things were not right, like her white count. It was hard not knowing what was going on. And finally our local pediatrician said, “Have you ever heard of Crohn’s disease?” We went on the CCFA website and found out more about it. In a way, it was good that she didn’t have all of the other things that went through my head, like cancer. But when I learned what it truly was, I knew she could start treatments, and we could deal with it.
I think in some ways it was easier to deal with my son’s diagnosis because I have ulcerative colitis. In some ways it was easier and in some ways it was harder. It was easier because I sort of knew about the illnesses, yet on the other hand it was harder because I also knew what the extreme end of the spectrum looks like. |
Back and Forth
Ulcerative Colitis
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated November 12, 2004 |
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