Hi everyone! I'm so thankful that I found this forum! I've been looking for answers and I feel as though I know absolutely ZERO about this disease. No one else in my family has this issue that I know of, and it's been so frustrating.
Our story started recently at the end of June. My little boy, whom I call B, had just turned 4 the previous month and had no other health issues. He's big for his age and very healthy. But at the end of June, that changed. He began to vomit several times a day, he quit eating and drinking, and he stopped having bowel movements. This was a Wednesday and I just thought he had a stomach bug. He never had a fever and he even played and said he felt fine other than the vomiting. By Sunday evening, he had stopped eating and drinking altogether, so I took him to our local emergency room. They said he had a virus (then told my father-in-law he was constipated), gave him an enema (without waiting for it to work) and sent us home. He never went to the bathroom and was worse the next day. We decided to return to the ER, but went to one at a bigger hospital. Again, we were told he was "full of it" so they gave him two more enemas until he got it all out.
I was told he would better the next day and that this wasn't uncommon. I didn't feel it was resolved, but after nearly a week of vomiting, I was hoping they were right. The next day was Tuesday and he was worse. He was just laying and staring most of the day and I decided he was going back to the ER and wasn't leaving the hospital until we got answers. Back we went and they agreed something else was going on, especially when he vomited once and it looked and smelled like stool (sorry to be gross, but it did). The pediatrician said he was most likely dehydrated and fluids should help. It didn't. All day Wednesday he only moved if he had to be sick and he now had diarrhea (the smell was worse than anything I had smelled before). He was like a little wax doll just laying there. It was very scary and we all thought he was going to die. The next morning, Thursday, after a week of steady decline, the pediatrician said she was going to have him transferred to a larger hospital so he could have access to specialists. Within two hours he was being admitted and we knew we were there for a long stay.
A PICC line was started and that helped. By Sunday, they had exhausted all of the non-invasive tests they could do and decided to do colonoscopy and endoscopy (sorry if I misspelled!) to see what was going on. They had suspected inflammation, but they weren't sure how bad it was, where it was, and what was causing it. It was very bad and was found in all parts of his intestines, had caused his bowels to shut down (why he was full), and the opening between his stomach and small intestine to close up (the vomiting). When the doctor came back and said it was Crohn's, we couldn't believe it, but were relieved to have something to work with. Right now he is taking Pentasa 250mg/3x daily, predisolone once a day (slowly reducing), ranitidine 2x daily, and mercaptopurine once daily. We recently finished Canasa suppositories and iron was also recently added. He is more like his old self, but we can see he's in pain at times. He won't say so and he never cried or complained the whole time, leading the doctors to believe that he had a high pain threshold based on the severity of the inflammation. I am having a very difficult time finding information relevant to a preschool-aged little boy. And I don't know what sort of diet for him to be on to help prevent a flare-up. He lost 10 pounds, so the doctors just wanted him to eat. But I feel nutrition is key to helping him stay healthy. I have real fears about what all the meds are doing to his little body also. I'm sorry for a novel-length first post. It was good to get it out! I hope that one of you can recommend some resources to get going in the right direction. I feel totally helpless and clueless, and the worry is really getting to me!
Our story started recently at the end of June. My little boy, whom I call B, had just turned 4 the previous month and had no other health issues. He's big for his age and very healthy. But at the end of June, that changed. He began to vomit several times a day, he quit eating and drinking, and he stopped having bowel movements. This was a Wednesday and I just thought he had a stomach bug. He never had a fever and he even played and said he felt fine other than the vomiting. By Sunday evening, he had stopped eating and drinking altogether, so I took him to our local emergency room. They said he had a virus (then told my father-in-law he was constipated), gave him an enema (without waiting for it to work) and sent us home. He never went to the bathroom and was worse the next day. We decided to return to the ER, but went to one at a bigger hospital. Again, we were told he was "full of it" so they gave him two more enemas until he got it all out.
I was told he would better the next day and that this wasn't uncommon. I didn't feel it was resolved, but after nearly a week of vomiting, I was hoping they were right. The next day was Tuesday and he was worse. He was just laying and staring most of the day and I decided he was going back to the ER and wasn't leaving the hospital until we got answers. Back we went and they agreed something else was going on, especially when he vomited once and it looked and smelled like stool (sorry to be gross, but it did). The pediatrician said he was most likely dehydrated and fluids should help. It didn't. All day Wednesday he only moved if he had to be sick and he now had diarrhea (the smell was worse than anything I had smelled before). He was like a little wax doll just laying there. It was very scary and we all thought he was going to die. The next morning, Thursday, after a week of steady decline, the pediatrician said she was going to have him transferred to a larger hospital so he could have access to specialists. Within two hours he was being admitted and we knew we were there for a long stay.
A PICC line was started and that helped. By Sunday, they had exhausted all of the non-invasive tests they could do and decided to do colonoscopy and endoscopy (sorry if I misspelled!) to see what was going on. They had suspected inflammation, but they weren't sure how bad it was, where it was, and what was causing it. It was very bad and was found in all parts of his intestines, had caused his bowels to shut down (why he was full), and the opening between his stomach and small intestine to close up (the vomiting). When the doctor came back and said it was Crohn's, we couldn't believe it, but were relieved to have something to work with. Right now he is taking Pentasa 250mg/3x daily, predisolone once a day (slowly reducing), ranitidine 2x daily, and mercaptopurine once daily. We recently finished Canasa suppositories and iron was also recently added. He is more like his old self, but we can see he's in pain at times. He won't say so and he never cried or complained the whole time, leading the doctors to believe that he had a high pain threshold based on the severity of the inflammation. I am having a very difficult time finding information relevant to a preschool-aged little boy. And I don't know what sort of diet for him to be on to help prevent a flare-up. He lost 10 pounds, so the doctors just wanted him to eat. But I feel nutrition is key to helping him stay healthy. I have real fears about what all the meds are doing to his little body also. I'm sorry for a novel-length first post. It was good to get it out! I hope that one of you can recommend some resources to get going in the right direction. I feel totally helpless and clueless, and the worry is really getting to me!