I'm so confused by this disease right now, I'm not sure I can even cobble together a coherent story, but here goes...
My son is a teenager now. He first became ill when he was 10 years old, and after running all the gamut of tests, he was diagnosed Indeterminate colitis, strongly leaning UC. He was put on Asacol and it (and other brands of the same medication: Apriso, Delzicol) has kept him in remission for several years. Our first pediatric GI physician left the area about a year after diagnosis and we switched to the one we have now.
About 18 months ago, he started complaining of heartburn. His current GI put him on omeprazole. After a year of that she changed him to famotidine because omeprazole is bad for bone density or something like that.
A couple weeks ago, he started having gut problems, a little diarrhea, a little blood. And more heartburn. He had been on a very low dose of Delzicol for a long time, so that got cranked way up. Then he complained of rectal pain/swelling. We go to ER, they do CT scan, declare it a rectal abscess and treat with antibiotics. Follow up with his GI the next week, she declares it also a rectal abscess (without examining him) and further, announces he for sure has Crohn's, on the basis of the ER visit/CT scan/presence of rectal abscess.
So today, was the first time he's had endoscopy since he was a little boy. Current pediatric GI (5 days later) now says there is no rectal abscess, it's a hemorrhoid. Therefore she walks back her previously adamant assertion that he absolutely has Crohn's, and calls it IBD again. But really stunning to me, was his upper scope... his stomach has a couple bleeding ulcers. He says his stomach never has hurt but it sure looks like it would be painful.
The past two weeks have been difficult because we really never needed much from this current pediatric GI physician because he was so stable. Now that he's not, I'm realizing how awful she is. She's so abrupt and rushes out the door without explaining anything. I'm an RN, btw. I can't stand this woman now. She told us five days ago that he had Crohn's without a doubt, dropped that bomb and walked out of the room leaving us dazed. Then today she says, he has IBD, not sure about Crohn's. The she says, "I will wait for the biopsies and then I will decide what I'm going to give him" , meaning what medication he will get next.
Um, aside from the fact that she's been kind of carelessly putting us on an emotional roller coaster, shouldn't we the parents, and our son, be included in the decision of what his treatment plan will be? I mean I know she's the expert, but he's 18. And, well, I would think this should be a collaborative effort.
He needs to switch over to an adult GI physician soon anyway, so it may happen sooner rather than later. It's not optimal to switch during a flare, but I have already made an appointment with an adult GI physician for him, since it takes a couple months to get in. I'm so unhappy with our current pediatric GI.
So I've come here to learn and to hopefully find other people who can relate to what we're experiencing in our family's situation. I'm open to advice and information. I like to collaborate, share, and learn from others' experiences.
Thank you!
My son is a teenager now. He first became ill when he was 10 years old, and after running all the gamut of tests, he was diagnosed Indeterminate colitis, strongly leaning UC. He was put on Asacol and it (and other brands of the same medication: Apriso, Delzicol) has kept him in remission for several years. Our first pediatric GI physician left the area about a year after diagnosis and we switched to the one we have now.
About 18 months ago, he started complaining of heartburn. His current GI put him on omeprazole. After a year of that she changed him to famotidine because omeprazole is bad for bone density or something like that.
A couple weeks ago, he started having gut problems, a little diarrhea, a little blood. And more heartburn. He had been on a very low dose of Delzicol for a long time, so that got cranked way up. Then he complained of rectal pain/swelling. We go to ER, they do CT scan, declare it a rectal abscess and treat with antibiotics. Follow up with his GI the next week, she declares it also a rectal abscess (without examining him) and further, announces he for sure has Crohn's, on the basis of the ER visit/CT scan/presence of rectal abscess.
So today, was the first time he's had endoscopy since he was a little boy. Current pediatric GI (5 days later) now says there is no rectal abscess, it's a hemorrhoid. Therefore she walks back her previously adamant assertion that he absolutely has Crohn's, and calls it IBD again. But really stunning to me, was his upper scope... his stomach has a couple bleeding ulcers. He says his stomach never has hurt but it sure looks like it would be painful.
The past two weeks have been difficult because we really never needed much from this current pediatric GI physician because he was so stable. Now that he's not, I'm realizing how awful she is. She's so abrupt and rushes out the door without explaining anything. I'm an RN, btw. I can't stand this woman now. She told us five days ago that he had Crohn's without a doubt, dropped that bomb and walked out of the room leaving us dazed. Then today she says, he has IBD, not sure about Crohn's. The she says, "I will wait for the biopsies and then I will decide what I'm going to give him" , meaning what medication he will get next.
Um, aside from the fact that she's been kind of carelessly putting us on an emotional roller coaster, shouldn't we the parents, and our son, be included in the decision of what his treatment plan will be? I mean I know she's the expert, but he's 18. And, well, I would think this should be a collaborative effort.
He needs to switch over to an adult GI physician soon anyway, so it may happen sooner rather than later. It's not optimal to switch during a flare, but I have already made an appointment with an adult GI physician for him, since it takes a couple months to get in. I'm so unhappy with our current pediatric GI.
So I've come here to learn and to hopefully find other people who can relate to what we're experiencing in our family's situation. I'm open to advice and information. I like to collaborate, share, and learn from others' experiences.
Thank you!
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. I feel we now have a very good relationship and that my input/questions are respected. It is an adjustment for parents but, if handled well, also forces our kids to become more involved in their own treatments/decisions. 