Thanks all. Appreciate the empathy and information. This isn't anything to be feared, I know. But it sure is hard seeing your kids go through these things. For myself, I continue to add to my list of inherited crap. My A1C has been borderline for a year, and now my cholesterol is high. Getting old sucks. This is on top of HBP, UC, asthma, allergies, and arthritis. My mom said yesterday I inherited all the bad crap and even came up with some of my own (she was never diagnosed with IBD, but definitely has IBS). Combo genes on the IBD from both parents, I guess.
Had my daughter's appointment yesterday with our PCP. He's so different now than when we first saw him at this clinic. He has a lot more patients now and their practice was bought in between now and then - so I know not everything is the same. But he came in, asked what was going on, felt her belly, and said, "Yep. You probably have UC given your dad's history. Yeah - it's his fault." We know him well enough for him to say that in jest, but he said he would do basic testing for blood in the stool and a CBC but after that - she needed to see a GI. He did not hide his frustration for our Children's Hospital's (CH) GI practice. They are very hard for doctors to schedule and work with due to how much demand they have. But still. I sent him a message this morning just clarifying that the CH wanted inflammation marker tests - and whether he was going to order them or if he was handing things off to the CH. I really tried not directly blaming but let him know I didn't find empathy or partnering with us and the CH in our visit yesterday. And that my wife can provide a direct line of feedback to the CH since she's on the CH GI parent advisory team. He called my wife this morning (her phone # is on my daughter's account) and responded to my email. So we are getting past that.
The CH GI hospital system gave us a first available appt in May. Thankfully my wife has the direct back-channel connection to the IBD coordinators at the CH. We have a telehealth appt on March 10. But sheesh. What about all the other parents of IBD kids? Our system is such a mess right now.
The good news is her Hemoglobin is still in the normal range - 12.4 or so. So no imminent or acute disease at this point. But needs to be diagnosed and addressed.
Thanks again!