Chronic Health Conditions Discussion and Support

Two teams of surgeons visited my daughter - general and colorectal - for all three hospitalizations. The tasks rotate - so they have a team assigned to visit all folks potentially needing surgery (whether they have any personal connection to them or not). All the surgeons in the hospital take a turn on the rounding team, so they only have to go around and interact with patients once every few weeks (which - in theory - solves the "too busy to come to patients' rooms" issue.)

I guess I should update this.

She was ultimately transferred to the hospital where all of her specialists practice - and her specialists were finally able to convince the generalist, the IBD specialist, and the two surgical teams that when my daughter has an inflamed colon she does not experience pain. Not ever in 30 ears. And that if my daughter says she is in pain, she is really in pain and they need to take it seriously. It was still a struggle, and her doctors - even in the hospital they practice in - had to be careful to avoid stepping on the toes of the specialists teams. Her pain came back, big time, along with signs of a raging infection. Massive doses of IV antibiotics worked to calm down her appendix.

And then, less than two weeks later, she had an actual flare - in my opinion - triggered by the IV NSAIDS they gave her. Worse symptoms than she has had since she was 4 - but still no pain. (Research based on giving people with IBD the specific IV NSAIDS they gave her established that somewhere around 20% experienced a flare in 9 days.)

And we went through the same nonsense again. They couldn't get her food allergies straight - and kept sending things that actually cause flares. She was very clear with them that she would be unwilling to take new meds without a prior consultation with her doctors. And, specifically, she wanted to avoid steroids if at all possible. They repeatedly ordered steroids for her - without consultation. And then got pissy with her when she refused them. And, ultimately, the message they took away was, "no steroids," rather than "no new meds without prior consultation."

So when they finally arrived on a non-steroid based treatment, they sent her two new meds to accompany the treatment without warning her about them. After she refused them (risking a 24-hour delay in the treatment she had agreed to), we did some quick research and learned that there was absolutely no evidence to require the secondary drugs - and the secondary drugs were correlated with the very thing they were being used to prevent. The nurse got all pissy and told us to stop googling things, and that the esteemed hospital had its own studies that said they worked, she might die if she refused them, etc. When the GI doctor finally showed up for a consult, it turned out that she agreed with the research we found (no basis for using the secondary meds), and that the pharmacy had added them to the order. It had contacted her - and she decided they were innocuous enough she didn't want to fight the pharmacy protocol - because the message she heard was "no steroids," not "consult before new meds."

Ultimately, the non-steroid treatment worked - but after she was released from the hospital, she developed thrombophlebitis and cellulitis around hte IV site. Had to go on antibiotics - which cause symptoms identical to a flare.

We think we're done with it and she's mostly recovered - but it shouldn't require a a mother to spend more than two weeks sleeping in a recliner in the hospital next to her 33 year old child to help her child fight off doctors who should never be in a position of managing care for a complex chronic condition.

I'm sorry you're going through it too.