I called my local GI to try to get an appointment. I know I have a flare and I know the Humira is not working like it should. His response was well, kind of appalling: "Your Crohns is really more severe than I am comfortable treating so I think you need to find a new doctor"
And until then I am supposed to do what exactly???
I'm sorry you're a GI doctor specializing in CROHNS AND UC. Perhaps…just perhaps you should rethink your medical title here? If you're perfectly happy treating me when I am doing okay and not having bad Crohns issues then you are not a Crohns/UC specialist you're a general GI.
You know… just so we're clear here.
I went most of my life avoiding hospitals and stays like what happened to me this past year. I was lucky. I never really understood the people I heard about who complained of doctors not believing them - not believing their pain…
I do now.
I know if I go back to the local hospital I will be treated like last time. I'll be treated like a drug addict (yeah I haven't had a dilaudid since early May thank you very much and the pill I took last night was just a glorified Tylenol) and like I am faking, over exaggerating or just plain not knowing how to manage my disease. You know what? I've had this disease basically my whole life. I've been LUCKY for most of that time. But… now that shit has been hitting the fan I suddenly don't know how to manage it/can't get a doctor to want to keep treating me?
There's Hopkins however, I am not going to Hopkins again for a few reasons.
- They're not as great as everyone thinks patient quality wise. I am sure they're still awesome with research but not worth driving over an hour for appointments.
- I'm sorry - you released me from my last surgery with a KNOWN staph infection. Yeah… you rock guys.
- While I did really like my surgeon and she basically did a good job - she does not want to even consider other options for a "reversal" of sorts. Her way or no way. My body so I say, no thanks.
- While this is not a major issue - the food there sucks. I mean, inedible. INOVA Loudoun has food that's about a million times better. Shame they don't have a colorectal surgical department.
I've heard some good things about the doctors over at Reston Medical Center. They have a colorectal department and they're not too far from where I currently live. Still not ideal as it's not close enough for me to go to appointments when my oldest is in school. And… I can't always get babysitting and don't want to haul two kids to all my doctor visits. But… they're closer than Baltimore or DC so… gonna check them out I think.
Until then, I hope this flare passes. I am so tried all the time again. That's harder for me to deal with than the pain. The pain well, it's been a constant my whole life so nothing new really but fatigue… that is hard. I have two littles who depend on me, who need me present. Need me to be energetic, need me to play with them.
And when the fatigue is this bad, even coffee doesn't help. And the vicious circle begins because the pain makes it hard to sleep, no sleep equals even worse fatigue.
When will it end?
I heard they're transplanting colons in the UK. Maybe I should look into that. lol