Somehow, I think my daughter being diagnosed at 10 with Crohns has helped spur my younger brother back into getting himself well again. YAY!
He has been off all medications for both his Crohns & Ankylosing Spondylitis for over a year now, and unlike many Crohns patients, his AS is very severe, with lesions on his shoulder & collar bones, fusion of his SI joints since his teen years, and calcification of his spine & ribs set in already (he's only 25).
He's decided to accept that he's too sick to work right now and finally realizes that does NOT mean he's a mooch if he applies for disability. YAY AGAIN!
He's been accepted back into a program for low-income, no-insurance patients at a private hospital in Pittsburgh, and is starting at square one getting a new PCP, new referral for GI, for Rheumy, and just starting over. Triple YAY! (his rheumy before he hated & she was a bully, his GI he liked but it's questionable whether they'll accept the quasi-insurance program he's in, and he wants a new PCP who is on board with working as a team with all docs involved.)
Anyway, he saw the new PCP today & asked about pain management. They prescribed him a NSAID. Idiots. This is a constant roadblock he's had. As soon as he brings up pain, they treat him like a toothless, scratching meth-head and shut down. My brother hates pain meds. He self-medicates with marijuana only when things get to the point that he can't function, and that's because he's never found a doctor willing to even listen to the word "pain."
I suggested that he ask for a Pain Management Team referral, rather than asking any doc directly for prescriptions. Since they all seem to believe immediately that he only wants narcotics (and he doesn't, but I don't think he even knows about the neurontin & other such treatments & he'll be delighted to hear of them) they won't even listen or take him seriously. Is this the way to go? Is a Pain Management Team something you just ask for?
I know that once he is back on treatments (Remicade was a miracle for him in the past) he will start to feel better, very quickly... but he is in pain, now, to the point that he can't always even function to get to these vital doctors and state assistance appointments.
I am just SO excited that he's tackling the problem again. He's 5'10 and barely 110lbs... and he's only 5'10 when he's able to stand up straight, which isn't often because his ribs/spine/shoulders are so painful and don't always flex. SO EXCITED TO SEE HIM GET WELL AGAIN!! Please, any advice & assistance you have is welcome.
I'm guiding him from 4hrs away. Severe depression is also a major part of the problem. His last hospitalization was in the psych ward - they treated his gi issue while they were at it, but it was the hopelessness & inability to stop crying that got himi admitted :-(
He has been off all medications for both his Crohns & Ankylosing Spondylitis for over a year now, and unlike many Crohns patients, his AS is very severe, with lesions on his shoulder & collar bones, fusion of his SI joints since his teen years, and calcification of his spine & ribs set in already (he's only 25).
He's decided to accept that he's too sick to work right now and finally realizes that does NOT mean he's a mooch if he applies for disability. YAY AGAIN!
He's been accepted back into a program for low-income, no-insurance patients at a private hospital in Pittsburgh, and is starting at square one getting a new PCP, new referral for GI, for Rheumy, and just starting over. Triple YAY! (his rheumy before he hated & she was a bully, his GI he liked but it's questionable whether they'll accept the quasi-insurance program he's in, and he wants a new PCP who is on board with working as a team with all docs involved.)
Anyway, he saw the new PCP today & asked about pain management. They prescribed him a NSAID. Idiots. This is a constant roadblock he's had. As soon as he brings up pain, they treat him like a toothless, scratching meth-head and shut down. My brother hates pain meds. He self-medicates with marijuana only when things get to the point that he can't function, and that's because he's never found a doctor willing to even listen to the word "pain."
I suggested that he ask for a Pain Management Team referral, rather than asking any doc directly for prescriptions. Since they all seem to believe immediately that he only wants narcotics (and he doesn't, but I don't think he even knows about the neurontin & other such treatments & he'll be delighted to hear of them) they won't even listen or take him seriously. Is this the way to go? Is a Pain Management Team something you just ask for?
I know that once he is back on treatments (Remicade was a miracle for him in the past) he will start to feel better, very quickly... but he is in pain, now, to the point that he can't always even function to get to these vital doctors and state assistance appointments.
I am just SO excited that he's tackling the problem again. He's 5'10 and barely 110lbs... and he's only 5'10 when he's able to stand up straight, which isn't often because his ribs/spine/shoulders are so painful and don't always flex. SO EXCITED TO SEE HIM GET WELL AGAIN!! Please, any advice & assistance you have is welcome.
I'm guiding him from 4hrs away. Severe depression is also a major part of the problem. His last hospitalization was in the psych ward - they treated his gi issue while they were at it, but it was the hopelessness & inability to stop crying that got himi admitted :-(
