Posted 1/8/2017 7:49 PM (GMT -5)
Hey all, on Friday I was so bad from this awful flare that I called my doctor two days in a row! Never , ever, do I call him in over two years of seeing him! I've never talked to him, only the nurse, second day I tell her I'm seeing medication in my stool should I try pentasa, she said hold on let me ask the doctor,(btw Uceris made me so much worse) she comes back on and says go get evaluated by the emergency room, per my GI doctor. I said I was "bad" from my fissure , but didn't mention er. He cowardly ducks a real conversation. I was pissed. I call university of Michigan to get into a clinical trial, I'm on the phone for a hour with the sweetest lady, who summed it up by saying try Stelara, because they are running a trial with basically the same drug called the "Lux" study using a leaukin 23 only not the 23 &12 that stelera has. You have to commit to a whole year in the study and I love 3 hours away from u of m , and I have to go every week, it's just impossible when I work . I got more out of this lady than my doc. So I called him back, on his cell phone , which I had when he called about my test results last week and I saved his number to my phone and told him about my u of M call and he was surprised and said, studdering.... I was going to mention Stelara, I will get right on that for you. That's horse crap, he wasn't thinking of me at all. He likes easy cases and my disease is complex. Why do doctors blow us off? I didn't call him out on it, but I felt like it!! I'm on 40mg of pred, cipro, flagyl and asacolhd to get things down and healed. I go in on Tuesday to my colon rectal doc to get my butt looked at and they saved me an appointment in afternoon for surgery if I need it. I'm praying all this medication will help me by then and they don't have to work on my fistula or fissure smile I have had the surgery before and it hurts so bad!!! Everything single GI thatni have had (3) as soon as I start to call and say things are not better , they give up and don't care. Honest it's nuts and they get paid over and over. I guess if I really want someone to handle my case it would be the center for disease in Australia. My GI also said I'm probably to strong to admit I have a bigger GI problem than I admit. He said almost to a fault. Well I'm not a complainer and I think I have a high threshold for pain, I have never taken anything more than Tylenol for pain , but this week I want morphin, that's the pain I was having!! He blew me off plain and simple. I can't ditch him now if he is working on Stelara for me. But look what all I had to do to bring it to his attention. Why couldn't of he have been proactive and suggested it to me, like he cared and was concerned.MF that's what I thought !!
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Took rafaximin for SIBO, worked awesome! Taking asacol HD.
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