Posted 6/18/2014 7:30 PM (GMT -6)
My primary pain concerns are my pelvic pain from bladder inflammation (cystitis), abdominal pain, frequent infections, and Crohn's arthritis. I have not been recommended at rheumatologist; I imagine because my arthritis is from Crohn's and is not rheumatoid arthritis.
I saw my surgeon again today for the JP drain removal and my PCP on Thursday. I tried seeing a GI last week, and the office made that appointment, but when I showed up with my father they turned us away, saying the GI couldn't see me because I saw someone else in the practice. This is one of many issues with that office's staff, and apparently even my surgeon's office has had the same trouble. The nurse at the surgeon's office tried to set me up another appointment at that office today, and you could tell she was getting frustrated, too. I am so angry at that office. They make me look like I'm noncompliant, which is ridiculous because I see all my other doctors just fine.
I took tramadol for a number of years, 200mg or less a day, prescribed by the same pain management doctor since 2008. It was never enough, but I dealt with it. I really couldn't live a normal life: I couldn't even go to the mall or the zoo without having to take frequent breaks due to lower back pain. But as my pain worsened, I tried to see that doctor more often and he knew of my trips to the hospital. But he didn't care. He didn't prescribe anything else, he was frequently late on refills and even rejected a refill two days ahead of time, right before he went on vacation. The month before that he was eight days late! And then the staff yelled at my fiance for calling them and leaving a message saying he was late and they hadn't returned my call, and we were tired of having to go to the hospital for my pain. The physician's assistant recognized the severity of my condition and we talked for a while, but the doctor himself acted like I was just fine, since my two abscesses were healed. Never mind I had just gotten out of the hospital again for fluid aspiration, a high WBC, and two new ovarian cysts which I had never had before. Since then, I have had another severe abscess.
The surgeon today refused to prescribe any pain medication for me. He just took out the JP drain, which went fine. He's pretty good at that. I like my doctors as people, but they just don't understand the severity of my pain. I can give them numbers, but how will they know how bad it is? I can say "I want to kill myself it's that bad," and I'm afraid they'll put me in a psych ward and declare my pain as mainly in my head. Nevermind my heartrate was 144 in the office today. 144! And no concern. Did they think I just ran a marathon? No temperature check, either. At least do that, and run a blood test.
I have been taking so much pain medication, outside of narcotics, to control this, and it's no use. I take at least 2g of Tylenol daily. I take Pyridium for my cystitis pain, which nobody even recommended to me, I just did research online. But I know I can't take that for more than a few days without asking a doctor, who will probably tell me not to take it anyway knowing them. Then I take ibuprofen, even though it is strongly contraindicated with Crohn's disease. I also take prednisone, which I have reduced to 5mg from the usual 10-15mg, and that I only took because of my pain. My PCP says I must stop it, and I am being difficult and have to follow their instructions, and I understand that, especially with the danger of taking prednisone for more than 3 months or so. But they are giving me absolutely nothing to help!
The PCP also refused to prescribe any pain medication, and instead said I must wait to see a new pain management doctor. Her office then referred me to a god-awful physician with several disciplinary actions against him and a lawsuit by a dead Crohn's patient's family. This is that doctor in his own words on his Youtube channel, in reply to a comment about pain during epidural injections (he said there is no pain): "depends upon who is doing procedure; we do over 2000 per year; we don't have time 'fussing' with patients and make our process pleasant for both patient and doctor." However, I was recommended another pain management doctor and have since been trying to set up a referral with him. He seems good; I only wish I saw him sooner.
Why do the GIs in the hospital never do anything for me? Even when my infections weren't as bad or perhaps not a problem, they could have started me on a medication right then and there! Why didn't they? What am I supposed to do to get help? I'm tired of this!
Current DX: Crohn's disease, syringomyelia, hypothyroidism