Posted 8/31/2012 5:27 PM (GMT 0)
I am so incredibly frustrated right now with my GI doctor and what he's putting me through. We've been dancing around this diagnosis for a year and i can't take any more tests and medicine changes. I need some advice.
about a year and half ago, I went to the hospital with severe pain in my lower right quadrant thinking I had appendicitis. An ultrasound and CT scan showed some pretty bad swelling in the terminal ileum instead. When I was finally able to see my GI doctor that I was referred to, was held up by other health issues, we decided to do a colonoscopy. At the time when we finally got to the scope, I felt perfectly fine and healthy. So of course the scope "looked good" but the biopsies showed that had ileo-colitis. Ok, so my Dr then put me on a very small does of entocort since I was feeling good, just to try and control the diarrhea and prevent further flareups. The entorcort took a while to work, as I was only on 3mg at the time, so he took that as, "it's not working" and decided to put me on dicetal, an IBS medication. The dicetal made me so ill it was insane. I could barely eat, and was going to the washroom up to 20 times a day with terrible diarrhea. So obviously, Ithat wasn't working and asked to be put back on the entocort.
At the beginning of June, I had a terrible flare-up. Back in the hospital in terrible immobilizing pain where I dropped about 20 pounds in a week and half. We were able to do an emergency colonoscopy at that time with a different GI specialist than my own. It looked terrible, and the biospies showed now that I have aschemic colitis, very strange for a 23 year old girl. I was put on Pentasa, Ciprofloxacin, Metronidazole, and 9mg/day of entorcort. It took about a month for the pain to go away, and the diarrhea and minor pains only dispersed in the couple weeks, and I've been feeling normal and great again with "normal" bathroom trips.
I had another colonscopy just yesterday that my GI doctor ordered back in July to find out why it was taking so long to get better, and to see what the test had to say about the aschemic colitis. My doctor comes to me after the test to say, it all looked good. I asked him if they took biopsies and he said no, we didn't bother, I think we're dealing an IBS sort of thing here.....
I'm sorry, but we've done tests that have said I have 2 different types of crohn's colitis, the crohns medication is helping me, the IBS medication made me very ill...and you think it's IBS????? If it looks, sounds, acts, walks, dances like Crohns, it's bloody Crohns. I'm incredibly frustrated and don't know what to do with this doctor any longer.
To put the icing on the cake, the manufacturer shorted production on entocort and I am having difficulty finding any in my city. When my pharmacy faxed my doctor for a replacement medication, he said some pharmacies in the city have it, you just have to find it... That seems unprofessional. With the help of my pharmacy, we were in contact with literally every pharmacy in my city, and found none. So he's left me high and dry with nothing.
Does anyone have any thoughts on this? I just feel neglected and like I'm being jerked around my Gi doctor, the person who is supposed to be making me feel better. I'm trying right now to get a referral from my family doctor to a new GI specialist. Thank god there's a place like this to come and vent and look for support. Thanks!