So, I think I’ve had UC since I was about 11 or 12 (I’m 33 now). After many attempts, a doc finally took it seriously and so was diagnosed with either UC or Crohn’s in 2007 – doc didn’t think it was too important which is was which I found odd at the time. He recommended steroids and Asacol which I didn’t take – figured I had gotten along just fine without them until then.
Then last year while in Switzerland on holiday, I had a pretty bad flare which wound me up in hospital. Had another scope – still didn’t know if UC or Crohn’s. Started Prednisone and Asacol – tapered the Pred after 3 months and stayed on Asacol – 4.8mg/day which I eventually tapered off to 3.2mg which is the only thing I’m on at the moment. Was fine for almost a year. Went into my consultant on 8th Dec – took bloods – nothing showed up. Only 2 days later, another flare started… isn’t it odd that nothing showed up in my bloods from 2 days previous??? Anyhow, could only get an appointment for some weeks later so I went in a couple of days ago – they weren’t suprised that nothing showed in my blood tests… and when I pressed them asking which form of IBD I have, they didn’t seem too pushed. Was really blasé about the whole thing… that it “didn’t matter really if it was UC or Crohn’s” – well, it matters to me. They’re sending me in for another colonoscopy on Monday (in 2 da ys) to investigate further, but are talking about putting me back on Pred, adding Asathioprine (Imuran) – really not up for that! I’ve been on the SCD for last 2 weeks – didn’t do the starter diet though as it seemed really challenging…
I guess I’m just really frustrated at the moment… I find it strange that the consultants aren’t too interested in whether it’s UC or Crohn’s… what do you think? Also, only 2 days after a flare started, shouldn’t some kind of inflammatory markers have showed up in my bloods???
I really don’t want to go back on steroids, and really really really don’t want to start Imuran… just don’t really know what to do.
I’m frustrated that doc’s just want to suppress the condition and not figure out why this is happening… it’s just all drugs, drugs and more drugs. I’m not a believer in “drugs for the rest of your life” type advice that I’m getting from my doc.
Any advice would be REALLY appreciated!!
Thanks in advance,
Dee from Ireland
Past – Prednisone – 50mg slowly tapered to 0g over 3 months. Asacol – 4.8mg/day
Present – Asacol – 3.2mg/day
Future – doc looking to put me on steroids to get over flare, and start Imuran (foreverrrr! – bah!)
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com