sorry, but same questions -
i get the whole chromes/UC conundrum, but your current GI seems to be doing very little - how long have you been using the enemas and how often ?
what exactly are your current symptoms ? said...
I was hospitalised in January for dehydration and blood loss and was discharged in 5 days after being re hydrated and sent away with antibiotics. I was told I would have a colonoscopy within 2 weeks. Well I didn't hear anything and symptoms were worsening so went to my GP who said it I is most likely IBD, to stop the antibiotics and gave me prednisolone enemas. I started the enemas and they helped stop the bleeding quickly. My appointment came through for appointment colonoscopy on 10th March during which my GI found inflammation in the splenic flexure and said the enemas had probably healed the rectum appointment nd sigmoid appointment need prescribed me more enemas.
I then had a followup appointment with my GI in May where he said the biopsies showed chronic inflammation and IBD but could not determine which type. So he said stop the enemas to allow symptoms to worse so he can do another scope whilst I am not on any treatment and hopefully he would be able to determine which type that way. I did flare end of May but he was on holiday so had to go back on the enemas. Symptoms have subsided and at the moment I only have lower abdomen burning type pain. So basically I've got to wait to start bleeding before he will do a scope.
I have used the enemas on and off for 3 months or so but when I stop them the bleeding and urgency usually returns within 2 to 3 weeks. My symptoms when it happens includes tummy cramping and loud gurgling at first which then progresses within 24 to 48 hours to diarrhea, pus, mucus and bleeding and burning type pain in lower abdomen. It's really getting me down because I feel like a sitting duck waiting to get ill again!
Notsosicklygirl I have had a colonoscopy as mentioned above, I haven't had an endoscopy, not sure what an FCP is?I agree with you, I do want an accurate diagnosis but I have been having flare ups since June 2016 and they seem to be happening more frequently now, I. E. When I stop the enemas symptoms return within a few weeks. Even if the bleeding doesn't return even in a month or so, is it right that I am not on medication? Just concerned that I can't see what's going on in my bowel and that my next flare might end up being worse..... But my GI won't do another scope until there is bleeding so it's wait and see at the moment.
I honestly did not think it would be this difficult to get a diagnosis.