Hi, I have been reading this forum for some time and i was hoping that somebody would be able to give me some advice. I apologise for the length of the post – i just don't know where else to turn.
I have had digestive problems for around 10yrs after numerous tests i was told i had IBS and medicated as such. about 4 yrs ago my symptoms worsened and i had a flexible sigmoidoscopy the doctor on immediately going in said something wasn't right he thought it was Crohn's (my grandmother has Crohn's so i knew a bit about the disease). However the histology came back as far as i remember inconclusive, so was told i had IBS and to eat properly etc.
cut to august 2007 – still suffering with chronic pain, urgency, lots of blood and mucos, eye and skin problems, nausea, cramping and i have another sigmoidoscopy this time at a different hospital. Again the doctor while performing this procedure says what he is seeing is not normal, there looks like scarring from ulcers that have healed and looks like whatever had been going on has been going on for a while. Unfortunately the printer wasn't working so there is no record of this. The histology came back confirming moderately active ulcerative proctitis and i start pentasa enemas. Christmas hits and i still bleeding including lots of dark stuff, mucos and just movements of bloody mucos. The GI decides to put me on Asacol and pred and orders a colonoscopy as he suspects there may be something going on further up (which is my thoughts). I had the colonoscopy 3 weeks ago it showed “mild disease and IC valve looked a little inflamed and not clearly visable they were unable to get into the small bowel”.
Last week i went to clinic and i was still experiencing blood, pain mucos etc, the doctor said that it sounds more like Crohn's than UC and said if i was no better in 7 days i would have to be admitted and have a hydrocotosone IV. Then on Thursday i go back to clinic and see yet another GI (I live in the UK and it seems every time you go to clinic you see a different doctor). He has received my notes from the previous hospital and spent most of his time reading those and not listening to me. He said that i probably just have IBS that nothing really showed up on this last colonoscopy and i should go away and take up to 8 imodium a day. I am still on pred and experiencing some blood still – they have not found any haemorrhoids etc to account for it.
My questions are
Do you have idea what the last colonoscopy report ment?
Does this sound like just IBS?
How do i get i definitive diagnosis?
I am so upset and angry by all this i am fatigued all the time and just want a definitive answer after all this time. Any advice is truly welcome.
Thank you all for listening x