My 5 year old was diagnosed with what they think is Ulcerative Colitis last year. She had been ill since Nov 2006, lots of toilet visits a day with bloody stools. We had her at our GP every week as she was losing weight and was physically deterioting in front of our eyes. We still got nowhere except sent home with medication to harden her stools. We were also told that she probably had a tummy bug which may last 4 weeks.
We took her private in Jan 07 and food intolerances were ruled out (other than her nut allergy) - dairy, wheat etc. Gradually she got worse.
On the day of her 4th Birthday she became violently ill and we rushed her to A&E. The doctors were stunned at how bad a condition she was in. She was severely dehydrated and in a bad way. Tests were done and they confirmed she had picked up rotavirus.
However, the consultant told us that he also suspected something more sinister in the background. This was after we explained the history to him.
After a blood transfusion and lots of medication (she was in hospital for 4 weeks) a barium then an endoscope was carried out and biopsies taken from her. They confirmed that they suspected UC but could not be sure as she was really badly inflamed and had to stop the procedure.
She was released on hospital and put on pred, they also put her on Aizaphripone which made her sick and when we done our own research we took her off it.
We have had her on herbal medicine from a herbalist we seen privately and also homeopathic medicine
They done another Endoscope in Aug 07 which was a shambles as the prep medicine never worked - although we told the nurse 5 times in the morning that she had not been to the toilet
Since Sept 07 she was been in good health until May 08 (only on Sulfasalazine) when the symptoms returned. She has been on the highest dose of pred (30mg) for 25 days and there has been no change. She got her bloods done yesterday which have shown all the indicators are high.
They have said that in their opinion and for her quality of life she now has to go on 6MP (mercapturine)
They also want to do another Endoscope in 3 weeks.
My wife and I are worried sick about 6mp and the risks and I just wondered if anyone has any similar experiences or advice?