Hi, I don't have this awful disease, however my 19 year old daughter has.
It all started last October [2011] when she went off to Uni. She caught 'freshers flu' and started with D, nausea, fatigue, loss of appetite. She passed out twice before she told us how bad she was. She was tested for food poisoning and gastroenteritis - both negative. We got her home and 2 days before Xmas she collapsed at home, we called a paramedic and she was taken to A&E. After waiting for @ 7 hours !! she was just about to be released when they noticed a heart murmur, had this not been noticed she would have been sent home. She was seen by Gastroenterology, due to the symptoms she had originally shown, who said it could be IBD. After 3 colonoscopies,[2 showing ulcerated colon and one normal !!] and steriods, and pred they decided it was UC. As the initial steroids didn't help she was given an anti-inflammatory enema to be administered daily. This didn't help either. She still had bloody stools and constant nausea [for which they now prescribe an anti nausea tablet - neither use nor ornament]. Although her appetite did return. They also now have her seeing an endocronologist as she has had 2 synacthen tests now showing she has adrenal deficiency for which she is on hydrocortisone. But after 3 months on that there seems to be no improvement. She is now awating a capsule test. As the anti-inflamatorys were not working she was prescribed Azathioprine which has made her worse. Her nausea has returned, her loss of appetite and fatigue got worse. After 4 days on that they told her to stop taking them, we are now waiting to see her consultant next week for the next step.
The poor girl has returned to Uni for her 2nd year - luckily she is near so can come home at the drop of a hat.
I don't know what to do for the best for her except be there for her.
She has coped so well as on some days she is really poorly.
A concerned parent xx
It all started last October [2011] when she went off to Uni. She caught 'freshers flu' and started with D, nausea, fatigue, loss of appetite. She passed out twice before she told us how bad she was. She was tested for food poisoning and gastroenteritis - both negative. We got her home and 2 days before Xmas she collapsed at home, we called a paramedic and she was taken to A&E. After waiting for @ 7 hours !! she was just about to be released when they noticed a heart murmur, had this not been noticed she would have been sent home. She was seen by Gastroenterology, due to the symptoms she had originally shown, who said it could be IBD. After 3 colonoscopies,[2 showing ulcerated colon and one normal !!] and steriods, and pred they decided it was UC. As the initial steroids didn't help she was given an anti-inflammatory enema to be administered daily. This didn't help either. She still had bloody stools and constant nausea [for which they now prescribe an anti nausea tablet - neither use nor ornament]. Although her appetite did return. They also now have her seeing an endocronologist as she has had 2 synacthen tests now showing she has adrenal deficiency for which she is on hydrocortisone. But after 3 months on that there seems to be no improvement. She is now awating a capsule test. As the anti-inflamatorys were not working she was prescribed Azathioprine which has made her worse. Her nausea has returned, her loss of appetite and fatigue got worse. After 4 days on that they told her to stop taking them, we are now waiting to see her consultant next week for the next step.
The poor girl has returned to Uni for her 2nd year - luckily she is near so can come home at the drop of a hat.
I don't know what to do for the best for her except be there for her.
She has coped so well as on some days she is really poorly.
A concerned parent xx
Last edited:
