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I’m seeking advice from anyone who has had inpatient IV steroid treatment for UC at a UK hospital.
I am in a very bad flare and oral meds are not working. I am currently faecally incontinent and have barely left the house in weeks because bloody diarhhea is running out of me almost all the time. The only control I have is not to eat or drink for several hours before I need to be anywhere. I find that if I pad up, it can give me a 30 minute window where I can get shopping etc.
I saw a new consultant on Wednesday. He said I needed to be admitted immediately to have IV steroids. He frightened me by saying that my bowel could perforate unless I get immediate treatment.
He sent me to A&E but they would not hand me over to the IBD team who were (according to the consultant) waiting to treat me as I am very dehydrated and they could not find veins to take bloods or insert a cannula. I was passed from a succession of A&E nurses and on to a doctor none of whom could carry out these procedures. We reached an impasse where although they couldn’t do the procedures, they would not hand me over to the IBD team until they had performed them.
After four hours in A&E getting nowhere, I signed myself out and went back to the gastro clinic to see if they could arrange the admission. The consultant was now busy in an endoscopy clinic. They did call him but all he would say is that I had to go back to A&E despite my explaining why I could not get past them to be admitted. A nurse explained to me that though the consultant wants me to have urgent treatment there are probably no beds and that is contributing to me being given the runaround.
I went home and next morning called the gastro team secretary. She said she would have the consultant call me but so far he has not. She has now gone on leave and the IBD nurse is away for three weeks and their helpline closed. It is proving impossible to speak to anyone in the gastro team.
I feel I am being badly let down by the hospital and am racking my brain to think of a practical solution to this. I know the NHS is underfunded and underresourced and I am frightened that my care is falling through the cracks as a result. I have been without care for my IBD for six months since my old consultant retired and his patients not picked up by anyone else. I have spoken to patient liaision at the hospital to see what I should do and have been advised to go back to my GP. I’m pretty sure that’s a fobbing off but wait to see what, if anything, she can do to help me get some care.
So my question is how does IV steroid treatment work? The consultant said I would need to be in hospital for a week. If lack of beds is the issue could I have it done as a day patient? I live only five minutes from the hospital and could easily get there on a daily basis. How are the drugs administered? Dripped 24/7 or in controlled periods over the course of the day? How do they make one feel? Does one have to be regularly monitored? Is it really necessary to be IN hospital to have this treatment?
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