"Long wait for diagnosis"
About: John Radcliffe Hospital / Gastroenterology John Radcliffe Hospital Gastroenterology OX3 9DU John Radcliffe Hospital / Gynaecology John Radcliffe Hospital Gynaecology OX3 9DU New Cross Hospital / Gastroenterology New Cross Hospital Gastroenterology WV10 0QP New Cross Hospital / Gynaecology New Cross Hospital Gynaecology WV10 0QP
Posted by elsa (as ),
I suffer from Crohns disease. I have had several surgical procedures due to the disease. My last was in 2009 when I had a permanent ileostomy. I also had a proctectomy.
Some months later my wound had not healed. I complained to the surgeon, who decided to re open the wound and use a vax machine to close it up. This took 4 weeks as an inpatient.
Following this, I continued with a open wound, continued feeling ill and continued complaining to the doctor. I was admitted several times and had several scans to be told each time that the scan didn't show anything that was consistent with my pain. I was by this time dependent on morphine and unable to walk. I was bed ridden most days.
I did some research and found a doctor down in London who had experience of Crohns complications. I emailed him and he advised me to contact St Marks for a referral there. In the meantime I was admitted again. This time my surgeon was away, so a different member of his team sent me for a tummy scan. When I came back to the ward, I asked what was shown. I was advised it had shown some fluid pockets. I was also seen by a gynaecologist who told me I had a small ovarian cyst conclusive with that of a menstrual cycle. (I did advise him that I hadn't had any for some time).
On the return of my own surgeon, he sent me to radiology to have these pockets drained with needles. This was a very invasive procedure which gave me little relief but the strange thing was the radiologist actually said to me 'do you realise how big these pockets were?' He described them as large oranges (several of them). By this time I was not getting any better and had a fraught out patients appointment to see my surgeon. I insisted on a second opinion. He said he would refer me to his friend in Birmingham. He also stated that he had only seen one case like this, so he was unsure on doing surgery. When I asked what had happened to the other person, he said she went and never came back. So he didn't know. He was still pretty sure my pain wasn't conclusive with the scan. After a further admittance for pain, he came to me and said he might send me to Oxford for a second opinion. I agreed.
I went to see the doctor in Oxford, who took one look at my scan and stated he can fix me. I was put on an urgent list and had surgery within weeks. The surgery took seven hours and was a dual surgical procedure with a bowel doctor and a professor of gynaecology. After the surgery, I was advised there were several masses, a chronic infection and I had to have a hysterectomy and a opphorectomy (ovaries removed). The biopsy report showed several masses that needed to be tested for malignancy, All were benign. My fallopian tubes were unrecognisable and the the surgeon stated he was amazed how I had managed with this inside.
If it had been left to New Cross, I dread to think where I would be today.