DURING the five months it took to diagnose postman Byron Weaver's bowel disease, he lost a third of his body weight, was severely anaemic, and faced the prospect of surgery to remove his large intestine.
A trial drug instead saved the then 25-year-old from having to wear a colostomy bag for the rest of his life, and helped him back onto his round and playing rugby once more.
Mr Weaver, 30, from Cwmbran, is among around 240,000 UK-wide to suffer with an IBD - inflammatory bowel disease, in his case ulcerative colitis.
He is backing the Step Up And Be Counted campaign launched by the National Association for Colitis and Crohn's Disease (NACC), which seeks to set up a national IBD patients' register.
Currently, only four-in-10 UK hospitals hold a database of such patients. The aim would be to ensure quality care for all patients, gather data for research into a cure, and identify patients not in a follow-up system and therefore at risk of complications.
Ulcerative colitis involves inflammation of the large intestine and can cause bleeding, diarrhoea, anaemia, constant pain and discomfort, tiredness, sickness and weight loss.
In Mr Weaver's case, he lost around five stones, and became anaemic, exhausted and malnourished.
"I was bleeding when I went to the toilet, which could be 50 times a day, and it got worse and worse. The first doctor I saw thought it was haemorrhoids, and others couldn't figure it out," said Mr Weaver.
"I was on steroids and medication, but I'd got so bad I had to go into hospital.
"They wanted to take out the large intestine, so I would have to wear a colostomy bag.
That was the last thing I wanted, being sporty and being a postman. I was only six months into my job when I got diagnosed."
As normal prescription drugs were not effective by this stage, Mr Weaver was put on a trial drug, infliximab, as a last resort.
After a year his body began to react badly to it, but by then he had recovered sufficiently for the usual drugs to be effective.
"The support of my parents (Gerry and Dez) has been very important and the thought of playing rugby again kept me going," said Mr Weaver, who plays for Girling RFC.
MR WEAVER relies on a daily drug regime and careful diet, and his postman's round has been adapted to include a route past his parent's home.
"I like to keep things as normal as possible. I play rugby although I don't always train twice a week, because I still get very tired. But I want to control the disease, not have it control me," said Mr Weaver.
"There are a lot more drugs available now, even than when I was diagnosed.
"The doctors were thinking about surgery straightaway, perhaps as a cheaper option, but I would say to people, get a second opinion, and explore all the possibilities."
* For further details, visit www.stepupandbecounted.org.uk or www.nacc.org.uk
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