I enjoyed this article below, found in the Birmingham (UK) Post. It addresses several issues, but primarily focuses on the challenge of talking about Crohn's Disease. Crohn's is often an unspoken illness, but I say talk about it...throw it out there and you will be surprised.
Wendy Holt tells Diane Parkes why she is happy to challenge ignorance about an incurable bowel condition. Three weeks before walking down the aisle on her wedding day Wendy Holt was diagnosed with an incurable condition known as Crohn’s disease.
But the diagnosis was actually a relief as she had been suffering its symptoms for 18 months without knowing what the problem was.
Taking medication gave some immediate help which meant that by her wedding day in 1995 she was more than able to smile for the cameras.
Crohn’s disease is one of the unspoken illnesses. Being an intestinal disorder whose symptoms can include diarrhoea and a sudden and urgent need to go to the toilet as well as exhaustion and sickness, it is not an illness people tend to feel comfortable talking about.
Indeed Wendy, who is 40 and works as a part-time school governors’ clerk, had never heard of it when she was told she had it.
“When I started getting the symptoms I thought it was just a series of stomach bugs and it would go away,” she recalls. “And many times it did. But then one day I came home and sat down on the stairs and literally just dropped.
“When Andy, now my husband, came back that night he said I was really poorly and needed to see a doctor.”
Initially the doctor treated the problem as a blockage to the bowel but a blood test led to an endoscopy and colonoscopy at Solihull Hospital where Crohn’s disease was first mentioned.
“The consultant said it could be Crohn’s disease or it might be tuberculosis,” says Wendy, of Solihull. “He gave me some steroids to take and said that if it was Crohn’s it would make it better but if it was TB I would be back in hospital the next day.
“And the steroids made it instantly better, it was great.”
This state of play lasted for two years when the symptoms returned with a vengeance.
“I was very poorly and the steroids weren’t working so I was taken to Solihull Hospital where they were feeding me with a tube but that didn’t work either so they operated.”
In the event, doctors removed part of the colon and Wendy spent a month in hospital recovering. All seemed well until 1999 when she had her first child Eleanor.
“They did warn me beforehand that I could have problems because of the pregnancy,” says Wendy. “When you are pregnant your body naturally creates steroids. If you are taking steroids as medication in a normal condition, you are weaned off them gradually. But when your body has been producing them naturally during pregnancy and you then have the baby they stop suddenly.”
More medication seemed to settle the problem until Wendy had her second child, Nicholas, now aged six. This time steroids were not enough and in December, 2007, Wendy underwent another operation to remove a narrowing of the small bowel.
This caused its own problems because Wendy had lost the part of the intestine which absorbs iron so she became anaemic and very poorly. Taken to Heartlands Hospital, her condition was stabilised again with tablets.
Wendy is the first to admit the entire experience has been a roller-coaster. Her condition is stable and she is under the care of the specialist inflammatory bowel diseases clinic at Heartlands where she can contact a nurse as a self-referral at any time.
Over the years Wendy and her 40-year-old husband Andy, an engineer with Land Rover, have learned to live with Crohn’s disease.
“When I am in remission and it is controlled by the steroids then the worst I get is tiredness,” she says. “But when it flares up it is a real pain as I always need to plan everything and know there are toilets nearby.”
Wendy is happy to talk about her condition in an attempt to battle the lack of knowledge about Crohn’s disease.
“When I was diagnosed I had never heard of it and most of the time when you tell people they don’t know what it is,” she says.
“The problem is that people don’t like to talk about it. It isn’t one of those conditions that everyone knows about.
“The point is that from the outside you cannot see there is anything the matter. Only once, when I was feeling really poorly, did a friend at work tell me I looked grey. Other than that, people don’t realise. When I was diagnosed I found out a lot of information from the National Association for Colitis and Crohn’s disease and became a member and still am. I don’t always read everything as you don’t always want to know but it can give you a lot of information.
“Crohn’s disease is not curable and they can’t say why someone develops it. And it can be difficult when people then don’t know what it is. I don’t want sympathy from people but it helps when people understand.”
Emmerdale actor Jeff Hordley is aiming to get the word out about Crohn’s disease after he was diagnosed with the condition 13 years ago.
This summer Jeff has joined forces with the National Association for Colitis and Crohn’s Disease (NACC) for their campaign – Rising to the Challenge.
Aiming to improve levels of understanding among the general public, Jeff, who plays Cain Dingle in the soap, has fronted the campaign. And he fully understands the implications of the disease. “Having lost my mum to Crohn’s when I was nine, I was devastated when I was diagnosed with Crohn’s and thought that it was a death sentence,” he recalls. “However my doctors were excellent and they explained that I would do well after a major operation to remove parts of the bowel.
“At the time of the operation I was a student actor and probably well-placed to talk openly about my condition. I personally find that people are more supportive and understanding if they know about my condition.”
And it is an uphill task. NACC, which provides support and information for families affected by Crohn’s disease and fellow inflammatory bowel disease colitis, says research shows only 64 per cent of the population are aware of the conditions.
Chief executive Richard Driscoll says: “The major issue is that despite colitis and Crohn’s affecting one in 250 of the population, making them relatively common conditions, many young people with the symptoms of urgent diarrhoea, pain and severe fatigue have their lives made even tougher because two-thirds of the public have no understanding of their symptoms.”