A dental hygienist who has lived with Crohn’s disease for more than 20 years has spoken of the reassurance she received from sharing experiences with others while urging anyone else who has recently been diagnosed not to be afraid to talk.
Alison Fisk first experienced symptoms in 1994 when eating would cause either severe pain or sickness. As she was taking her A-levels at the time, her GP initially diagnosed her with irritable bowel syndrome exacerbated by stress, which left Alison questioning herself and wondering what steps she could take to change her lifestyle.
She struggled on for two years until she was diagnosed with Crohn’s disease just before her 21st birthday after she began throwing up bile and was admitted to Colchester Hospital as an emergency.
“My symptoms were quite extreme,” said Alison. “I was in limbo and got very low – I didn’t know what was going on with my body or what I could do differently to make my life easier.
“The way I was diagnosed was difficult. I’ve had Crohn’s for 20 years and lots of operations since, but that was the worst part of it for me – I just wish it could’ve been quicker.
“But getting that diagnosis was still a relief – at least then I knew what I was dealing with and that it wasn’t just in my head or something I was doing wrong.”
During her admission, Alison’s surgeons discovered a section of her bowel was sticking together and performed a bowel resection and abscess drain to relieve her symptoms. Although the operation ran smoothly, Alison’s wound re-opened while she was recuperating, which elongated her recovery and forced her to take several months off work.
In the years following her first surgery, Alison was able to control her Crohn’s with medication, which meant she enjoyed a long period of good health and remission. This continued until 2014 when she started suffering with diarrhoea and underwent a second operation and Infliximab infusions to treat a fistula.
Two years’ later, Alison experienced further difficulties when sections of her bowel began sticking together once more. Her surgeon warned her that she may need a temporary stoma, and she fully expected to wake up with a bag after her surgery.
“The possibility of having a bag has been there ever since I was diagnosed,” said Alison, who is in her 40s. “As I’ve got older, I’ve accepted it – people get on with completely normal lives with a bag, so there is no reason that I shouldn’t be the same.
“Before the operation, I spoke to the stoma nurses who told me what would happen and marked me up. They were excellent – I cannot praise them enough. They assured me that they would be there for me after the surgery and wouldn’t let me leave hospital until I was absolutely confident in managing my stoma. They talked about the equipment I’d need and gave me a bag so I could get used to the feel of it, and said they would always be available on the end of the phone if I needed help or support. I was very appreciative – they removed the worry I was feeling and I cannot stress enough how fantastic they were.
“In the end my surgeon was able to carry out a second resection without giving me a bag. I accept I will probably need one in the future, but thanks to the stoma nurses I’m no longer scared about the prospect.
“The care I had was amazing and I recovered much more quickly the second time thanks to the enhanced recovery programme which the hospital now runs, which wasn’t available when I was 21. The programme aims to make sure you are as healthy as possible before surgery and receive the right support to get you up and moving afterwards. Thanks to the dedication of the staff, I was able to go home the day before my 40th birthday, which was great.
“I’m now doing really well. I do whatever I like, carry on with my usual activities and forget about the condition. I don’t let Crohn’s rule my life and love holidaying in America, especially going to theme parks with my husband. I also teach Burlesque dancing and adore dressing up and partying at Butlins with my friends.
“I go back to the hospital for a yearly review and will give them a shout if I have any problems or flare-ups outside of that time. I feel reassured that if there are any issues I will be listened to and it will be sorted out quickly.
“I would urge others who have recently been diagnosed with IBD to keep talking. Get in touch with the Crohn’s and Colitis UK (CCUK) charity and they will give you lots of information and can put you in touch with other people going through exactly the same thing, if you feel that would help.
“For me, the benefits of talking to someone else were immeasurable – it can feel very alone when you’re first diagnosed as bowels are not a subject many people like to discuss. Talking to someone else makes such a difference and shows you that there is still life after an IBD diagnosis.”