Liz and Joanne

Liz's daughter Joanne was diagnosed with Crohn's 12 years ago - just before her 10th birthday.

She was given a course of steroids and put on enteral feeding for six weeks followed by the reintroduction of foods, none of which appeared to be a trigger.

"Since then I think Joanne has had every drug on the market," says Liz. "6-MP, Mesalazine, Azthioprine, Infliximab, Humira, Vedolizamab, Methotrexate (twice) and Ustekinemab plus numerous courses of steroids.

Every time a drug failed and another was suggested it was hard on all the family - especially as we had to fight for funding for some. And while we tried to stay positive and optimistic there was always that nagging thought - what if it doesn't work? Watching them all fail was heartbreaking and sometimes there wasn't another option.

Over the years, Joanne has had many hospital admissions and numerous tests including endoscopies, colonoscopies, MRI scans, CAT scans, barium swallows and many blood tests, calprotectin tests and X-rays.

Liz says that Joanne's transition to adult care at Exeter hospital wasn't easy for either of them but they love the team at Exeter. Last year Joanne had a panproctocolectomy and formation of an ileostomy which meant the removal of everything below the terminal ileum.

The three months after Joanne's operation were the hardest of our lives with lots of setbacks and disappointments.

While the operation was a success and Joanne initially recovered well she developed complications and had to stay in hospital for two weeks. There then followed a rollercoaster ride of home, in hospital, home, in hospital, with various investigations including an MRI and a scope.

"The scope showed that the Crohn's was misbehaving," says Liz. "A course of steroids was started along with Ustekinamab. Then in February this year, it was decided that a second, smaller operation was needed to refashion Joanne's stoma. This made all the difference and Joanne has started to eat again and is putting some weight back on. It's been a long and rocky road and we're still traveling along it."

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Despite everything that Joanne and the whole Graham family have been through, Liz says they have had many good times over the last few years and proud parent moments. Joanne gained great GCSE results, passed her driving test first time, has performed at music festivals and sung solo and in a choir. She's been a bridesmaid for both her brother and sister, spoken at a CICRA family information day - and promoted one in Exeter on the local radio station.

But Liz has found it frustrating that the general public seems to know so little about IBD. She says:

"People who may have read an article somewhere are full of helpful advice. If I had cut out everything that was suggested, Joanne would have starved to death long ago! It's hard to get people to understand that not all IBD sufferers are affected by food and we have never found a food trigger. These same people also have lots of 'good' ideas to cure it. If only it was that easy."

Joanne is now doing well and coping with her new normal. She is learning to live with her stoma and is looking forward to her future. She has applied to go to college in September to do an access course with a view to going to university.

"We've had great support from CICRA over the years," says Liz. "And I remember Joanne speaking at a CICRA event in Bristol a few years ago and how proud I was of her.

As parents, the only thing we can do is make the best choices we can, sometimes those choices are ones we would rather not have to make, but we make them anyway.

We have to choose to give our children harsh drugs with potentially horrid side effects, but we can't watch them suffer either. We have to nag and bully them to take these medications or stick needles in them. We worry about how much they are missing out on, how sad they can be, how much pain they have. We feel guilty that we might have caused this, that we have chosen the wrong treatment etc.

But we love them and we do the best we can. We would take it away if we could, but we can't. So we try to stay as positive as we can. As long as they always know we love them - our best IS good enough."

Liz has a quote that she uses when Joanne is worried or upset: 

It will be alright in the end, and if it's not alright it's not the end.

"I firmly believe this," says Liz. "I would say to any parent of a child or young person with IBD - enjoy the good times, celebrate any achievements and most of all be kind to yourselves. Take it one day at a time and remember you are doing a great job."

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