“My health struggles have taught me I should never give up” – Sharon’s story

Sharon Caplan has been living with Crohn’s Disease since she was a child. A decade ago, she was also diagnosed with Chronic Kidney Disease, and now she’s hoping for a transplant. This is her story.

I was just 12 when I was diagnosed with Crohn’s Disease, so it’s not a stretch to say this condition has dominated my whole life. When my mum first took me to the doctor to find out why I was always in pain, he just dismissed it as a nervous tummy. But eventually, after spending countless hours on the loo in agony, I developed an abscess and I was sent to the hospital for tests.

When the news came that I had Crohn’s, I didn’t really know what to feel. It was confusing and there was very little information about the condition. I’ve been living with Crohn’s for more than 40 years now, so I know plenty about it! I’ve spent decades flitting between flares and remission and I’ve had all sorts of treatments including 30 operations.

In many ways, I think having Crohn’s has helped shape me into the strong, determined person I am today. I am really close to my family – and I have two amazing daughters who make me proud every day.


Living with Crohn's Disease


Unfortunately, Crohn’s hasn’t been the only health issue I’ve had to contend with, though. I also have Inflammatory Arthritis, and now I’m living with Chronic Kidney Disease.

I first noticed that something wasn’t right with my kidneys about 10 years ago. I kept getting bouts of kidney stones and having surgery to remove them. Not only that, I became very breathless and had really bad urinary infections.

My doctors referred me to a nephrologist who did some tests and diagnosed Stage Three Chronic Kidney Disease (CKD). The specialist hoped things wouldn’t get worse and that we could manage the symptoms with medication. 

I’ll be honest and say that when I first found out, I was in denial. I’d been dealing with severe Crohn’s since I was 12 and, at the age of 42 as I was then, I just did not want another illness to beat me down the way Crohn’s had.

A decade later and I can’t be in denial any longer. My CKD symptoms are ten times worse than they were and I’m in agony. The disease has progressed to Stage Five which is as serious as it gets. I saw my specialist a couple of weeks ago and he said I desperately need a kidney transplant. We are looking for a live donor – which would mean someone alive and healthy giving me one of their kidneys.

At my last appointment a few weeks ago, my consultant urged me to spread the word and see if any members of the public might put themselves forward. My story was featured in the Jewish Chronicle as well as a local magazine and it has really helped raise awareness.

I’ve always been very open about sharing my journey with Crohn’s because I don’t think people speak enough about hidden conditions like Inflammatory Bowel Disease. That’s also true of CKD – it’s a lot to contend with and people don’t really talk about it.

My health struggles have taught me never to give up. I wake up every day and do my best for everyone around me because life is for living. The real hope now is that I will find a match. I have been so touched by the kindness of strangers.

What does the research say: is there a link between Crohn’s and Colitis and Chronic Kidney Disease?

Evidence suggests that there may be an association between Chronic Kidney Disease and Crohn’s and Colitis. Several recent studies have found a link between the conditions, with people who have Crohn’s or Colitis more likely to develop Chronic Kidney Disease than those who do not have these conditions. However, studies do not all agree and the link between CKD and Crohn’s and Colitis is not yet thoroughly understood.

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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

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