Ulcerative colitis: Claire's story 

Claire has ulcerative colitis, an inflammatory bowel disease. She talks about how she was diagnosed, the treatment options available and how she manages the condition.

Read more about ulcerative colitis

Transcript of Ulcerative colitis: Claire's story

My name's Claire and I'm 26 years old.

When I was 18 I was diagnosed with ulcerative colitis.

And I tried various treatments over the years,

which resulted in having surgery last January.

That involved removing the whole of my large intestine

and creating an internal patch out of my small intestine.

Ulcerative colitis is an inflammatory bowel disease,

also sometimes described as an autoimmune disease.

It only affects the large intestine,

which is different to Crohn's disease, which is a very closely related disease,

but that can affect any part of the digestive system.

I first started getting symptoms about six weeks after I went to university,

when I was 18.

Every time I ate, I would get stomach pains and I didn't really know why.

I'd still be hungry, but I'd be getting these stomach pains.

Then I started getting diarrhoea,

and I had that for about two weeks...

..and then decided to go to the university doctors

on the advice of my mum from down the phone...

..thinking it was just a virus or something really simple.

They then told me to go and have a blood test.

But in the meantime I got really quite unwell,

and I noticed that there was blood in the diarrhoea.

So I came home.

I was then in hospital for about two weeks.

And basically, they only really looked at ulcerative colitis

when my grandmother phoned up

and said that there was a genetic history,

a past history of bowel trouble,

on that side of the family that we hadn't previously known about.

My consultant referred me to a surgeon in 2004,

a brilliant surgeon,

but I didn't actually decide to have the operation for four years

because it's really important to be mentally prepared to have the surgery,

because it's a very big thing to go through.

The basics of the surgery is that you have your colon,

your large intestine, removed,

and then I had this done in two stages.

I had the colon removed and then they made a pouch, a J-shaped pouch,

from my small intestine.

And they also made a stoma whilst in that first operation,

so the pouch they constructed inside could heal over two to three months

before they sort of reconnect your gut again.

I was actually only in hospital for about ten days

after the first lot of surgery,

because I was with something called the Enhanced Recovery Programme,

which means they get you up and about as soon as possible.

I found the stoma quite difficult.

Not because of body image or anything.

It's just having to look after it.

Although apparently I did really well and I managed in the first few days.

But a lot of people find it difficult to look after

because it's quite complicated to clean it and put the bag on

and it's quite an alien thing to suddenly get used to.

I had the stoma for about two and a half months

and then I went back into hospital literally just for a week

and had the stoma reversed and started using my pouch.

Since having surgery, my quality of life has improved dramatically.

I now work full time, I've got much more energy, much more stamina.

Obviously I'm not so tired.

It's brought spontaneity back into my life.

I can plan ahead to do stuff and presume that I'm going to be well on those days.

There won't be any further treatment.

But probably the biggest thing is that previously,

obviously with ulcerative colitis you suffer from the got-to-go-now feeling

and possibly bowel incontinence and all the pain associated with that,

and the fact that it's really embarrassing and socially unacceptable.

And the biggest thing that surgery has given me is control over my bowels,

so even though I still may empty my bowel about four times a day,

I've got complete control over that

and that means, you know, I've got my life back, basically.


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