Confessional Interview: Gabi Cox, living with Crohn's disease

Six years ago Gabi was diagnosed with the inflammatory bowel condition Crohn’s disease, since then she’s been on an emotional journey learning to live with the symptoms, medication and the surgery carried out to fit an ileostomy bag.

I was sixteen and it was around June time and I thought it was just a nervous stomach so I didn't go to the doctor or anything, I thought it was just a bug. Then when I went to the doctor they told me ‘oh no it’s nothing, there’s nothing wrong with you’ so they sent me away.

I was having all sorts of symptoms, the main ones being stomach cramps, a loss of appetite and a funny tummy that kept getting worse and worse. My doctor did a blood test to rule out any food intolerances like wheat or dairy so I had the test and the results showed that there was something wrong, my inflammatory markers were up which meant there was inflammation in my body somewhere.

I was then booked in for a colonoscopy which is where they put a tube into your body with a camera so they can have a look and see what’s going on so they put me to sleep. I was knocked out and I was so ill I really didn't care; I was just lying there feeling horrendous.  I was asleep so it was fine but apparently they said straight away, it took them less than thirty seconds to diagnose me with Crohn's disease.

Attributed to Gabi Cox

At first I felt relieved to finally have a diagnosis but when I was put on various medications and steroids the stress of that and being on the steroids made all my hair fall out at the front. I've been on steroids four times and now I refuse to go on them because I hate them, the first time I put on two stone in weight and my face swelled up and I felt an absolute mess.

My first year at university I wasn't ill at all and then in my second year, which was last year was when I was really, really ill and ended up in hospital. It was the start of the year when everything started going downhill, I got arthritis in my knee and my wrist which can happen if you have inflammation in the stomach as other parts of you can get inflamed but it was mainly my joints which completely seized up and I couldn't walk so I had to use a wheelchair. 

Attributed to Gabi Cox

The first day my doctor got back my mum wheeled me in to the surgery; my doctor took one look at me and was like ‘you've got to come into hospital immediately’.

I had infected arthritis which meant there was an infection in my knee which is why I felt so ill, I had an extremely high temperature and I was so weak as my body was trying to deal with all of this as well as the normal Crohn's symptoms. It was really scary because my doctor said to me if I had waited another day I might have gone into sceptic shock which meant going in to intensive care. Afterwards I had to have physio to get the strength back in my knee as it was so weak from the infection.

It all got ten times worse than that in April last year; I was doing work either from home or from the hospital depending on where I was. I had to inject myself and take tablets every day just to try and control the Crohn's but then my symptoms started flaring up again. The doctors told me that none of the medication was working, but the problem was that they had actually run out of medication to give me.

So on June 6^th, last year, at Oxford hospital I had an ileostomy bag fitted, I went in on the Monday to discuss with the consultant what was going to happen and the consultant was like ‘yep you've got to have the ileostomy, this is a really severe case’.

I was told two months before I had the ileostomy surgery that this was the only option I had left; it’s weird because my first reaction was that I laughed! Whether it was out of shock or disbelief I don’t know but my doctor was really worried because it wasn't a normal reaction so they had to refer me to IBD (irritable bowel disease) counselling to discuss the fact that I clearly wasn't dealing with the situation.

I had the surgery on the Thursday morning, it was surreal because I found out I was having the surgery on one Monday and then a week later id been in, had the surgery and was going home the following Monday, it was literally the quickest thing. I don’t think I really got my head round it, I remember I think I cried for the first time about having it on Tuesday night at around two in the morning and I woke up and was like ‘oh my god, this is really major stuff.’ I remember I kept looking at my stomach and I even took photos of it because I knew it would never look the same again.

When I woke up I refused to look for at least twenty four hours because I was so scared, I never thought I would be because I've seen photos and I'm not squeamish at all so I wasn't that bothered, I was more fascinated! Obviously I saw it for the first time when the nurses had to check everything was functioning and it really wasn't as bad as I thought it was going to be.

It was weird when I woke up because the bag had already been named which took my mind off of the pain. It was called Margaret because when I used to get in a strop my ex-boyfriend would call me that, I have no idea why but it just stuck so that’s what it ended up being called, although I completely forgot that my consultants name is Margaret as well.

Attributed to Gabi Cox

Now I have a bag with a cover on it so I can’t see anything, which is better because when you’re getting changed at friend’s houses and when I was with my boyfriend you don’t want to have this clear bag that everyone can look into, it’s not anything any one wants to see. Some of my family and close friends have seen it but I don’t make a habit of going round showing everyone. I mean if someone asked me to see it I would show them and when there’s a cover on the bag that doesn't bother me at all. I mean it’s still a level of privacy; you wouldn't go around getting naked would you?

It’s weird because when I was told I had the slimmest chance of having it reversed I was okay with it but that’s before I had it and now I've got it I would love for it to be reversed. It’s the first summer with Margaret and all of my friends are going off travelling but I could never go and be like ‘oh I'm off travelling for a month’ because of all the crap I’d have to take with me. I can’t eat certain things either so I couldn't go to Thailand and eat whatever I wanted because there’s certain things I'm not allowed so it definitely restricts you in that way.

Attributed to Gabi Cox

I'm staying positive though because my consultant has said that in a year they might consider reversing it. They’ll have to do loads more tests to see if that’s possible so about a year from now they’ll re-evaluate and hopefully I won’t have to have Margaret, I’d rather have the scar!

Crohn's is a tricky one, I think if you’re okay to talk about it and you don’t make it awkward then no one else is awkward around you with it. If you just tell everyone and you’re open about it then no one actually cares that much and no one is like ‘oh yeah that’s the girl with Crohn's’ no one actually thinks anything of it whereas if you keep it a secret it makes your life so much more stressful, like unnecessarily stressful and it honestly doesn't need to be that bad!

Since doing my blog I think people are more aware and through the blog I did an interview with radio Berkshire that went out to a lot more people. It just gets people talking about it more, I mean I'm not embarrassed at all and I don’t want people to be wondering ‘what is Crohn's? What’s it all about?’ and not want to ask me. I’d rather people ask me then talk behind my back and not understand it properly or be told something that’s not true In some ways it’s made me less self-conscious which is weird but Margaret’s is now a part of me and I've adapted to having her.

Attributed to Gabi Cox 

Gabi Cox, 22, Newbury

As told to Emma Jefferies