The Beginning

Around a 5 to 10 minute read.

Hello! So this is something I have wanted to do for a while however I’m not going to lie I’m not good with words..! The last few weeks have pushed me to do this as I feel they have been very up and down for me. Over the next few weeks, I will divulge more but I feel that the best place for me to start is right back at the beginning.

Back when I was 14 and living in Spain, I got seriously ill, I couldn’t eat, at times I could barely drink. This went on for 4 years before my diagnosis even came. For 4 years I was told numerous things, I have bulimia, it was all in my head, it was just because my body was changing! At one point I was going to the doctors weekly, I was in and out of A&E and they just weren’t doing anything. My weight plummeted to 6 stone! My parents just didn’t know what to do anymore, until eventually, I managed to see someone who wanted to try and help.

They always say it’s not what you know, its who you know and in my case, this couldn’t be truer. A friend of a friend worked as a paramedic and said he would take a look at me, we drove to the ambulance station, a day I can remember as if it was yesterday, he asked me questions, he felt my stomach and he agreed there was something wrong. He knew a surgeon who would be able to fast track me for the right tests and could get me in for an appointment that week, I didn’t know until a few days later that he thought I may have cancer!

That week I went to the appointment, again he asked me questions and felt my stomach. He sat me down and said I had two options, I could wait for each appointment to come through which could take months or I could self admit myself on his recommendation that Sunday. At the time my Mum spoke Spanish but not fluently, I remember her asking me if that’s what he has said to me, no I said, you Spanish is rubbish, you don’t understand I said. I was scared, admitting yourself to the hospital at 18 is a scary thing to do. But after I calmed down and we all spoke properly about it I knew it was the only option. It was the only way I was going to get answers quickly and there was no way I could let my weight drop any more or bare the pain I was in any longer, so I agreed to admit myself that Sunday evening.

That Sunday, April 2010, I turned up to the hospital, I was petrified, I didn’t know what was going to happen or what they were going to find. The not knowing was the worst, was it going to be life-threatening, was it going to be curable… I was in for 10 days, had every test possible, cameras, scans, bloods, even one where I drank chalk, you can imagine what it came out like! Until we finally got the diagnosis, I had Crohn’s.

At the time I didn’t know anything about Crohn’s, I had to spend a lot of time researching, speaking to doctors and learning. As I had been 4 years undiagnosed my intestine was severely inflamed and it had thinned, however, they decided to try me on medication, 12 tablets a day. I knew by this time that it wasn’t curable but could be inactive, again over the next weeks I will go into more details about Crohn’s itself.

After the 10 days, I went home, I wasn’t instantly better and I knew it was going to be a long process however I felt we were on the right tracks. That was until a month later when yet again I had to go to A&E and get admitted again. Unfortunately, the medication they had put me on wasn’t strong enough. They decided to change one of my medications to a stronger one and once again I went home.

The month after, June 2010, was the big one for me. Yet again I was admitted to hospital, this time it was via ambulance as I was unable to walk. After an emergency scan the surgeons turned up in my room, we are going to have to operate they said, I remember asking when and they gave me the form and told me that I need to go down there and then. Due to the thining in my intestine, it had perforated and I had also had septicemia, everything that was meant to be going through my intestine was just going into my body.

Unfortunately, the surgeon that had got me admitted initially was just finishing his shift and had already done overtime so he was unable to operate on me. He did, however, stay throughout the whole operation and oversee it all. Without going into to much detail, they had to cut me open, clean my out, take out my ileum, the bottom part of my small intestine, stitch my intestine back together and stitch me back up, an operation that took 5 hours.

As my parents had their own business it was decided my Nana would fly over to Spain to spend the day times with me in hospital and we were told I would be in for a minimum of two weeks due to the recovery time. I have a lot to thank her for as she pushed me every day, as much as I hated it at the time!, and when 3 days in I was able to get up and move she made me walk a little further every time I got up. Thanks to her doing this I managed to walk out of the hospital exactly a week after the surgery, something that the surgeons said they had never seen anyone do after that surgery.

The week after surgery in the hospital was the worst of my life. When I initially woke up I was ICU, tubes out of my neck (which I still have scars from where they tried and couldn’t get in), tubes out of my hands, draining bags out of my stomach, a bandage over where they operated. I couldn’t even talk as my throat was so sore. I remember them allowing my parents in to see me and the fear in their eyes. I found out after that they had been told not to show any emotion as me getting upset wasn’t what I needed. I got moved back up to the ward and for me, I think that’s when it sank in how dangerous Crohn’s is and how much it can change your life. I knew before anyone told me exactly what they had done in the surgery, id seen it all from above, I told them all before anyone mentioned it to me and it turns out it was an out of body experience, I believe this was due to me being so close to death, they told me that id only had two hours to live and if I had have been older I wouldn’t have survived. I kept getting flashbacks of the surgery, something I still get from occasion to occasion, it’s still something I find hard to talk about and ended up taking sleeping tablets for a while.

The first time they came to change my dressing and clean my wound I didn’t know what to expect, it had been covered with the dressing and I didn’t know how big it would be. It was big, it was full of staples, which for the record kill when you get them removed! I remember crying and thinking I would never wear a bikini again, I thought it had ruined my life, now I just accept it as part of me and my story.

The draining bags, oh my, well they were the most painful thing to get removed, your skin starts healing around them and they are kind of stuck! They came to remove them the day I was leaving, they started and I told them to stop until my Dad arrived, I needed to hold his hand! Later that day, I walked out, everything out, just the staples that had to stay in a bit longer and would be removed at the doctors.

That week changed my life and there have been up and downs since, but over the last ten years, on a whole, things have got better for me and there are more medications now than when I got diagnosed back then. Hopefully one day there will be a cure. I want to let people know about the daily struggles and the ups and downs, I’m going to try and be as open as possible as I can be and share as much a possible with you all.

Thank you so much for reading my first blog
Much Love
Chlöe x