Trying to explain my IBD…

I’m going to try and explain my IBD but I’m still getting to grips with it all (it’s almost been 3 years and I’m still confused!)

I believe I’ve had IBD throughout most of my life. Symptoms first started getting bad at age 13 but I kept it to myself for a long time. Because I didn’t share it with anyone I got intense anxiety which probably didn’t help the IBD. After I sought help the doctors made me believe I caused the symptoms in my own head. “The mind is very powerful” they said and so on so forth being fobbed off for years…

As the years went by I struggled more and more. Some people used to think I had an eating disorder but the truth is that I don’t like or enjoy eating because it causes me pain. I am OK with this now but before when I was undiagnosed I was terrified of eating and what it was doing to my body. Also not eating terrified me. So it was hard. Being a teenager it was confusing because I had a mind that wanted to understand everything and not understanding what was happening to me was making me go crazy.

After continually bothering the doctors and being fobbed off with “period pains”, “anxiety”, “IBS”, etc. I finally got referred to a gastroenterology consultant. I went to the appointment. The doctor touched my tummy and did a few blood tests and sent me away telling me “I’m too young to have anything wrong with me.” This managed to convince me I was fine and I was being over-dramatic so from then on I just ignored the symptoms as best as I could and tried to get on with my life.

Maybe my IBD wasn’t so bad at this point but I was still suffering. I had a stomach ache every single day. I couldn’t concentrate at school. Food often made me sick and gave me pain and I had blood loss everyday. I had convinced myself that there was nothing wrong with me and that these were symptoms of stress from the other things going on in my life.

Then it all got bad a month after I turned 18… I remember getting increasingly bloated. It was not unusual for me but this was something else. It was as if someone had stuck an inflated balloon up my t-shirt. My bowels had swelled from all the inflammation. It became really hard for me to eat and I didn’t go to school so I could sleep for 20 hours a day. I was practically bed bound. I had to sleep up-right because I would awake screaming randomly with pain in my chest. This went on for months. I had such severe indigestion and heartburn.

I ended up in A&E a few times sobbing on a chair waiting to be seen with my exhausted mum who was woken by me every night. I was always sent away from A&E for being “stable”. One night in A&E a doctor examined me and he said “I think I know what you need. You need an investigation for Inflammatory Bowel Disease. But we can’t do it here as long as your blood pressure and heart rate is OK you’re not severe enough to be treated in A&E and need to see your GP.”

Like I hadn’t already tried that.

So back I go to the GP and he discovers my bowel obstruction… Finally it’s not in my head! We tried every medication we could and nothing worked. I endured a few weeks of agony and sickness and eventually it worked itself out. And I had my referal to Gastroenterology…!

I knew IBD was a possibility but I never thought I’d actually have it. I have heard about it from people and online/in the paper and felt so sorry for people suffering with what sounding like such an awful illness. I still do 💗. First up I had my camera test under sedation. Not fun but needs must. (Don’t worry it’s 2015 and I’m now a pro.) I remember being high as a kite but watching my insides on the screen and hearing the doctors talk to each other. I asked “is that me! Is there something wrong with me?” A nurse replied, “Yes but we’ll explain to you when you’ve come round!” I laughed – the drugs.

I laid on my bed coming round from the sensation. I would of been going home shortly but had to stick round a few more hours because I went quiet, closed my eyes and my blood pressure dropped dangerously. It just felt like going to sleep! A nurse came round and gave me a sheet explaining my results. I had biopsies taken of my insides to be sent away for testing but they revealed what they found. They found proctitis, inflammation and ulceration of the large bowel and an area called the ileum in my small bowel. I felt a massive relief! I was diagnosed with Indeterminate Colitis … Which means my guts are inflamed but they’re not sure whether Ulcerative Colitis or Crohn’s Disease is to blame… But the culprit should reveal itself over time.

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Then came the treatments. I tried everything I was offered at first! I got some weird rashes and everything I seemed to take made my symptoms worse… Especially the bleeding. Nothing made me better the only thing that didn’t make me worse was Asacol (mesalazine). I tried 2.4grams a day which is 6 tablets. This did nothing so went up to 12 tablets/4.8grams. I tried this for probably 2 moths but I just wasn’t happy and didn’t see any improvement. I think my nurse was a bit disappointed that it wasn’t working and so was I. I was trying to finish my A-Levels and figuring out what I wanted to do with my future but the IBD was making it stressful.

My nurse and consultant decided I give steroids a go. Prednisolone. Prednisolone has some nasty side-effects but is also a life saver. I have a love-hate relationship with Prednisolone. Whilst I hate the side-effects, I knew there is a light at the end of the six-week tunnel… Remission. My past 3 steroid courses have put my relapse into remission and I am currently on my 4 round in almost 3 years – which I think is pretty good going. I will write another post all about my adventures with Prednisolone.

After being diagnosed in Spring 2013 I managed to get my first job in July 2013. The job is full-time and the first few months were hard adjusting and visiting the doctors when I could and even A&E in the evenings after work to manage my disease as best as I could. I’ve had a lot of ups and downs trying to manage IBD and a job but over 2 years later I am still working in my first ever job full time and about to start my Degree with the Open University.

Bambi x

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