Tuesday, 11 October 2016

The Bum Note...

Back Story

3 years ago, back in the summer of 2013, what doctors had always dismissed as just IBS (irritable bowel syndrome) had started to become a lot more unbearable and worrying. From a very young age, as long as I can remember, I'd always suffered with a 'nervous' tummy. I'm the sort of person that gets stressed over the smallest thing even if I know there is nothing I can do about it so I may as well not worry, I can't help but get in a state over it. This summer however, it seemed to have taken a turn for the worse. It got to the point that I lost so much blood (whilst going to the loo) that I passed out! This happened numerous time. It was then that I realised I couldn't ignore how bad it had got any longer. I needed to tell someone.
Being the anxious person I am, too nervous to tell a doctor, I confided in my Mum. It wasn't till I spoke to her that I realised how serious it actually was. You see, the symptoms I was having are exactly the same to those of bowel cancer and ulcerative colitis, both of which my parents have suffered from. This instantly raised alarm bells with my Mum seeing as she has UC and my Dad passed away from bowel cancer. It was then I decided to see a doctor.

My Symptoms

  • Various food intolerance's
  • Urgent and painful bowel movements
  • Diarrhoea
  • Blood and pus in my stools
  • Constant daily stomach pain/cramps
  • Dizziness
  • Joint Pain
  • Tiredness
Getting a Diagnosis 

Trying to get an answer for my illness was proving difficult, especially considering my family history it still frustrates me to this day that they didn't take me more seriously. At first they kept telling me it was just my IBS. Then after a lot of nagging and going back every month they finally sent me for a colonoscopy. Results came back as 'slightly inflamed' which in most cases means colitis. But no, despite my symptoms and results they then insisted it was a side effect to my anti-depressants. After a year of nagging and getting worse they FINALLY did a flexible sigmoidoscopy. That was when I finally got told I had Ulcerative Colitis.

when I was first diagnosed on steroids/trying to control weight with gym

Moving Forward

Since then I've been in and out of hospital, had various medications to manage it and regular blood tests. I thought I'd look into my condition more, as my mum had tried to shelter me from how serious it was growing up. I soon realised all the side effects that come with it and how life changing it can be. It made me feel very lucky I'd already met my boyfriend Oliver who also looked it up and stood by me whilst I was getting diagnosed. Earlier this year, back in March I ended up getting so ill whilst at work that I was admitted to hospital. It was a rather scary time for me as all the tests were coming back clear so they couldn't figure out why I was so bad and in so much pain. During that rough week I ended up meeting the surgeon and getting marked up for a stoma bag. Luckily they decided against that and thought they'd try one last form of treatment. Being marked up for the bag terrified me. It made all sort of thoughts run through my head, mostly, 'will Oliver leave me', 'what if no guy ever comes near me again', 'what if I can't become a mum'. Although I found a couple of girls on Instagram (xqueenwaspx and summervalentine_) which did give me some hope, I was still scared. The unknown is always scary.

during my stay in hospital

2 months after leaving hoospital, weight gained from trearment & swollen tummy from pain


Since leaving hospital I'm now on 3 types of medication to manage it. 2 of which are tablets (which means 9 tablets a day) and the 3rd is an infusion to which I have to spend a day in hospital every 6 weeks in which I am hooked up to a drip. When I came out of hospital I was on a lot of steroids, which I've been on and off on for the last 3-4 years. The steroids are what have probably upset me the most. They've made my body change dramatically the last few years which made my anxiety and depression a lot worse as it massively affected my confidence. Although I hate getting attached to a drip every 6 weeks its a lot better than getting a bag whilst I'm still so young. I've also gone from seeing my consultant once a month to her being so happy with my progress its now 6 monthly appointments and I'm off the steroids! It's the longest I've been off them (4 months and counting)! In the last 3-4 years due to medication I have gained a lot of weight. Pre steroids I was always very tiny, being only 5ft3 I weighed only 7 and a half stone. Not a lot but it was normal for me, everyone in my family has always been tiny. Within 2 months of being on steroids, before even being diagnosed, I put on nearly 2 stone. Since then my weight has yo-yo'd due to being on and off medication, trying to control it through exercise as I wasn't allowed to diet even though I was eating next to nothing at the time. There was a point for 3 months all I could have was smoothies! No solid food at all! And trust me, being a foodie kinda girl I struggled massively haha! Since leaving hospital back in March, where all I ate was a slice of toast each day for almost a week, I ended up at my heaviest of 10st12lbs. This to me was almost soul destroying. I know I didn't look big, and that weight is still healthy and not in any means 'fat', but from being so tiny before I felt like an elephant. To be honest, I still do. I literally felt disgusting and couldn't understand why my boyfriend Oliver had decided to move in with me that month. I struggled to look at myself in the mirror without breaking down into tears so it was beyond me how he could share a bed with me. Let alone hold my hand and tell me he loves me.
So, since coming off the steroids in June time, still unable to do any exercise due to my body still feeling so weak and not having a very good diet, (due to healthy foods I can't eat), I've managed to lose almost a stone and I am beyond happy! I do have a long way to go but the fact I can eat solid food now and not have constant stomach pain all day, everyday, not being scared to eat, its a big deal so I'm happy.
Progress is progress. For a long time I felt I'd take one step forward then 3 steps backwards. Although having colitis means I'm always kinda ill, I'll always have daily struggles due to fatigue being a massive side effect, but right now my illness is manageable.
And manageable is good for me.

having my infusion

So, this is where I'm at right now. Having daily struggles with side effects but at a manageable state. Maybe by my next appointment with my consultant, providing there are no flare ups I could be in remission. But who knows! Hoping my body will soon start to feel stronger again so I can get back to the gym as being a food junkie I need to be in the gym haha! Anyway, I thought I'd start this blog as a place to vent on good or bad days, share the little things that get to me about living with a chronic illness and maybe give people also suffering a place to share their thoughts/battles. Also hoping that maybe it gives others that don't necessarily suffer a chronic illness but know someone who does, a better understanding of what they're going through.

Much Love,