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Tuesday, 23 February 2016

Two Year Update // My IBD Journey

Two Years ago I was diagnosed with Ulcerative Colitis and it's a topic I update on this blog every now and then. Recently I haven't gone through everything that's happened/happening and decided for this post to break it down in a similar way to last years post.


When I last updated it was August 2015 and since then I have been introduced onto a new drug called Humira. I am given this in an EpiPen and over a couple of weeks I learnt to inject it into my stomach. I now have to do that every two weeks and to be honest it's one of the hardest things I do as I am terrified of needles. I was also told to come off some of my medication, which I was a little apprehensive about and well, I was right to be as I ended up in a flare and had to go back onto them. 
Medication isn't going to mend it like taking antibiotics would for a chest infection. It is hard to have a chronic illness but the side effects of some of these meds are physically, emotionally and mentally exhausting. They include joint pain, headaches, fatigue, itching, sore throat, fever, chills and dizziness. Over Christmas where I was on my feet for long periods and working in an environment where I had to move a lot picking up items or bending to reach lower shelves, I felt it a lot worse than I have before because of the medication. I remember coming home most nights and collapsing on the sofa or my bed, I didn't have the energy to eat or even get changed I just wanted sleep and when I got up in the morning I did it all again. I was determined not to let it get me and I ended up breaking because I didn't take care of myself. Towards the end of 2015 I learnt to say no and realise my health comes first.

Depressive State / Anxiety

When I started to flare again I became housebound and that was for 10+ weeks. It was very, very hard and I was referred though my GP to have Cognitive Behavioral Therapy which was a godsend. I learnt to be calmer and not panic as much when my Colitis played up and although it didn't "fix" me I learnt to be the one in control mentally. I was able to leave my house, I started working again and I've started to get back on my feet. I still have problems driving the car and I do rely on my parents to get me to work and other places so I still have that to tackle but I'm not pushing myself too much just yet. I learnt to say no through CBT and it was my therapist who showed me what I was doing to myself, how much I was taking on and how that affected my anxiety. I am forever thankful to her.

Dietitian / Weight

I haven't discussed this in a lot of detail before but with all of the medication I put on a lot of weight, then I lose it, then I put on even more and it's upsetting when I wear my favourite dress and the beginning of the summer and by the end I have no chance of fitting into it. I started the gym but when I became housebound and I was to and from appointments I stopped going. I have started to again this year but recently been taking a break because of a new diet. 
I was referred to a dietitian as I find it hard to stomach certain foods and it's like the colitis says "yeah you can eat apples, but only this week, next week I'll make sure it's a trigger food". It is bizarre and because of a bad colitis day I had a consultation over the phone rather than meeting the dietitian. It was decided that I go on the low FODMAP diet, if you've never heard of it before then give it a quick google. There were a lot of foods I had to eliminated and I found it difficult to have a meal. I only lasted on it for two weeks and in that time I ate rice krispies, chicken, potatoes, broccoli, pawn crackers, ready salted crisps and gluten/free from foods as well as drinking a whole load of fizzy drinks. Everything I ate/drank was high in fat, salt and sugar and all I was trying to do was satisfy my hunger without breaking the diet. The most frustrating thing? I ended up off work for a week as it played up my colitis and I spent the majority of the time running to the bathroom. It was then decided that I drink fortijuice which has a lot of vitamins and minerals in. I've only recently started it and spent the past two days throwing up and in the bathroom. For me it is frustrating as I'm trying to get answers and be able to eat a meal without running to the bathroom half way through it. Here's to another email to the dietitian and probably another route to try so I'll keep you updated on that.


This is going to be a little "heart on the sleeve" so skip ahead if it's not for you. I turn 24 this year and I never imagined being at the point I am at in life. I wanted to be living away from home, maybe with a partner and in a full time career. I always said I'd like to be married by 25 (can manage that in a year right?) and be in my own home. Realistically I don't see that happening in the near future. Although I am applying for full time jobs and trying to find a position I can create a career out it's hard when daily travel will always be an unknown area. Each day I don't know how my colitis will act, another reason I'm making diet changes and trying so hard with the meds. I want it to be stable (well as stable as possible) so I'm not a constant let down. I don't feel like an adult and like most people you do have those little fears and apprehensions of doing certain things on your own but with UC I am now petrified. More because I don't want to be stuck. I watch friends go on holidays and be spontaneous with nights out and everything I do has to be thought through and planned. And even with all that I can wake up one morning and unable to do anything anyways. It's like that for the time being and I sometimes feel as if my life isn't moving and as each birthday comes it does get worse. So finger crossed.

I really can't believe it's been two years, hopefully this will be the year I get on track with it. As I mentioned I only update now and then but there are bloggers who post more often and I wanted to share Daisy's Blog http://www.xoxocrohniegirl.com/ as it has helped me a lot and if your going through it too or something similar it may help :)

As always, thanks for reading...

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