The big one

Yesterday was my biggest and best day at the hospital so far. After being off steroids for a week and feeling better than I have in a long time I couldn't wait to go and see my gastro nurse to find out what the next step for me was. Before seeing Deborah I was weighed (I've lost weight!) and measured (I've grown an inch!) and then we went to her office to talk about how I've been recently. My previous blood test showed that my bloods were normal, however Tuesdays showed some inflammation but this is normal for someone who has just come off steroids. I don't really have any symptoms at the moment and the good news is I have been taken off all my medication except Azathioprine and Humira isn't on the cards for me yet!

The other great news is that Deborah agreed I can go interrailing so we booked our tickets and are going on June 5th! I can't believe it is actually happening!

Latest hospital appointment

Today I had another check up with my gastro nurse Deborah. It has been a month since my last appointment and a few things have happened since then. I've had a couple of bad spells with picking up illnesses and one morning spent being sick for 6 hours after a chilli (damn tomatoes!) but overall I'm feeling okay. The main problems for me have been the side effects with my steroids which is why I'm relieved that the nurse has agreed I can begin to reduce them again. In the next 3 weeks I should be off them completely and I hope this means I can say bye bye to the moon face, even Deborah said i look 'steroidal!'

It all sounds great but I could see they didn't have much confidence in my ability to be just on the azathioprine so I have been given some information on Humira so I'm prepared in case that is my next option. Humira is an injection i would take every 2 weeks and is also an immunosuppressant and would be taken alongside my azathioprine. The thought of injecting myself with something isn't pleasant but neither is surgery which is the step after that. Today was the first time that surgery actually seemed like a possible option which was scary and has really hit home.

On the advice of my nurse I'm really going to re think my diet (the fact I've put on more weight is also a factor!) I always feel hungry but now I need to look at what I'm eating and change it. I am on a low fibre diet but for me the problem is how much carbohydrate I eat so my focus now is more protein like oily fish and chicken. Fingers crossed this will help me feel better and loose some of the weight I've gained!