17. Crohn's: Realisation

Period: September 2012 - November 2012

By the end of September, it was clear that the Pentasa was having absolutely no effect and I was finally forced to take time off from work. I had been waiting for an appointment with a dietician since July and when I attended in October my weight was below 7 stone. The dietician was fantastic - in all honesty she was the first medical professional I had met with who genuinely seemed to want to help relieve my immediate symptoms. She immediately placed me on a liquid diet. For 4-weeks I was to consume nothing but six Fortisips (1200ml) per day and water.

Halfway through the diet I had an appointment scheduled with the consultant, by which time my pooping had eased a little and I had stopped vomiting, but I was still in constant severe pain. The liquid diet also made my A-hole burn so much it felt like acid leaking out of me! I explained that the Pentasa had done absolutely nothing and asked that I stop taking it. I was on 4g on day, which meant taking eight giant pills without any apparent benefit - in fact most of it just seemed to come straight out the other end as little white granules! My appointment was in fact with a registrar and he gave me neither a "yes" nor a "no" when I put the question to him. I also explained that I had been off work for 4-weeks and that the liquid diet had so far provided little relief. To be honest, by now I was starting to lose faith in the care I was receiving and I think it's fair to say a lot of people would have lost faith a long time ago. When the registrar showed no response whatsoever to my tale of misery I burst in to tears once more as I felt the hope drain out of me.

Prompted by my outburst the registrar went in to the next room to speak with the consultant and when he returned he advised me that they were going to refer me for an MRE. In the meantime I was to continue with the liquid diet. I left the hospital feeling very alone. For the first time, I finally resolved that I would attend A&E should the liquid diet prove ineffective. It became crystal clear that if I relied on these useless appointments I could be waiting forever for some kind of relief. It made me realise why A&E departments are struggling to cope with patient numbers! (BBC)

With every new appointment, new test and new treatment over the last few years, I had been filled with hope that I might get answers and solutions. With every new disappointment, my hope had faded a little. Having seen my life become nothing but worry and illness at a time when I should have been enjoying myself and starting my career, I was slowly starting to fall in to the abyss of depression. For me the worst part was feeling like I had no control over my life. I had been off work for over a month and working only part-time hours for several months prior to that. At 24-years old, I could see no realistic prospect of being financially stable enough to move out of my Mum's house, though I was grateful to have a roof over my head for relatively little rent. I had also watched my life quickly slide from the high of graduation and backpacking to endless pain and embarrassment. However, instead of asking for help with depression, I did my usual routine of pretending everything was fine. It's decisions like this that make me seriously question my cognitive faculties!