I don’t want to be a yo-yo anymore

Date: March 2012

Looking back now being admitted into hospital within 3 months of having surgery was good for me. It made me learn to give respect to my new chronic illness and begin the road to acceptance. It allowed me to start to come to terms with the ‘new’ me and re-evaluate things. I could have started this the first time I was in hospital after my surgery but I was too focused on the short term aim of getting out of hospital for Christmas that I neglected thinking about the long term adjustments I may need to make and the long road to potential remission ahead.

Hindsight though is a wonderful thing, at the time I wanted to be anywhere but hospital. Being back in hospital felt like I was admitting defeat, surgery had removed the severely inflamed section of my bowel so why the hell was I back already?!? I feared this would be my future, yo-yoing in and out of hospital in-between flare-ups.

My stomach had ballooned and I was in acute pain, even worse than what I experienced before the surgery. However an X-ray could only find gas!! I couldn’t comprehend how that could cause so much pain. The next few days I just drifted in and out of sleep with my body wanting to rest but my stomach not letting me. I got moved back to the surgery ward that I had left 3 months previous as my surgeon wanted me under his care just in case. To my surprise I had my own room instead being back on the main ward. I assumed it was because they were waiting for a bed to be free so I asked the nurse what was the hold up. She said “no hold up, you’re in this room because with Crohn’s Disease you’re more susceptible to infections!” Great…I knew I had an autoimmune disease but didn’t realise I needed to be that cautious! But I guess as I was now a yo-yo patient they were taking no chances.

When the pain subsided it was replaced by being sick, too much to the doctors liking so an NG tube was put down my nose and throat to aspirate me every two hours. I really hate having an NG tube as it’s an outwardly physical reminder of how sick I am and something I can’t hide. It did come in handy though when it was time to have a contrast MRI as they just pumped the barium meal down it, by-passing my taste buds, allowing me to avoid the supposedly unpleasant concoction.

The results showed that my Crohn’s was active in multiple areas of my bowels. They wouldn’t be able to know how badly inflamed the areas were though without a colonoscopy but it was still too close to my surgery to perform one. I’d have to wait another couple of months for that. The news about the inflammation wasn’t a shock to me as I knew the surgery wasn’t a cure as there is no cure. It was more of a wake up call that I had a chronic illness and I needed to respect this and my body more.

To attempt to treat the inflammation I was put on steroids and azathioprine. I also required calcium and vitamin D tablets to support my bones, combating a side effect of the drugs. Iron tablets were also on the menu as I was anaemic and once home I got a nice letter from my GP telling me I’d require B12 injections for the rest of my life! All together I left hospital having to take 14 tablets a day…hello reality check!! Looking at all the boxes of pills did leave me a bit teary but I had to remind myself that 8 of them were steroids and all going to plan I would be off them in a few months and that healthier people also take vitamin tablets.

I was in hospital for 10 days and several more at home after being discharged. I probably could have gone back to work sooner but this time I wanted to be beyond ready to return as I didn’t want to overstretch myself or find out that I reacted to the drugs and then go back off sick.

Sitting around for all this time allowed me the time to think. I thought that if yo-yoing in and out of hospital was a potential future for me then I needed to do everything I could to stop this from happening. I decided to make 2012 the year of rest, the year of coming to terms with my illness and to stop torturing myself by looking back on the life I felt I had lost. I still read travel magazines but no longer for inspiration but as hope that maybe one day I would be able to go travelling again, but only if I gave myself time to adjust. I knew my future life with Crohn’s wouldn’t be this simple and that whether or not I’d be healthy enough to travel again wasn’t 100% in my hands but I needed the hope of a brighter future and I grabbed onto it.