Before surgeryWhen I had ulcerative colitis I developed anxiety attacks, I really struggled to go out to unknown places with people other than close friends or family. I was fine at work and in my usual places. I think it started because whenever I went out I sometimes felt unwell, due to the colitis, especially after a meal, and I just wanted to go home. As soon as I got home and in my comfy clothes I would feel so much better.
The panic attacks then started to kick in, I would get so worked up about going somewhere that I would often feel sick and then sometimes I would actually be sick. I remember that I would need to take a sick bag with me to some places and I would also avoid going out at all. I went to see a show in London years ago with some friends and I had a panic attack in the middle of it all and sat out in the bar for the rest of the show. Ridiculously that felt safer.
Eventually I was given antidepressants to help with the attacks and it helped quite a bit. I also had cognitive behavior therapy which was ok but it still meant I had to do all the work, they just gave me the tools. I found that very difficult and I wanted someone to wave a magic wand.
Fast forward to my last flare and I was so ill I became depressed and anxious all over again. I was off work for months very unwell with the colitis and ended up with emergency total colectomy and a hospital stay of nearly three months.
I went through some very low times, and remember thinking that I was just free falling into a black hole. It was very scary and I just didn’t know how to get back out. I would get nightmares and my mood was very low all the time. The surgery was so big and I didn’t get time to prepare, I think this is why I didn’t cope very well with it all at first. I had a fantastic support network in hospital and back home, and I had two lots of counselling to help me talk it through. I had to have further surgery to remove my rectum and anus so also had to come to terms with the fact that I would never get a reversal.
I am now into my second year with the stoma and I am so much better. I feel near normal and feel healthier than I ever did. Don’t get me wrong, there are times when I look back and think what life and my body was like pre- surgery, also when people are looking forward to their reversals and I know that will never be me, but all in all I am ok about it and am mentally in a good place.