Some of you may recognise me from my other blog (staceystoma.wordpress.com) and may wonder why I’ve set up a new blog. I decided to set up a new blog now so I can have a more up-to-date area to regularly blog about my experiences 2 years post-Panproctocolectomy surgery and start to introduce some videos talking about various IBD/ostomy things. I still have my old blog up and running for those who wish to visit and read about my experiences more immediately after my surgery and in the early days up until the start of 2014.
I will also copy My IBD Story page over for those who would like more of a full story on my diagnosis with Crohn’s Colitis and how I came to have a permanent ileostomy. For those of you who are new to either of my blogs I will briefly give you a quick history of my IBD. I was diagnosed with Crohn’s Disease at age 7 then at age 17 I moved up to the adult clinic and got rediagnosed with Crohn’s Colitis (Crohn’s of the colon). Because my small intestine had been the target for the treatment for 10 years, this meant that my colon had been practically left untreated so was in a serious state. I was put on various drugs such as steroids and Azathioprine and also had the Infliximab (Remicade) infusions after having a colonoscopy that revealed the extent of the disease within my colon and rectum. I then had a scope a year after I had started the infusions and unfortunately my IBD had got too serious and was not responding to the treatment and was not healing so it was then decided on surgery. I was originally told I would need a resection but then on meeting with my surgeon it was revealed that I would need all of my colon, rectum and anus out which would leave me with a permanent ileostomy. Because of all the pain I was in and the horrible quality of life that I had, the news did not come as much of a shock to me as I had thought, and I basically took the view that if that’s what it would take to actually give me a life and stop my suffering then I was willing to go ahead with it. The next few months I spent between home and A & E then I finally had my surgery on August 9th 2011. The surgery saved my life as they found a large abscess the size of a baby’s head on my Transverse Colon (the bit that goes across the top) when they opened me up. If I had not had this removed, then it would have been a matter of days before I did not make it, with all the other factors taken into consideration as well.
The journey has not been easy by any stretch of the imagination and the week after my surgery especially was the worst week of my life. However, I would do it all again to have the quality of life that I have now.
I am nearly 2 years and 8 months post surgery and as of recent I have had my down times with it with bag leaks etc and have times where I find it hard to accept. All in all however I embrace it the best that I can and remember that it saved my life and without my stoma (Stacey I call her!) I would not be here. I am going to University in September and as daunting as it all seems, without my operation I would not even be here to be able to work towards University and get there.
I came up with the phrase ‘Ostomism Not Pessimism™’ myself as I feel that is the attitude you have to have with having a stoma and is a play on ‘Optomism Not Pessimism’ so that’s how it started! Even on my down days, I always try and remain positive deep down and keep telling myself that it saved my life.
Thanks for reading and feel free to subscribe or leave me any constructive comments or questions you may have 🙂