The last year has been extremely difficult for me. I have, for some reason come across complication after complication. I have been hospitalised for roughly 7 months of the year on separate occasions. The longest spell out was seven weeks, which as you can imagine, just when I am starting to get on with my life I am back in the hospital yet again! For the last few years I have been experiencing a 6-8 inch bowel prolapse outside my stoma. This is one of the most distressing things I have dealt with on my journey. A rare type of prolapse, called a stoma intussusception prolapse. This is where the bowel slides through itself and telescopes out. All together I have had about seven operations to re-fashion the stoma. The consultant told me that it is extremely unusual for surgery to fail more than twice, let alone seven times! He has even been corresponding with fellow consultants worldwide for advice on how best to deal with me.
At the moment I am suffering from continuously getting septicaemia (sepsis) and strangely enough from an unknown source. This has been put down to the possibility of the disease progressing and all I can do is be vigilant for septic symptoms. I truly believe that even after all these admissions; my life does not stop because I’m in hospital! My life still goes on. It’s just that now I have to make the most out of the situation, sharing my story and experience with other patients who have had some sort of stoma surgery or just need to chat about what they are going through!
The last 9 years of illness feels like I have achieved a degree, masters and a PHD in being ill. All the trials and tribulations of having a chronic illness and different type of stoma bags means I HAVE A STORY and if this story can help just one person to identify and feel they are not alone then I have done my job.! My aim is to spread awareness of Urostomy’s and to highlight that not all stomas are due to Inflammatory Bowel Disease (IBD) and to do with poop, but wee wee also!
Please contact me for any support or questions you have. I can be found on twitter @rocking2stomas and facebook www.facebook.com/rocking2stomas. Please follow my blog where I will post regular, interesting posts touching on important issues for people living with stomas. Hope you enjoy this blog.