Life Has A Way Of Throwing Curveballs At You: Helen’s Story

Helen Joseph is a language tutor and has had a stoma for 12 years. What started off as an Ileostomy due to some surgery that didn’t go as planned, was later converted to a permanent end-colostomy. Helen irrigates as part of her daily routine.

Feeling comfortable in my own skin is what makes me happy. Although my stoma was unplanned it has transformed my life for the better. Now, it’s just another part of me, the same as my heart or lungs, and I am so appreciative of the life I am living.

“Although it was a shock at the time, I was just so grateful to be alive”

I was 48 when I first went into hospital for surgery, for a removal of part of my bowel, to repair an anal prolapse. Nothing to worry about I thought, but life has a way of throwing curveballs and, due to surgical complications, I had to go back in theatre almost immediately; this time to have a temporary ileostomy due to faecal leakage into my peritoneal cavity which threatened to cause peritonitis and septicaemia. Although it was a shock at the time, I was just so grateful to be alive.

I was fortunate during my recovery as my stoma nurse was amazing. She gave me confidence in my ability and transformed me from a complete novice into a stoma professional! I am very grateful to her. One thing I always remember is her emphasis on keeping the skin around the stoma clean and healthy, and that is something that I am still fastidious about today.

My support network

Managing a life transition can be tough for those who may feel alone, but what kept me going was my friends and family. They were a great support. I remember when I was in hospital recovering, two of my brilliant girlfriends came in with a selection of lovely tunic tops that were in fashion at the time which they had bought on the high street. They were perfect to mask my pouch accessory and became my go to outfits.  My husband was also a rock. He was completely unfazed, and so stoic, calm and supportive throughout all the highs and lows. I also managed to keep working as a language tutor which kept me grounded. 

The bumpy road to recovery 

After nine months, my ileostomy was reversed which was a complete disaster as it didn’t work and I begged my surgeon to give me my ileostomy back! Thankfully he agreed and this gave me my freedom to lead a normal life. However, just one year later I suffered a stoma prolapse and was advised to consider a permanent colostomy.  This time I was more prepared and had done my research. I decided that I wanted to irrigate (an option for those that have a colostomy) as advised by the stoma nurse, as it would suit my lifestyle better. I quickly got into a routine, irrigating my colostomy every morning which takes about 30 minutes - and that was me done for the day, just wearing a stoma cap and no pouch. As part of my daily routine I clean the skin around my stoma. Even though the risk of faecal contamination is minimal with irrigation, it is so important to look after your skin and keep it healthy, and avoid any skin complications.  

I thought that I was now done, but within four years I experienced my first bowel obstruction due to scar tissue, and I ended up in Emergency with a nasogastric tube down my throat.  Over the years this happened nine times in all, and once with a perforated bowel which was quite scary. I was accepting that this was how my life was going to be and I would just have to get on with it, but luckily I found an utterly amazing surgeon who managed to remove all the adhesions and unravel the knotted bowel. No more pain, nor bloating nor discomfort after eating. I was so happy and free!

“Having a positive mind-set and practising self-care is so important for both physical and mental health”

I believe that having a positive mind-set and practising self-care is so important for both physical and mental health. I keep myself fit and healthy by doing Pilates every day and I focus on the positives things in life rather than dwelling on the past – I don’t really think about my stoma at all now. It could be so easy to fall into self-pity and what-if scenarios, but I refuse to become a victim. To me every day is a blessing and I am indebted to my stoma and the new positive life it has given me.