Hi my name is Courtney and I’m 26 years old from Scotland. I have a 6 year old little girl & a little cockapoo. I’m currently nearly 5 years post j-pouch surgery and living the healthiest I ever have with Colitis.
My stoma story began in 2017. After being diagnosed at 18 years old after 5 years of misdiagnosis’ I was finally given answers. I fell pregnant in 2016 and throughout my pregnancy, my Colitis was “in remission" as the IBD nurses call it. I gave birth to my daughter in January 2017 and from there on it went downhill. I have no idea if the pressures of giving birth affected my colitis but from then on I was in a massive flare up.
Everyday I would bleed whilst going to the toilet, I had no energy at all and couldn’t eat without being in complete agony, all whilst being up most of the day and night with a newborn baby. This lasted 9 months and in September of 2017 I eventually went to hospital in severe pain, down to 6.5 stone, malnourished and dehydrated. For weeks I lay there whilst doctors took blood tests and colonoscopies to try to find a drug that worked, they tried all avenues and I waited a few days to be approved for the final drug before an ileostomy was considered. I was given the drug and after 4 days blood tests proved that it hadn’t worked. At this point I was literally begging for a stoma as the pain was unbearable, I was so hungry but couldn’t eat and I hadn’t seen my daughter in nearly a month as I also caught C-Diff whilst in hospital. I was scheduled for surgery and unfortunately my bowel obstructed on the morning of it & I was rushed for emergency surgery, I then woke up with a bag and continued life from there for 14 months and then I was approved for reversal, to which I now have a fully functioning J pouch. In between this there has been many blockages, issues with the bag and far more in depth struggles.
The most challenging aspect of stoma surgery for me was recovery, physically gaining strength and rebuilding myself all whilst accepting my body’s new look. The most common misconception is that people automatically assume it’s a bad thing you have a stoma bag. I used to have so many people say “I'm sorry to hear" or “ oh you’re kidding". Of course you’d rather not go through that but people don’t realise having a stoma bag can give you a complete new lease of life and literally saves your life!!
I received my reversal the following year in November, so 14 months later. I will be honest and say I made my decision based on being unhappy with myself at the time and deciding I was still very young and wanted to do it sooner rather than later. I spoke with a surgeon who confirmed I was healthy and fit enough to go through with it now and continued from there.
The most noticeable difference to my life would be my confidence. Although I was extremely grateful for my bag & if I had to have one again I would wear it with pride again, I felt like I had to at least try having it reversed. I felt more confident going out in public that there was no chance of leakages etc.
I think social media could absolutely bring awareness to the mainstream as it’s such a stigmatised subject due to the nature of it. I think if we can raise awareness for symptoms and signs to look out for in a way that is light hearted but professional it would be intriguing.
People can educate themselves on living with a stoma on various platforms of social media. The NHS and Crohns Colitis UK are just 2 of many known professional organisations that have information on their websites. You’ll probably find you may know someone or someone you know knows someone that has one!