The Forgotten Stoma by Lorna Coates

The Forgotten Stoma by Lorna Coates

Note: Images of stomas in this blog
  • What’s my Stoma Story?

Have you ever suffered from a Urinary Tract Infection and felt the heavy pain in your bladder along with the burning pain when you urinate? I lived with these symptoms which progressively deteriorated over 12-13 years of my life. 

My name is Lorna, I am 31 years old and known as “Little Miss Urostomy” on social media.

I fought a long hard battle with the NHS to try and get answers as to why my health was deteriorating at such a young age. I was finally diagnosed by two Specialists with “Interstitial Cystitis” also known as “Bladder Pain Syndrome”.

Interstitial Cystitis/ Bladder Pain Syndrome (IC/PBS) is an incurable disease of the bladder. The Bladder wall becomes inflamed, irritated and in some cases ulcers, scarring and stiffness of the Bladder. There is no known cure or cause of IC but it commonly gets misdiagnosed as a Urinary Tract Infection. The difference between IC/PBS and a UTI is that there’s no infection within the bladder therefore IC can not be treated with antibiotics. Not one case is the same, some people can control their symptoms with medication and diet. In rare cases some people have their Bladder removed to give them a better quality of life. 

In my case my symptoms were 24/7 and uncontrollable. I tried all treatments offered and I got very little to no relief at all. The only thing that helped me was strong pain killers.

In 2022 I was offered surgery as I developed end stage IC, I was passing blood clots, I was wetting myself and I was pretty much bed bound. I went through 7 hours of open surgery where they took my Bladder out in two parts and most of my Urethra also. As soon as I came off my epidural a few days later I had no more Bladder pain.


  • Did it affect your mental health?

Massively, as this is an invisible illness it was very hard for people to understand my pain. I felt like a lot of people thought I was making it up, I mean who would want to make this up?! It took pretty much all of my teens and twenties away from me and wrecked relationships. I am still on antidepressants for anxiety and depression. Around 2 years before I was offered surgery I had already made the decision I wanted my Bladder out.


  • Has the way you view your stoma/stoma surgery changed throughout time/throughout your stoma journey?

Some say I have taken to Stoma life very well, the truth is I welcomed it with open arms. My Stoma nurse recommended naming it so we named her Stella. I look at my stoma and my scars and all I see now is strength, I love what they represent.


  • What tools/resources have you found to be helpful to you on your stoma journey?

Online research and talking to people who have gone through it really helps. There’s more to the surgery than just removing the bladder, the recovery is very tough and research is a MUST if your discussing this as your next step! I have created an online private support group with a friend for those suffering with IC and discussing removal, its been really successful and we love that we can be there for those who need the support.


  • How could people better educate themselves on life with a stoma/What do you wish more people understood about life with a stoma?

Oh, now this is a question with a very long answer but I am only answering this with the one I believe is the most important. A Stoma is not just a colostomy and it doesn’t just affect the elderly. Many people have Bladder removal for bladder disease and cancers.


  • What advice would you give to new Urostomate? 
  • To not let your stoma stop or restrict what you love doing in life. The list of things that you can’t do when living with a stoma is very small compared to what you can do. 
  • You’re not alone, don’t be afraid to reach out to others online, you might just make a friend for life. 
  • Don’t forget to push your fluids to keep infections to a minimum.


Find me on Instagram- LittleMissUrostomy

Facebook Support Group- IC/PBS to Urostomy UK   

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