Rachel – My two stomas

05 June, 2017

I am a 30 year old woman who has been ill for 9 years. I am what the Ostomy world would call a ‘Double Bagger’ I am a proud owner of an Ileostomy called “Bob” formed 5 years ago and a Urostomy called “Squirt” that was born 2 years ago.

I have started blogging my journey, called rocking2stomas.co.uk, and I am one of the ladies in “The IBD and Ostomy Support Show” that is shown  live every Thursday at 8pm on YouTube. However you can catch up any time. We are like the loose women of the Ostomy world! The other ladies blogs are Crohnsfighting, Colitistoostomy and the Spooniemummy.

Having both an Ileostomy and a Urostomy I can see a HUGE difference in the online support and knowledge of Urostomates. Over the last few years something amazing has happened! Through the courage and strength of brave Ostomates sharing their stories and fabulous pictures the stigma around Ostomys has been challenged and the general public are now more aware of them. However the majority of people, and even some healthcare professionals, still only believe that stomas are due to bowel problems (and poop). They are unaware of Urostomies and that they are stoma bags containing urine due to urological disease, neurological conditions, birth defects or trauma.

Urostomates are like the middle child in the Ostomy world! Unseen, underestimated and misunderstood they are not given the same amount of attention as the others. Like a middle child we as Urostomates must try a little harder to be heard.

So that leads me to my story and the reason for my stoma bags. It is slightly different from the majority of fellow Ostomates.

It all began 9 years ago in 2007, I was in my third year of university when I contracted Compylobacteriosis from a ready cooked chicken purchased in a local supermarket. I recovered from the food poisoning but continued to feel unwell. After numerous consultations with various medical experts I was eventually diagnosed with Pure Autonomic Failure an Autonomic Neuropathy disease where my bladder and bowel were starting to fail. This rare disease was believed to be dormant in my body until I contracted Compylobacteriosis. Little did I know that the food poisoning would be the catalyst that trigged a chain reaction of multiple organ systems failing and the birth of my 2 stomas.  From that day on my life would never be the same again.

After 6 months I began to have severe and frequent Urinary Tract Infections (UTIs) I was given numerous doses of antibiotics to clear the infection but as soon as I finished the course I would have the symptoms of another one, then one day I was unable to empty my bladder and was in complete retention with horrific pain. The urologist team decided that I needed to start Interstitial Self-Catheterisation (ISC) which failed and I ended up having a Supra-Pubic Catheter (SPC) for 7 years until, I had my bladder removed and an Ileal Conduit (Urostomy) Surgery in 2015. This was the best decision I have EVER made and I can honestly say I now have some quality of life back. I ended up having a few complications and this admission lasted 3 months in isolation because of C-diff, TPN nutrition, colitis, sepsis and Stoma Stenosis but I still believe it was worth it. With my SPC I felt I had died inside and was in so much horrific pain I didn’t want life to continue. Today I grab life and live everyday to the best of my ability.

Prior to my bladder failing, my bowel began to fail and in 2012 I ended up with an Ileostomy. This surgery wasn’t really an emergency but I only had 2 weeks to prepare myself. I suffered from chronic debilitating constipation. I hadn’t been to the toilet normally for 3 years and had to use ‘Peristeen Irrigation’ with rectal catheters in order to go. The ileostomy took a while to get used to and I suffered from accidents but it didn’t take long  to notice I was gaining weight and looking and feeling much healthier.

My Ileostomy causes me a lot more problems than my Urostomy and I have had to have 8 refashion surgeries on Bob because of the 6-8inch prolapse. Now surgery is no longer an option and I am learning to live with it. The last 2 years I have been admitted almost every month with unknown recurrent sepsis which has now damaged my kidneys but i keep fighting.

Even though I have accounted a few complications with my stomas over the last few years I still would not want to swap them. I truly believe that even after all these admissions; my life does not stop because I am in hospital! My life still goes on. It’s just that now I have to make the most out of my 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! I can honestly say that without my stoma bags I would not be here today. Life doesn’t stop because of your ostomies, it is the beginning…