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I am 29 with a Permanent End Illeostomy and ileal conduit (Urostomy).

My story and the reason for my stoma bags are slightly different to the majority of fellow Ostomates. It all began 9 years ago in 2007 when I was in my third year of university. I contracted Campylobacteriosis from already cooked chicken purchased in a well-known supermarket chain. Little did I know then that this moment would be the catalyst that triggered a chain reaction of multiple organ systems failing? From that day onwards 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 multiple 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 fully and had severe pain where the bladder sits. I tried all the tips to empty properly; the rocking and knees to my shoulders but still I could not urinate. The urologist team then decided that I needed to start Interstitial Self-Catheterisation (ISC) well that was an adventure! I worked in the same hospital and knew the urologist nurse but on this day she was snowed under with patients. There was no time to teach me how to ISC so I was given the box and told to read the instructions and try it out at home. To say I struggled with this was an understatement. Fighting with the toilet seat and mirror to get myself into the right position and locate where to catheterise. I had to do this twelve times a day while trying to work and still suffering from the pain, retention and clamping. During lunch time I frantically ran to the urology department for the nurse to catheterise me. After weeks of this the urology team decided it was time for me to have a urethral catheter. Looking back I cannot believe I still tried to work and run around with this bag attached to my leg. It didn’t last long though and I ended up having to leave which was such a hard decision. I had worked so hard to get to where I was but it all seemed to disappear in the blink of an eye. This turned out to be a good decision however because things then started to get worse. For some reason my body did not like the urethral catheter which brought on horrendous spasmodic pain that felt like my bladder was giving birth to it. During that period I ended up in A&E roughly every 2 – 3 months with catheter induced infections and pain relief.

Here began the period of misdiagnosis’s and the fight to get to the origin of the bladder failing. Originally they believed it was Endometriosis but after a clear Laparoscopy this idea was dropped. Other specialists were involved leading to the next misdiagnosis of Fowler’s Syndrome. This is the inability to pass urine normally due to the failure of the sphincter muscles to relax. A referral was sent to the Neurology Centre in London to see me which eventually took 3 years. I was very prone to catching infections and had treatment for an overactive thyroid.
Eventually after a couple of years, like a lawyer I put my case forward to have a Supra-Pubic Catheter (SPC) to the urology team. This was met with split opinions from the doctors, mainly because of my age (23) and the lack of an accurate diagnosis. In the end I was totally at the end of my tether with the pain and always in A&E. I was unable to do anything which affected me physically, mentally and spiritually. In 2010 I finally had the SPC which was much easier to cope with and the pain was much better.
Before Stoma Bags

While all these bladder problems were going on my bowel started to not work properly. It began with severe constipation and the inability for the bowel to engage in Peristalsis and have a movement. The only way to empty my bowels was with interventions such as laxatives, barium enemas and the Peristeen Irrigation System. As you can imagine at this point I was very thin, malnourished and in horrific pain because I could not eat, and still I had no explanation for what was happening to me. The Peristeen system was very similar to a colonic irrigation but you do this yourself. Two litres of water get pumped up into a catheter that is inserted into your rectum. The water is gradually pumped in and eventually helps a movement. In my case my bowel muscle could not even contract to let go of the water. The specialist nurse was very concerned with this and with my malnutrition.

It was decided that I needed an emergency operation to form a permanent Ileostomy. This happened in June 2012 where my stoma bag called ‘Bob’ (aka ‘Bob the knob’) was born. The surgeons said he saved my life and that I wouldn’t have been here if it wasn’t for him. Even though at this moment it’s causing me huge problems it is better than the alternative. I know it sounds funny naming my stoma bag but it is so important. In naming the stoma this allows an emotional and personal connection to help, accept and love this new part of you.

In late 2012 a neurologist got involved and was adamant that I had ‘Autonomic Neuropathy’. He chased the referral to the UK specialist Autonomic Unit at the University Collage of London Hospital in central London where I ended up being admitted and having lots of weird and wonderful tests done on me. Eventually I got the diagnosis that I fitted under the umbrella term of Autonomic Neuropathy (Dysautonomia) but the specific type I have has no name and is similar to Autonomic Failure and Multiple System Atrophy (MSA) The relief I felt, hearing that all of this wasn’t in my head and there was a reason my organs were failing was indescribable.

This was short lived however when they explained to me that there was no cure, and that my specific type of Autonomic Neuropathy officially was nameless. There was nothing they could do and would only offer me a yearly follow up as treatment. Little did I know then the lack of knowledge the medical profession have in this area! There have only been a handful of doctors I have ever met who actually knew what autonomic neuropathy and the different types were.
I moved to Bournemouth where I have had wonderful care from all the various hospital departments. It was here I started suffering from symptoms like pain, bleeding and discomfort because my bladder was extremely small as I have had a catheter since I was 21. It took me a long time to eventually agree with the doctors to have my bladder removed and an ileal conduit to be formed. Another word used is a Urostomy. The surgery took place last summer (2015) and I have named this stoma ‘Squirt’ after causing havoc when the stoma nurse changed him.
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.

Rachel.