Life as a double bagger

Double baggers are a very special breed in the ostomy world. We are the proud owners of not only one stoma bag but two. In my case, I have an Ileostomy “Bob” who is 5 years old and my Urostomy called “Squirt” who is nearly 2 years old. I usually get the same reaction when I tell people I have named them. That look of blankness then laughter. However, there is a method to the madness for naming them. Naming our stomas allows us to develop a personal relationship and identity. We are able to start liking this ‘thing’ and within that begin accepting that it is a friend keeping us alive. Like any relationship, there is a love/hate dynamic going on but if you cannot get rid of the stomas then you HAVE to learn to live with them. At the end of the day we know we must get along in order to make the most of life. So why not add a bit of humour to our “Serious” situation. I am not going to say it has been easy because it has been the hardest and longest struggle I have ever endured but I would not be alive today If it wasn’t for Bob and Squirt my two buddies!!

My bladder was the first organ that caused problems. I was working in Bristol Oncology Hospital as a Therapy Radiographer at 21 and I started having lots of Urinary Tract Infections (UTIs) As soon as I finished one course of antibiotics the infection would return and I would be on another course. During this time I was unable to empty my bladder properly and was retaining urine. After an Ultrasound scan the retention was confirmed and under the care of the urology department, I was advised to start self-catheterising a few times a day! This was not too difficult once I had been taught by the urology nurses. However trying to self-catheterise whilst working in a very busy radiotherapy department was very challenging. I struggled and failing to empty successfully it was finally decided that I needed to have a urethral catheter. I really struggled with this type of catheter, the spasms were horrific like my bladder was giving birth to it. At this point, my bowel issues started where the peristalsis completely halted and I could not go at all. Dealing with this and the immense catheter pain I, unfortunately, had to resign. This was difficult at the time to swallow after working so hard to qualify but I was not fit to work. This was exacerbated by the fact they still did not know the cause of why my bowel and bladder were not working properly.

After a year of the Urethral catheter which was awful I was given a supra-pubic catheter (SPC) after some persuading due to my age. Although this was slightly better than the SPC I still suffered from the painful spasms and continuous UTI infections and hospital admissions.

Whilst these problems were going on with my bladder my bowel function had failed and my bowel would not ‘push’ normally at all. The constipation was years and in the end, I had to use Coloplast Peristeen Irrigation. This eventually stopped helping and there was no option left but to have an Ileostomy. It took a while to adjust and I struggled with leaks at first but it didn’t take me long to realise the benefits and I started putting on weight. During this time I eventually got diagnosed with a very rare autonomic neuropathy disease called Pure Autonomic Failure which is the reason why my bladder and bowel failed functioned because the nerves did not work properly.

The Ileostomy helped with the pain but I was still unwell and still had the SPC. After 6 years of an SPC eventually, it took its toll on my bladder. So in 2015 after a cystoscopy, my bladder was extremely tiny, very damaged and a biopsy revealed the cells had started to mutate. It was decided that the bladder had to be removed and an Ileal conduit (Urostomy) was formed. This is where a small segment of the small intestine usually the ileum is used as a conduit for the urine. The ureters are attached to it and the surgeon brings the segment to the surface of the abdomen to create a stoma where the output is collected by a pouch. When I was first told I was concerned how I would cope with 2 stomas but looking back now it is so much better than 1 stoma and an SPC.

Having this surgery and having my bladder removed was the best decision I have ever made! I was in horrific pain, unable to walk, struggling mentally and was just existing not living my life. Although my surgery went really well I contracted C-Diff off another patient when I was due to be discharged and this led to lots of complications and a 3-month isolated hospital stay. Although this happened I still say that my life is 1000 times better with my Urostomy instead of my SPC. Before surgery, I had so many questions that went through my head and you find yourself imagining what it would be like but only after you have had the surgery and recovered are you able to really see and feel how much freedom is given back to you. Naturally, there is an adjustment period but once you learn how to look after your stoma and begin to slowly accept it, it is easy to see how much your life has changed for the better.

Recently this year I started my www.rocking2stomas.co.uk and advocating in the ostomy community. I cannot put into words how much helping others has helped take myself out of self-pity and help me with acceptance around my disease. I am also part of “The IBD and Ostomy Support Show” (https://www.facebook.com/theibdandostomyshow/) with 3 other ladies and Steve who have an Ileostomy. We are live every Thursday at 8 pm or you can catch up on You Tube anytime. We talk everything stomas and cover all topics in a friendly informal setting. I am also helping the Urostomy Association Charity raise Urostomy awareness which is very rewarding. I have found a new lease of life and bizarrely it is still in a medical but not professional setting.

At the end of the day, my stomas saved my life and they have given me a purpose and a focus. I now have amazing friends in my life because of them and a community where I can go to with any questions. I truly feel that I am not only living again but now I am thriving!

Article by Ostomy Armour guest blogger Rachel Jury. Check out Rachel's website at http://rocking2stomas.co.uk/