Rachel is a great friend of mine who I also co-host The IBD & Ostomy Support Show with. She has an ileostomy like me but also a urostomy so is known as a ‘double bagger’ in the ostomy world. Rachel is extremely knowledgeable and does an amazing job advocating for other ostomates. She is working immensely hard to raise awareness of urostomies. September is urology awareness month and as my youngest son suffers from a urology condition, Rachel is sharing his story on her blog. I asked if she could write a post for me with some information for people who don’t know much about urostomies. She has taught me an awful lot through reading her blog and I am so pleased to be able to call her a friend.
Hi I’m Rachel and I blog over at Rocking2Stomas and I am what’s known in the ostomy world as a ‘Double Bagger’. I have an ileostomy (formed in 2012) and a urostomy (formed in 2015) due to a rare neurological disease called Pure Autonomic Failure. Having both types of stomas I have seen a HUGE DIFFERENCE in the level of awareness and information available to urostomates.
My bladder failed at 21 while I was working in a busy Radiotherapy and Oncology department treating cancer patients with radiation. I started getting lots of UTIs and my bladder stopped emptying properly. I was taught by the urology specialist nurse to use Intermittent Self-Catheterising (ISC) a few times a day, which was a nightmare working in a busy hospital. In the end this stopped working and I was given a urethral catheter where the bag was attached to my leg. It was at this point I had to resign from my job because it was a nightmare to cope with and the spasms were horrific. It felt like my bladder was giving birth to my catheter and was extremely painful. In the end I was given a Supra-Pubic Catheter (SPC) which goes through the gap in the pubic bone into the bladder. Although this was better, it was not ideal and eventually after 6 years of this it took its toll on my bladder.
In 2015 I had a routine cystocopy to check my bladder and it was in a really bad way. My bladder was extremely small, very damaged and the results of a biopsy showed that the cells had started to mutate. Therefore, within 2 weeks, I had my bladder and lymph nodes removed and a urostomy formed. My life is 1000 times better now than it was with the SPC, and even as a double bagger life is so much better than it was.
A urostomate is somebody who may have had their bladder removed and a urostomy (medical term Ileal Conduit) formed due to urological disease, trauma, neurological conditions or birth defects. This is where a small segment of small intestine usually the ileum is used as a conduit for the urine. The ureters are attached to the conduit and the surgeon brings the segment to the surface of the abdomen to create a stoma, where the output is collected by a pouch. It is important for me to point out that there are different urinary diversions that surgeons may perform. If you would like to know more about this please read this post.
Here are my top five things us middle children should know:
1. Use a night drainage system at night! This is recommended for urostomates, however, I am aware that not everybody will use a night bag and prefer emptying their pouch at night compared to being tethered to the bed. Although this is personal preference all literature suggests that it is advisable to use a night bag, due to any potential reflux of urine back into the kidneys when your bag is full and you do not wake up. Also because the urine may be sitting there for hours there is a higher chance of getting urinary crystals on your stoma. See my post about urinary crystals here.
2. Change your night bag and connectors regularly every 5-7 days.
3. Always make sure you have night bag connectors in your hospital bag as they are like gold dust when you get admitted!
4. Change your urostomy pouch in the morning – through experience I have found it is far easier and less messy doing it in the morning. I do it before I start drinking, as it tends to be more active than my ileostomy, especially if like me, you drink a lot!
5. Preparation is key when changing your pouch – having bags cut ready etc is handy if your urostomy is particularly active.