As part of 'The IBD and Ostomy Support Show' last Thursday, we covered some of the reasons ‘Why some people may have ostomies.’ Stephie (aka Colitis To Ostomy) put a poll out across a group she admins and the results were surprising. Personally, I thought it was amazing because sometimes I used to feel a bit alone and left out because to my stomas were not formed because of Cancer or IBD (Even though I now have Diversion Colitis because of the ileostomy). It was good for me to see that there were other ostomates that have had similar complex Neurological Conditions and ended up having an Ostomy. So this got me thinking and I decided to roll the poll in the 'Urostomy Awareness Group' to see ‘Why People have Urinary Diversions?’
To start with I will explain the different types of Urinary Diversion which can be confusing and the reasons why people end up with them. Then I will discuss the results of the polls and why I found them really interesting!
What is a Urinary Diversion?
A urinary diversion is a surgical procedure that reroutes the normal flow of urine out of the body. Urine flow may be blocked or need to be diverted for many reasons, some of them are because of:
- Injury to the urethra through trauma
- An enlarged prostate
- Birth defects of the Urinary Tract or bladder
- Kidney, Ureter, or bladder stones
- Conditions causing external pressure to the urethra or one or both Ureters.
- Tumours of the genitourinary tract—which includes the urinary tract and reproductive organs—or adjacent tissues and organs
- Chronic Inflammation e.g Interstitial Cystitis
- Nerve damage to nerves servicing the bladder muscles.
- Disease process causing damage to bladder lining or the muscle structure of the bladder.
In some cases, the bladder will be removed (Cystectomy) and in other cases, the bladder is bypassed.
Temporary Urinary Diversion
Temporary urinary diversion reroutes the flow of urine for several days/ weeks or years. Temporary urinary diversions drain urine until the cause of the blockage is treated or after urinary tract/bladder surgery. This type of urinary diversion includes urinary catheterisation (3 main types) and a Nephrostomy.
Urinary catheterisation involves placing a thin, flexible tube called a catheter into the bladder to drain urine. Urinary catheters may remain in place for several days or weeks while tissues heal after urinary tract/bladder surgery or treatment of a urinary blockage. In my case, I had a suprapubic catheter (SPC) for 7 years until I had a cystectomy and Ileal Conduit due to the cells mutating in my bladder.
- There are 3 types:
A Nephrostomy involves a small tube inserted through the skin directly into the kidney. The nephrostomy tube drains urine from the kidney into an external drainage pouch usually attached to your thigh in the daytime. Depending on your reason to have a nephrostomy sometimes you may have to have one in each kidney.
Permanent Urinary Diversion
Permanent urinary diversion requires surgery to reroute urine flow to an external pouch through an opening in the wall of the abdomen. This is called a stoma or an internal reservoir inside your body that is surgically created and catheterised from advanced bladder cancer ranks as the most common reason for bladder removals. bladder damage may result from nerve damage, birth defects, trauma or chronic/long-lasting—inflammation. Nerve damage severe enough to require permanent urinary diversion generally occurs from Multiple Sclerosis, among other diseases; spinal cord injuries; and damage caused by pelvic trauma or radiation exposure. The most common birth defects requiring Bladder surgery is Spina Bifida and Bladder Exstrophy. Chronic bladder inflammation can result from severe cases of Interstitial Cystitis or chronic urinary retention. Interstitial Cystitis is a condition that causes the bladder lining to become swollen and irritated, leading to decreased bladder capacity. Urinary retention is the inability to empty the bladder completely due to the muscles in the bladder not working correctly.
Ileal Conduit (Urostomy)
This is the most common type of permanent urinary diversion. This is what I have! During surgery, a segment of Ileum is used for the diversion of urinary flow from the ureters. The segment is resected from the intestines with the nerves and blood supply intact and the ureters attached to it. One end is closed while the other is brought to the outside of the abdominal wall to create a stoma Sometimes the surgeon will use the appendix to create the stoma. The urine flows through the newly formed Ileal conduit (urostomy) and the stoma into an external pouch. The pouch has an outlet for releasing urine into a toilet.
The small intestine produces mucus naturally. The segment of intestine that was used to form the ileal conduit will keep making mucus. The mucus will collect in the pouch along with the urine. This is normal, although at first a bit weird to get used to. If this becomes a problem there are things you can do with diet and drinking lots of water to help control this.
In cutaneous ureterostomy, the surgeon detaches one or both ureters and attaches them directly to a stoma. This is rarely formed however a surgeon may do this procedure when the bowel cannot be used to create a stoma due to certain diseases and conditions or exposure to high doses of radiation. One or both of the ureters are redirected from the Kidney and brought out directly through the abdominal wall. An opening may be placed on one side or both sides of your body. You will have a pouch for each opening.
Continent Urinary Diversion
Is an internal reservoir that a surgeon creates from a section of bowel. Urine flows through the Ureters into the reservoir and is drained by the patient. You can empty the pouch by inserting a catheter (a thin, flexible tube) into the stoma and use it to drain away the urine. Most people need to empty their pouch about four to five times a day. There are 2 types of continent urinary diversion: Indiana Pouch and a Neo-Bladder.
An Indiana pouch avoids the need for a stoma bag and is a more complicated operation than the ileal conduit. It involves the creation of a pouch or bladder inside the body, usually using part of the digestive tract and is emptied intermittently with a catheter. A surgeon makes an internal pouch which has 3 main parts: The formation of a reservoir to hold the urine, the formation of a channel to allow urine to flow out of the reservoir and the continence mechanism, which keeps the urine in the reservoir until it is convenient to empty it.
A neo-bladder is also called a bladder substitute where a surgeon creates an internal reservoir from bowel that connects to the ureters at one end and to the urethra at the other end. Since this type of reservoir connects to a urethra, urine empties from the reservoir in a more natural process. However, the neo-bladder does not function as well as a natural bladder and in some cases, a catheter must be inserted through the urethra to completely empty the reservoir. There also may be a higher chance of incontinence. Only certain people qualify for this type of urinary diversion and surgeons carefully select eligible patients.
The Reasons Why People Have Urinary Diversions –The Poll Results
I have looked through the internet and have noticed that most sites and documents state 5 main reasons why some people may need a urinary diversion. These are
- Bladder Cancer
- Damage to the nerves that control the bladder (Neurogenic Bladder)
- Birth defects
- Chronic inflammation of the bladder
However, the poll has highlighted that there are many more reasons for a urinary diversion that people may not be aware of. So for this research, I sanctioned the poll across the 'Urostomy Awareness Group' on Facebook. I included as many reasons as I could but if I had missed any out there was an option for them to be added to the poll.
So in total 225 people took part in the poll who have a urinary diversion of some sort! The results were very surprising!
[All Results were taken from a pole on Urostomy Awareness Facebook Page]
Pie Chart and Bar Graph Results From the Poll
The 3 things that surprised me were:
- A number of people that have had urinary diversions due to hospital malpractice were very shocking. My other showgirl Stephie put out a similar poll on another group and she found this was quite high for ileostomies and colostomies as well.
- Again, I didn’t realise that radiotherapy damage would be so high with 10 people. Considering I worked in radiotherapy before I got ill at 21 this resonated with me. I remember we covered long-term damage of radiotherapy but back then I didn’t realise how much some of the damage was when treating a different organ.
- Interstitial Cystitis was the 2nd highest reason with 32 people, making up 14.2% behind Cancer at 40.8% I was surprised that more people with urinary diversions had them for IC compared to birth defects which came in 3rd with 28 people out of 225 making up 12.4%
These figures were interesting and personally, I would love to see a bigger research project cover this subject across the board! There are figures I read once that 80% of urinary diversions were due to Cancer. This small poll has shown that that figure may not be as high because it seems that the other reasons for urinary diversions are increasing. Figures show that IC, Fowlers syndrome, overactive bladder and neurogenic bladder are on the increase and hence more people are in need of a temporary or permanent urinary diversion.
To help with raising awareness of all types of urinary diversion there must be MORE RESEARCH regarding AETIOLOGY (Causes of...) people requiring this type of surgery.