Living With a Retracted Stoma

Today I am looking at the impact of living with a retracted stoma. If your bladder cancer treatment plan includes surgery to remove your bladder, known as a radical cystectomy (RC), afterward, your body will need a new way for urine to leave your body.

There are 3 main types of urinary diversions.

The types of diversions

An ileal conduit where a part of the intestine is used to carry urine from the kidneys through the ureter to an external bag that collects the urine, which you then have to empty.

An Indiana pouch where a new pouch is created internally to collect urine which you then empty with a catheter.

The third is a neobladder. This literally translates to 'new bladder'; an internal pouch is also created. With a neobladder, you won’t have any of the normal alerts or feelings to pass urine.

My only option was the ileal conduit

In my case, the only option was the ileal conduit which means I wear a urostomy bag.

The majority of urostomies are raised above the surface of the skin. Therefore when you attach a urostomy bag, the ostomy sits inside the bag and can drain into the bag without issue.

Unfortunately, in my case, the ostomy is retracted. This means it sits below the surface of the skin. In my case, quite a bit below the surface.

What causes a stoma to retract?

A retracted stoma can happen for different reasons, but this is the exception rather than the rule.

It can be caused by issues pulling enough bowel to the surface during surgery, scar tissue, a patient putting on weight after surgery, emergency surgery where there wasn’t time to mark up the best position, and many other reasons.¹

My stoma has been retracted since day 3 post-surgery. In my case, I believe it was just badly created, and not enough was brought to the surface.

Managing leaks

The main issue I have is the bag leaking. This is because the urine doesn't reach the bag and seeps out of the edge of the bag. This inevitably leads to more regular changes than for the average ostomate.

I use a convex bag. This is often all someone needs with a slightly retracted stoma. The bag helps to bring the stoma a little closer to the surface of the skin. I also you a convex ring with stoma paste around the edge to prevent any urine not making it into the bag and preventing it from seeping out further and lifting the edge of the bag.

I also use flange extenders around the bag to try and hold it in place and make it last a bit longer.

Sore skin

The other main issue I have is sore skin. As the urine doesn’t always make it into the bag, the urine can sit on my skin and create a burning feeling. My stoma is so retracted it sits in a kind of well in the skin.

I use stoma powder to absorb the moisture and protect the skin a little. I also use a diaper barrier cream - not a stoma-specific product, which helps to soothe and protect the skin. It contains oatmeal.

I also was prescribed by my ostomy nurse an asthma inhaler. I only use this if the skin is really bad. A couple of sprays of this help to clear up the skin.

Of course, any additional products used to treat any ostomy issue should be discussed with an ostomy nurse or your doctor prior to use.

Considering it or not?

My doctor has said he is sure he can "make a better job of it" if he was to refashion it.

This is where they try to pull out the intestine further to the surface of the skin to get it to sit further into the bag. If this goes to plan, it can be successful in reducing issues of a retracted stoma, such as leaking.²

Unfortunately, there are no guarantees.

Living with a retracted stoma is still living

Thankfully, currently, I have, for the most part, found workarounds as detailed above for the various issues. I wouldn’t say I have found a solution, as none of them are foolproof. I do still have more leaks than most, but currently, on the whole, I have things that work (this week, anyway!).

For now, I will use all the skills I learned as a girl scout, my project management skills, and my knowledge of stoma and stoma products over the last 5 years, to be inventive and creative to find solutions when problems arise.