Common Ostomy Questions Answered by an Ostomate

When you or someone close to you finds out they will need surgery to create an ostomy (stoma), it can be a very scary thing to hear. The main reason - it is something quite unknown to most of us.

Even today with more people requiring a temporary, or in the case of bladder removal and the creation of an ileal conduit (a type of urostomy), some will have never heard of one before.

When I heard I would require two stomas, I had a vague idea what a colostomy was however I had no idea why someone might have one. As for the urostomy, I literally had no clue, I had never heard of the word.

Answers from an ostomate desigmatize

With the ostomy community, there is still a lack of general awareness among the wider public itself. Things are improving and more younger people require an ostomy to be created, more people are openly talking about it.

My organizations are actively engaging in awareness campaigns and social media. Organizations, such as BladderCancer.net, are making both the awareness of bladder cancer and associated treatments less of a taboo. Something which could affect anyone or anyone we know. It's certainly good to talk.

Common functional questions I've received

So, what are the most common questions I have been asked as an ostomate? Here are a few...

How do you know when you need to go to the toilet?
Officially, I don't. I have no control over feces or urine leaving my body. However, I can sometimes feel my ostomy working. For this reason, I wear an ostomy bag over my stomas to collect waste material as it leaves my body

When do you need to wear your ostomy bags?
I need to always wear them as I don't know when my stomas will be working

Can you shower without a bag on?
Yes, you can. It is a personal choice. It took me a while personally to be comfortable with this. Now I can tell when my colostomy is being quiet and therefore sometimes take a shower with two "naked stomas". I feel a break from a bag helps.

Can you go swimming with an ostomy?
Of course, you can. There is nothing to prevent you from swimming with a stoma. Some people prefer to wear an ostomy support belt if they are swimming for exercise purposes, for pleasure on vacation, many use flange extenders (extra seal around the ostomy bag) to give some additional protection.

I do find the bag degrades after an extended period in the water, so usually change my ostomy bags soon after I have been in the water

Can I use a hot tub?
Yes, you can. Much like my answer to swimming. Only with the heat, I would limit the length of time in the hot tub at any one time. I also change my ostomy bag soon after as the heat and water combined can degrade the bag.

Managing life with an ostomy

Will you always have your ostomy?
In my case, the answer is yes, yes, I will. Too much of my bowel was removed for a future reversal of my colostomy. My urostomy was created after the removal of my bladder and therefore - permanent. In some cases, a colostomy can be reversed if was created after surgery to allow a bowel to heal

I have bladder cancer, I have only been told about a urinary diversion, why do you also have a colostomy?
I had late-stage, muscle-invasive bladder cancer. The cancer had spread to other areas within my pelvic area, therefore meaning it was necessary to carry out a total pelvic exenteration surgery. This involved removing my bladder, part of my bowel, and all my other pelvic organs.

This is extremely rare and if the decision is made that the best treatment for bladder cancer is the removal of the bladder, this in most cases results in the creation of a urostomy only.

Can you still enjoy a normal sex life?
In my case, my vagina was shortened as part of my surgery. This has made intercourse an issue for me. In some cases, plastic surgery to reconstruct the vagina is possible. There are options to use dilators to lengthen the vagina.

I didn't receive any support in this area post-surgery and something many feel lacks in their post-operative care. For men, the surgery usually leaves men with erectile dysfunction issues. Of course, "sex life" is more than just intercourse, and my husband and I find other ways to be intimate.

More questions?

Would you like to talk to more people in the bladder cancer community about other ostomy questions? Reach out in our forums or leave a comment below!