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13 Misconceptions About Having an Ostomy

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There are a large number of misconceptions around ostomies. I want to help educate those who don’t live with one and/or may need one in the future.
I had one between 2017-2018 and it was a new and challenging experience.
So hopefully this can help some people.

1. “An ostomy is only for old people.”

This is incorrect. I had my ostomy at the age of 25 and have met numerous people of all ages with them, including children.

2. “An ostomy bag smells.”

Unless a bag is faulty or the person’s had a leak, you can only smell an ostomy bag when it’s being emptied or changed. The bags are designed to contain the odor, so it’s just like someone nipping to the loo to have a “normal” poo.

3. “Ostomy bags always leak.”

I was never warned about bag leaks when having my stoma so I was mortified when the first one happened. Making sure you empty regularly and eating the right foods for your stomach can help this, as can ensuring you find the right products for you. There are a large number of brands that make different ostomy bags and also products to help keep them attached. For many people, finding the right product prevents leaks from happening.

4. “An ostomy is just for poo.”

There are actually three forms of ostomies. Two are for feces (ileostomy and colostomy) and one is for urine (urostomy). They are made from different body parts, and depend on your condition, what you’ve had removed (if anything) and why you need it.

5. “You can’t live a normal life with an ostomy.”

Many people live a full life after ostomy surgery. It can prevent issues they had prior to their surgery and enable them to have a higher quality of life. I’ve met people who ice skate, have skydived and a number of other activities.

6. “You can’t wear normal clothes with an ostomy.”

I wore the same clothes I had prior to my ostomy surgery. Your stoma is usually sited personally to you. However, there are lots of standard clothing items out there that can work for your ostomy bag and they disguise it well so you can’t tell someone has one.

7. “Your sex life is impacted with an ostomy.”

After surgery, you should take things easy, but people go on to have normal sex lives after. It can be hard for people to accept the changes to their bodies, but with support, many can get through this. There are certain types of lingerie or support belts that can disguise the bag for those feeling uncomfortable, and many people pin it out of the way so it doesn’t flap.

8. “People have a choice to go down the route of ostomy surgery.”

For some people, it is life or death so they have no choice. I received my diagnosis and was told in the same week I’d need emergency stoma surgery. Not everyone has the time to process it and decide it’s the best option for them.

9. “Ostomy surgery is only performed on cancer patients.”

Ostomies are done for a large number of reasons such as birth defects, IBD, endometriosis, chronic constipation and many other reasons.

10. “Ostomies are not permanent.”

For many people, an ostomy is a permanent procedure. It’s all subject to the reason it happened, what’s been removed and a number of other factors.
Some people do have the choice for a reversal, but they find ostomy life is best for them and that’s completely fine. It doesn’t have to be reversed.

11. “You can’t eat the things you love.”

When first having surgery, you need to be careful with certain foods and determine what your body accepts. You are told to avoid foods that can cause blockages such as mushrooms and sweetcorn. You must also chew your food. Some people find they only have to restrict a small number of foods. Everyone is different, though. It’s important to test things gradually and listen to your body.

12. “You can’t drink alcohol.”

Everyone is different. Having my colon removed didn’t cause it to have a different effect on me but for others, it can. Alcohol can act as a natural laxative, so it’s important to manage your hydration and watch your output.

13. “Surgery makes you become infertile.”

This is something I asked my surgeons. It puts you at higher risk of infertility, but they’ve seen many people go on to have children without complications. You can also have a normal pregnancy with an ostomy bag.

It’s important that we educate others on what could be hidden underneath a “normal” appearance. By addressing myths about living with an ostomy, we can help end stigma and misunderstandings.

Getty image by Povozniuk.

Originally published: February 28, 2021
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