10 Things People With Stomas Want You To Know

10 Things People With Stomas Want You To Know

1. It’s not all doom and gloom

The fact that we are living with a stoma obviously means that we have been through some sort of physical trauma or illness but there really is no need to feel sympathy or regret for us. Yes, some of us ostomates may have felt sorry for ourselves at some point but the truth is many of us are only alive today because of our stomas. Let gratitude prevail!

2. We’re not all ill

For some, the formation of a stoma is the end of their health problems. They no longer need to take medication, attend hospital appointments or experience any symptoms of the condition/injury that lead to them having an ostomy.

3. Yes, we can have children

Having a stoma doesn’t automatically mean that a person becomes infertile. I include this point because I have been asked this... several times. The majority of women with an ostomy can conceive, carry and give birth to a baby, having only to make a few extra adjustments compared to women without stomas.

4. We sometimes forget it’s there

Honestly, for many of us, having a stoma is really no big deal. A stoma can be so low maintenance that we spend very little time actually being aware of it (of course, I appreciate that there are other ostomates who are not so lucky).

5. We don’t always follow the rules

Just like any other person, we ostomates don’t always follow doctor’s orders (or, more accurately, the stoma nurse’s orders). Sometimes we eat certain foods even though we know they will upset us. Sometimes we decide to have a few too many drinks on a night out (I personally don’t drink but I’ve heard that this is the case)! My point is that ostomates still have free choice and we aren’t afraid to use it. See the picture of me with this blog, enjoying a cheeky pub lunch.

6. It doesn’t hurt ...normally

A healthy stoma is not sensitive to touch so, even though I can sometimes feel pressure from it, I do not feel pain. If an ostomate is experiencing complications or has other medical condition(s) this may be painful but you can’t really feel the stoma itself.

7. It’s not that complicated

Taking care of a stoma is not always as difficult as it may initially seem. I have an ileostomy so only change my pouch once a day which, for me, is a quick and easy task. I can even do it whilst half asleep in the morning. It only takes 5 minutes!

8. It’s not as gross as it sounds

For someone who is not familiar with how a stoma or stoma pouch works, the concept may sound a little gross or maybe even unhygienic. This is simply not true. Modern day stoma appliances are extremely effective and secure meaning output is contained within the pouch. Oh, and we don’t smell.

9. There is nothing we can’t do

So many of my well-meaning loved ones get overly concerned that I should be careful not to strain or hurt myself because I have a stoma. Having an ostomy doesn’t necessarily mean that we are fragile or weak. There are ostomates who are bodybuilders, athletes and even outdoor adventurers!

10. There’s no such thing as a silly question

As people who do not have an ostomy, we do not expect you to know everything about the ins and outs of stomas. It’s a foreign concept to many and that’s ok. If you misunderstand, I won’t be offended; the fact that you have taken the time to read this blog says everything.

Can you relate to these 10 things that people with stomas want you to know?

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by Rakhee Patel

Rakhee Patel

About the author

I'm Rakhee, I have had a loop ileostomy and now have an end ileostomy due to Crohn's disease. Happy to share my journey!

Recent Comments

  • Rajani

    Hi I had ileostomy ten years back and then j pouch. Now again I am getting ileostomy next month. Please share what type of Indian foods is suitable to take or give some suggestions. Here in New Zealand we have good dietician but no one is talking about Indian food and particularly I am from south.

  • Rakhee

    Hi Rajani, Thanks for getting in touch. What a great question you pose! My Mum and I have spent years creating a Crohn's friendly, stoma friendly way of cooking Indian food. I will gather up a list of all the tips and tricks we find most useful and share them with you in my next blog!

  • Friendsfan

    No you can't have sex through it!!! I've been asked this twice now. I don't even know what would make someone think of that question.

  • Veena

    Hi rakhee. Just wanted to say yr blogs are fab very much an inspiration. I had my colostomy formed 6 months ago after my bowel perforated A few days after having a diff opp so it was very much a shock when I was told I would have to have an emergency life saving opp n then have a colostomy formed all Beit a temp one but none the less a completely terrifying experience. Safe to say as u have said a colostomy doesn't stop u doing anything and at times i do forget I even have one for a bit. I'm due to have it reversed next month so hopefully it goes well but just wanted to say ur doing brilliantly and all yr fundraising n blogging is a true inspiration. Xxx

  • Rakhee

    Veena - Thank you for your lovely compliments. We are both inspirations to ourselves. To have been through what we have and still be here to tell the tale! Pretty cool, right? So glad to hear you are doing well. Sending you healing vibes for your operation. Friendsfan - That's crazy! ps. I like Friends too.

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