The Stoma Series: Stoma Myths De-Bunked!

The Stoma Series: Stoma Myths De-Bunked!

Hey everyone!

I haven’t uploaded a health post in a little while but I thought I’d talk today about some of the myths/assumptions/general thoughts I’ve ended up talking about with people to do with stomas. I do get quite a few people not afraid to ask me questions but then others that will avoid the subject entirely and not want to say a thing. Both are fine, I think everyone knows I’m completely open to talking about it now. These seem to be the most popular things that have come up and I wanted to share whether they are true or not for general education and for people who are considering the surgery. I personally have an ileostomy, so this will be mostly talking about stoma myths based on my experiences and those of people I know who have them.

I also wanted to upload this post due to the recent shocking news about Seven Bridges. Seven was a 10 year old boy who took his own life because of getting bullied about his colostomy bag. I can’t believe we live in a world where someone is bullied for something they have no control over, something that saved their life. Please educate yourselves, those around you and especially your children on differences and disabilities people may have to try and stop this sort of thing from happening. RIP Seven.

Stoma Myths De-Bunked

It’s Painful/It Bleeds

So I do get pain in my abdomen sometimes, from what I’m guessing is digestion, slight blockages, muscles healing and bruising from the operation. However, the stoma itself isn’t painful. There are actually no nerve endings in your intestines so I can’t actually really feel it when I touch it. It does bleed though, not a major amount and it’s normal but it is a live organ so it’s to be expected, really. You can get dry skin/sores around your stoma site for multiple reasons but this can more often than not be fixed with specific products.

It’s Disgusting/It Smells

I think this is the most common one. I mean, of course it’s going to smell when you empty/change your bag, it’s essentially the same as having a poo. When the bag is closed though, you smell nothing at all. Some like to use essential oils, tic tacs or odour eating sachets in their bags because they get paranoid or find it more pleasant when doing the aforementioned. It’s really not disgusting at all though, as long as you clean yourself properly and know how to look after everything, just like every human, all is well.

Your Sex Life Deteriorates

A big mis-assumption to do with stoma myths. This honestly made me laugh a bit. So many people ask this question and it does make me wonder why. Although your colon is in the same sort of area, it has nothing to do with your reproductive parts. The only thing that could dampen the experience is your own or your partners feelings towards the bag. That’s to do with confidence, insecurity or possible misunderstanding, though – nothing to do with the actual operation (unless something went really wrong, which hardly EVER happens). The best way to get around that is to just talk and be super open about it all. Once you’re both used to it, you don’t even notice it’s there. Hell if you’ve been super ill and have had an operation that’s made you feel better, it’ll probably be tons better than it was before.

It Magically Cures Your Health Issues

Now I really can’t speak for everyone on this one as everyones health and reason for a stoma is different but I’m sorry to say it isn’t just a magical cure. The amount of people who have come to me post-op and been like YOU LOOK AMAZING, ARE YOU WORKING AGAIN, LETS GO OUT AND DO LOTS OF FUN THINGS AND CELEBRATE etc. Don’t get me wrong, I am so happy and extremely grateful for the fact that some of the symptoms of my disease have gone and I don’t regret the surgery but If I’m being honest, I’m still suffering.

My disease wasn’t completely removed and its currently still active. My body was also attacking itself and being pumped full of strong medication for almost 2 years so it’s going to take a long time for my body and mind to recover and that’s without other possible complications. Also living with a stoma is a health issue in itself, it can be really bloody difficult to deal with sometimes.

You Have An Extremely Limited Diet

I think everyone has their troublesome foods but that goes for people with a full digestive system, too. Not everything is going to agree with you but obviously it can be quite a bit more dangerous for a stoma patient if it doesn’t. There are foods you are told to try and avoid with a stoma such as anything with pips or seeds and mushrooms due to the texture as the body can struggle to digest them fully or you could end up with a blockage. A lot of the time, people can eat pretty normally, though. With the odd thing or two that they’d rather avoid than deal with the hassle.

All Stomas Are The Same

Wrong. There are quite a few different types of stomas, I’m not an expert on them all. I’m not even an expert on my own seeing as I’ve only had it a few months but you can find out more on the different types here if you like.

It Decreases Your Fertility

Assuming the surgery went to plan and nothing else was affected, there’s actually not really any reason that your fertility would decrease. As far as I’ve been made aware, the only operation related to a stoma that DOES decrease your chances of having a baby is a reversal/jpouch. This would mean that your stoma is actually removed and a j-pouch is formed with your small intestine. This actually decreases chances of conceiving as after the operation there is a lot of internal scarring and adhesions which makes it a LOT more difficult for the sperm to reach the egg. I’ve been told that this decreases chances of conception by around 50% which is why it can be a hard decision to make for some women.

Life With A Stoma Is Either Easy/Amazing or Terrible

I am so thankful for forums, blogs and people on the internet for helping me through my early days with a stoma. Saying that, one thing I’ve noticed is that you often only find either extremely miserable people or extremely overachieving people. My stoma works fine for the most part, it has its issues, side effects and it can be a real annoyance, pain in the ass and get me down sometimes but I can’t say that it makes me consistently miserable. I also can’t see myself running a marathon or climbing a mountain anytime soon (or maybe ever) like a lot of people online. I understand there are some that have complex issues and difficulties with theirs and I also understand some feel like a brand new person after their operation. Currently, neither of these are me and neither of these are a hell of a lot of people and that’s absolutely fine and normal.

It’s Extremely Noticeable And Clothing Choice Is Limited

90% of the time I don’t even notice it’s there, genuinely. The bags are flat unless they fill up a reasonable amount and a lot of them have velcro bits on them so you can fold them up even smaller. I’ve had so many people comment saying that you’d never even know it was there. It’s true that there are a select few clothing items that are just no longer comfortable because of it but it’s really not that much of an inconvenience in the grand scheme of things.

Your Options In Life Are Limited

A lot of people are able to return to normal life after they are healed from their operation. Meaning they can go back to work, being a normal parent, going on holiday, exercising etc. The only real thing that would hold them back would be either their mental barriers because of the stoma, any side/after effects their body may suffer from or other health issues. Life/career options are commonly not limited in stoma patients.

You’re Malnourished/Underweight

Another big mis-assumption in the stoma myths department. I mean, a lot of people who have either an ileostomy or colostomy will have experienced issues before the operation with eating – which is why they have the operation. This may leave them underweight or malnourished but a lot of the time, post-stoma people are just so excited to be able to eat again that they gain weight like mad. This hasn’t actually happened for me, I’ve actually lost over a stone as I have sort of lost my appetite but I am definitely not underweight in any shape or form and I wouldn’t say I’m malnourished, either.

It’s Really Noisy

I can’t speak for everyone but the majority of the time mine is silent. I have seen and heard people complain about noise and being embarrassed but a lot of the time, any noise that is made can easily pass off as a stomach grumble to be honest. Or you can just put your hand over it to muffle the sound.

It’s An Easy Way Out Of A Hard Situation

No. Really really not. Deciding to have the surgery was one of, if not the hardest decision I have ever had to make. We’re 95% sure if I hadn’t had chosen to have it then I would’ve ended up having emergency surgery anyway as my disease was completely destroying my bowel/body. There were a few instances before my surgery date where we thought I wasn’t going to make it but luckily my body held out.

Deciding to have the surgery before it came to that meant I could try to prepare myself for it, meet with my surgeon and anaesthetist, ask all the questions I could possibly need answers to and I also had much more of a chance of it being keyhole rather than open surgery. That meant faster healing and less scarring. Having the choice made it harder in a way as if I had had to have emergency surgery then I wouldn’t have had to make the decision. It’s a hard way out of an even harder situation.

I think I’ve covered most, if not all things that people assumed/wondered about. I’m completely open to answering any other questions, though. I think it’s really important to talk about these things and make information about real life experiences easily accessible to educate people.

Did you have any assumptions like these about stomas or any possible stoma myths you want an answer to?

’Til Next Time,
BTB Xx
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17 Comments

  1. 7th February 2019 / 12:00 pm

    Your figure is so bloody lovely and this outfit compliments it really nicely. I couldn’t believe the news about Seven, I remember sitting and crying over it because people can just be so bloody awful, he deserved so much better. Surgery is hard enough as it is without people being shitty. I can’t believe some of the weird assumptions people make, admittedly I did used to think they were more of a pain to wear under clothes but thankfully it sounds like that’s not really a problem at all. I’m glad you mentioned about how life seems to be amazing or terrible, when you read blogs etc. about peoples’ experiences it can really seem like it’s one way or the other. Sometimes it’s okay to be sat on the fence and have up and down days – you don’t need to climb a mountain or run a marathon to prove you’re fab, you went through life changing surgery which is a feat in itself! I think everyone needs to read this post, they could learn a lot x

    Alice // http://www.accordingtoalicex.com

    • blacktulipbeauty
      Author
      7th February 2019 / 3:37 pm

      Thanks Al that means so much to me ❤️ I did the exact same, I honestly couldn’t scroll past the story without shedding a tear for the first week, I can’t begin to imagine the emotional turmoil he was in. Amen to that! To be fair, for things that I don’t know about, I’d probably think some weird things, too! It’s all about education which is why I uploaded this 😊 Yeah if illness has taught me anything it’s to be grateful and happy with what you have and what you CAN do and not be constantly beating yourself up for things that you can’t control. Sitting on the fence is much better than in the dirt! X

  2. 7th February 2019 / 2:30 pm

    I loved reading this, my friend has a stoma bag and it’s never noticeable. You look amazing but I understand the struggle you still have, I am disabled and mobility challenged, and like you I see the over achiever and the ones that give up, and I’m in the middle trying to be positive, while accepting some limits

    • blacktulipbeauty
      Author
      7th February 2019 / 3:39 pm

      Thank you 😊 It’s surprising how discreet they are! Thank you so much ❤️ It is hard seeing both, it gives people such a twisted version of what things are like! And I totally know how you feel, you’re not alone 😊

      • 7th February 2019 / 3:44 pm

        I needed your blog today to help me muddle through my own issues. X

        • blacktulipbeauty
          Author
          7th February 2019 / 3:53 pm

          Your post definitely helped me too, sometimes it’s nice to know you’re not alone 😊 x

          • 7th February 2019 / 3:59 pm

            Always here if you need me, I’m sirenmoonbee on twitter xx

  3. 7th February 2019 / 2:56 pm

    What a helpful post! I must admit I didn’t really know anything about this, so having it all laid out has been a great help to understand it better. The news about Seven is so sad too, people can be horrible and just goes to show how there needs to be more education!xx

    Hannah | luxuryblush

    • blacktulipbeauty
      Author
      7th February 2019 / 3:41 pm

      Thanks Hannah, I appreciate you reading it so much ❤️😊 The key in my eyes is exactly that, education and getting information out there! The story about Seven is so sad, it breaks my heart! Xx

  4. 7th February 2019 / 9:08 pm

    I’ll be honest, I had no assumptions at all, so you’ve answered so many questions I probably would have asked anyway (I’m a nosy cow 😉) – I can imagine it was a huge adjustment to your entire life and would never have expected you to be back to “normal” (whatever that bloody means anymore!) so soon after, let alone functioning as well as you are right now! ❤️❤️❤️

  5. 8th February 2019 / 5:26 am

    I like that you’re giving an insight about some myths. It is unfortunate that Seven was pushed to that point. It is ridiculous that there are people who bullies others over any reason. I don’t think it is disgusting since it is part of our own bodies pushing out the waste. You bring a good point about the sex life. It’s only a big deal if someone makes a big deal out of it. Otherwise, operations still go as normal, right? It is interesting to learn all about the experience with the stoma bag. Thank you for sharing this ♥.

    Nancy ♥ exquisitely.me

  6. 8th February 2019 / 11:40 am

    This is such a fantastic and informative post! I’ve learnt SO MUCH about stomas and the conditions which lead to them since Hannah Witton started talking about hers but all videos and posts like yours are useful because they are a pretty unknown thing for a lot of people. I really don’t know why people think they’d be so noticeable, they’re sticking out are they? Also, I LOVE your jeans! They’re so cute 🙂

    I’d love to see more post about this and your experiences. I find them fascinating and I always want to make sure I can gain the knowledge about these things other people have / go through so I’m not naive and clueless.

    Jenny
    http://www.jennyinneverland.com

  7. 8th February 2019 / 8:19 pm

    This was such an informative post to read with really great expalnatuons for the myths. A lot of there’s things I didn’t even know and some of the myths I actually thought were true like that it may hurt. I must say I feel a lot more educatated in Stomas now because I hardly knew anything about them at all. Great post xx

  8. 8th February 2019 / 8:29 pm

    This is SO informative, I loved it! You’re doing such an amazing job raising awareness, you should honestly be so proud of yourself. It’s interesting to see the kind of things that people ask as I assumed a few of these would be quite self-explanatory (Like the sex life one), but it’s great that you answered them all! Also I am SO in love with your jeans in this post – they suit you so well!

    Jas xx | https://thoughtsfromjasmine.co.uk

  9. 8th February 2019 / 8:55 pm

    This is such a great read. You’ve explained everything so well and such great detail. I knew nothing about stomas until Hannah Witton got hers but I think she’s spoken about a few of these topics too. I’ve heard the fertility thing before and honestly have no idea where people get such a wild assumption from. Surely anyone who did biology after the ages of 11 knows better than that? x

    Sophie
    http://www.glowsteady.co.uk

  10. 8th February 2019 / 9:56 pm

    Can I just start by saying I absolutely love your jeans??? I think it’s great that you’re so open about your stoma because it’s nothing to be ashamed or embarrassed about and hopefully other people who are contemplating the operation will be reassured by this post. My nana had a stoma but I didn’t even know half the things you’ve talked about in your post because it is still such a taboo subject for some people, but it really shouldn’t be. Great post Alice!

    Bronia | http://www.broniajane.co.uk

  11. 20th February 2019 / 9:33 am

    You look amazing Alice and I’ve loved having my eyes opened to this – I know I ask you questions a lot of the time anyway.. But it’s only because I’m interested to know and learn more! It’s great that you’re so open and willing to talk about your stoma, as I’m sure it will help SO many people – including those who don’t have one, as like I said, you’re definitely educating us which is awesome! Great post Al 🙂 xo

    Char | http://www.charslittleblog.co.uk

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