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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?