Have you got a friend that’s recently had surgery to create a stoma? Are you said friend and want to know more for your own surgery? Do you have a stoma and want to educate your friends without having to have any embarrassing conversations? Do you have a question that you think is really dumb and you’re scared to ask it? Do you want to know gross details but you’re worried that your friend will think you’re insensitive?
Well, you’ve come to the right place! Here at Sunny Guts we revel in oversharing and answering stupid questions – stick along for the ride and become a better more educated friend in the process!
A stoma is an opening in the abdomen where the end of the bowel comes out – created during surgery to divert the natural flow of the bowel. The location of the stoma is dependent on the section of the bowel that is removed. When this end part of the bowel or intestine terminates outside the abdomen, normal bowel function resumes and so a bag is needed to catch anything that comes out (read: last night’s kebab). This bag is the ostomy and may have different names dependent on where the bowel is terminated i.e., colostomy or ileostomy.
These days, the stoma is generally created with laparoscopic surgery. A surgeon will create a few laparoscopic incisions around the abdomen to get access to the area, before dissecting the bowel around any affected parts. In my case with ulcerative colitis this was the entire colon, which meant I have been cut at the end of my small intestine or ileum. This small intestine end is the part that is pushed through another incision on my abdomen and stitched to the outside skin to create the stoma. The other end, the rectum end of the colon, is stitched closed. Yes, that means I still have a butthole – it’s just not connected to anything! The affected part, the entire large bowel, is then pulled out of the abdomen through a larger incision that runs vertically through the belly button – generally a couple of inches long. Everything is glued back together, and you wake up on enough horse tranquiliser to know how Keith Richards felt during the 1970s.
Why would anyone need this surgery? Well, there’s a number of reasons – but effectively it all boils down to something in your bowel malfunctioning to the point that it needs to be removed. The large bowel is responsible to taking up water from the stool and creating nice, formed poop. This is something I’ve long forgotten about thanks to all the disease and whatnot but I’m telling you – you are taking it for granted! Bowel or colon cancers are a very common reason for people to need a stoma, general more common (but not exclusively) in the older demographic, while inflammatory bowel disease is the cause for a hell of a lot of younger people. Sometimes IBD can be so aggressive that emergency surgery is required, due to a loss of blood and weight. In my case I made the decision to have surgery due to the quality-of-life aspect. I had tried almost every medication available with varying levels of success before getting to the point where I was incredibly sick on top of dealing with some nasty drug side effects.
Frequently Asked Questions – even the dumb ones
How does the bag work? Does it fill up? Then what?
Yeh the bag does fill up. Obviously as you eat over the course of the day, you’ll create output which will end up in the bag. When the bag is half full, or becoming a bit inflated due to gas, you go to the toilet and empty it into the bowl. It’s a bit of an annoying process but nothing too difficult, and you’d expect to do it 3-4 times a day. Overnight expect to be woken up once or twice to empty the bag again – somehow your brain knows to alert you when it’s getting full. It varies person to person, but you can usually safely expect the bag to last a day or two before needing to take it off and change it entirely – this consists of removing the adhesive from the seal, cleaning the stoma, and putting a new bag on. The seal is just a sticky ring that attaches to the skin on your abdomen – make sure that skin is clean and dry to get the best seal possible. The best time to change a bag is first thing in the morning on an empty stomach – while the stoma isn’t as active.
Can you fart?
Through my butt? No. Unfortunately I lose my ability for fart-based comedy which is the peak of hilarity for a man with the brain of a 13-year-old. Your stomach and bowel still create gas however – excessive amounts from carbonated drinks or swallowing air because you eat like someone is going to take the food off your plate. This gas will pass through the stoma into the bag much like output, leading to some interesting situations where it looks like you’re smuggling a balloon under your shirt.
Do you have it for life?
Maybe, some people do. The reason for getting the stoma is the greatest determining factor for whether or not it is permanent. In my case, the plan is to go back for a second surgery in which the stoma is “reversed” – a pouch is created using the last section of small intestine which is then hooked back up to my rectum and things will all be back inside my body again. This pouch surgery isn’t a viable option for many people though, who will end up having the ostomy for life, and it still may be the outcome for me despite the plan for a pouch. A lot of these things are up in the air until you go through the surgery and find out how it reacts afterwards, so fingers crossed in my case.
How does sex work?
Like normal, but I have a cool bag attached to my belly. Having sex while the bag is inflated like a balloon is obviously not ideal, so it pays to empty the bag before getting intimate. I’ve been told by stoma nurses that this takes away spontaneity, but I just think it makes you learn to be a bit sneaky. You’re always going to be nervous about starting to have sex again after surgery because it is a huge change, and there is a massive self-image hurdle to jump over. The most important part is open communication and learning to appreciate and love this funny little thing that has saved or improved your life. Remember: don’t have sex with people who don’t respect you – stoma or not.
Can it get wet?
Yeh it can get wet! Medical science is a wonderful thing and ostomy bags have come a long way. The fun thing about a sealed unit is that if nothing can get out then nothing can get in – this means I can shower, hop in a bath, or swim in the ocean without needing to worry about water getting in the bag or contents of the bag getting out.
Does it feel weird? Can you touch it? Does it hurt?
Yeh it’s kind of weird I won’t lie, something that was once inside your body is now sticking outside your body. Despite that, there is no pain. The intestine has no nerve endings so it actually can’t feel anything! You can touch it and play with it all you like; you might just look like a bit of a kook. The skin around the stoma can hurt if it breaks open or is irritated, but the stoma itself has no feeling.
Do you pay for your supplies? Is it expensive?
In Australia we pay a membership to our state’s ostomy association, which is $80-$90 a year. That foundation handles all your orders and getting supplies to you, which are all free thanks to Medicare which is our nationalised health service. Thankfully this removes the financial burden of having such a huge change! Unfortunately, if you live in a less developed country such as America, access can be limited and prohibitively expensive.
I have a question that’s not here, it might be quite dumb, and I don’t want to intrude. Can I ask it?
Yeh absolutely, leave a comment or send me a DM on Instagram for the best way to get a speedy response. I’ll most likely come back and update this as I get more questions, I have no doubt I’ve missed some! There’s also quite a difference between asking a dumb question out of genuine care and curiosity and asking a dumb question because you’re an insensitive jerk of a human. Most people fall into category A, although I’ve had a couple of Bs before! It’s important to realise that everyone is on their own journey and some people are a little insecure and stunted when it comes to these quite heavy changes – having something happen to your health makes you become more empathetic to people around you and they may just not have had that experience yet. Try to not let it affect you, there’s a positive in everything.
I want to quickly point everyone to @harrisonkefford on TikTok – he is very open about his experience with a stoma and shows everything in great detail. It was incredibly helpful for me to see everything before deciding to have the surgery, it’s a great resource.