What Have I Learned From Having An Ostomy?

Hey Crohnies and Lucky Coiners,

If any of you have been following my blog posts for the last few years you’ll know I celebrated my second stomaversary on the 12th of December so I thought that I’d let you guys know what it’s actually like to have an ileostomy for those of you who don’t have one or may be waiting on getting surgery for one.

The surgery is pretty rough.

I remember the day I was admitted for the surgery, I’d been prepped with my little dots of where the ostomy might go a few days prior and was feeling pretty average in terms of my health, I was declining but slowly so I didn’t really notice it. After surgery however, I literally felt like I’d been hit by a bus, and not just a normal bus, I’m talking a double decker or a tour bus for at least the first 3 days but then there were definitely signs of improvement and less pain! Thank god you’ll hardly remember any of it, morphines a hell of a drug.

You’ll wake up with a massive clear ostomy bag… don’t panic!

I freaked out after surgery because I wasn’t ready to see my stoma, I was more than a little hesitant to take a peek under my covers and didn’t even know if surgery was done open or laparoscopically for 2 days until I was aware enough to feel up to taking a peek and even then my reaction was basically “WHAT THE HELL IS THAT THING, WHY IS THERE BLOOD IN THE BAG, WHY IS IT MASSIVE? YOU TOLD ME ALL MY BAGS WERENT THAT BIG, THAT’LL NEVER FIT IN SKINNY JEANS!”. You might laugh but I actually did freak out. A lot… but then my surgeon the ever magical Graham calmed me down and said; “of course there’s blood, you’ve just had major surgery and it’s an open wound, the bag’s only that big because we need to measure your stomal output over a certain timeframe and it won’t need emptied that quickly. Trust me you’ll get smaller bags and they won’t be clear, these are only clear so the doctors and nurses can see everything’s okay.” Needless to say my panic (as always) was totally needless and less than 2 days after surgery I had a nice opaque midi bag on that is tiny in comparison… now however I’d love the big bags so I don’t need to get up to empty my bag during the night and I could be lazy!

Cough and sneeze with a cushion to hold onto over your tummy.

For me it changed my life! I sneeze like 12 times in a row and had a sneezing fit the day after surgery before I knew that trick and thought I’d popped open a scar! Luckily it doesn’t cause damage but it wasn’t fun trying to control those sneezes before I clenched the cushion, then life was great again!

Don’t eat the stuff your stoma nurse warns you off or you’ll regret it… sometimes it’s worth it though! 

I’m a big fan of food. I think most people are, so being told certain foods like nuts, corn, dried fruit, seeds, coconut and mushrooms might cause blockages and you can’t digest them can be really annoying but trust me there’s nothing worse than eating a few bits of popcorn and getting a blockage that’ll make you go to hospital just so you can wait it out or get it flushed out. In my opinion though certain times I feel the pain after is worth it to enjoy some of my favourite foods like mushrooms so long as you chew really well and hydrate lots!

Don’t drink fizzy juice straight after surgery and don’t push your body to eat foods you know it can’t handle straight away.

Trust me, you’ll throw up so much you can’t even look at the food for a while! Give it a couple of weeks though and you’ll be back to normal.

Stomas can and will fart at the most awkward times!

Sometimes you either have to laugh it off or blame it on the person next to you (this is my preferred choice). I only found this out about a month after getting my ostomy when I had Chinese with my family and my boyfriend who’d only been with me for a few months at the time and mid sentence my ostomy did the biggest fart of all time! It felt great though, pretty sure I had trapped wind! There were a few seconds of silence before everyone burst out laughing!

My best advice for this is to just laugh it off, acknowledge it but don’t make a big deal out of it, I like to laugh it off in any situation, you can’t help it and you’ll make the people around you feel more at ease to have a laugh about it too!

There are a ridiculous amount of different ostomy products… 

I don’t even know where to begin with this one because it is really overwhelming at the start to try and figure out what works best for you and what appliance and system for changes you prefer but there’s literally a product for EVERYTHING.

Sore skin? There’s a spray, cream, ointment and tape for that

Got a dip around your stoma? There’s convex bags, rings and pastes for that

Nervous about your bag leaking? There’s lots of different kinds of tape to buy you more time and there’s all sorts of ostomy underwear for more comfort and stability

Bag won’t stick? There’s a powder, spray, heater and tonnes of other kinds of ointments, belts etc to try

Hate taking off your bag because it’s sore? There’s sprays and wipes for that

I have no idea how they thought of all of this stuff but I’m so glad they did! I know everyone has their own preferences and it makes the whole thing much easier because you trust it works best to avoid leaks on your clothes.

Leaks are inevitable.

This I found hardest to deal with but honestly once you’ve got a routine that works for you it’s hardly an issue anymore! I’ve had a lot of leaks since I had my bag from being in bed with my boyfriend and waking up covered in it to a bag leak during a huge lecture theatre in uni. Yes it’s stressful and it’s embarrassing but it’s much better than actually pooping yourself like I did pretty much daily before I got my ostomy. Who ever wants to be 21 wearing adult nappies like I did? Not me!

My best advice is to go to the toilet the minute you feel a leak coming on and get your bag changed. It doesn’t matter how long you take to do it, relax and it’ll stay on properly. Also if you can bring a spare change of clothes, I leave some clothes in my car alongside wipes, tissues and a towel and my ostomy supplies. This basically means that I’m covered no matter what happens and even if I leak I’ll feel much better when I’ve cleaned up.

Last time I leaked was Christmas Day when my bag was half full and I tried to squeeze in to my seat at the table, I just went upstairs, changed and told them I had an outfit change! It’s funny because whenever I’ve changed in public no one even noticed!

Have an ostomy bag. This is literally a tiny bag you can take out with you that has all your essential supplies you may need while you’re out!

This is invaluable, I used to have one before I had my bag that carried a spare pair of pants, tampons and I’m pretty sure lipstick and nail polish. These days I keep my ostomy bags, rings, tape, platic bin bags, raydar key, some painkillers, Imodium and adhesive removed spray. My little bag is actually supposed to be a makeup case so no one even knows it’s there and I can easily carry enough supplies for a week in there without even cluttering my handbag up!

Getting a repeat prescription of your ostomy supplies is magical! 

You basically pick your favourite products and when you’re sure you’re going to stick with them for a while your stoma nurse can arrange with your supply company to get them delivered each month so you don’t even have to lift a finger, they just turn up at your door every four weeks like a subscription box!

You’ll love that people can’t tell you have an ostomy

Theres a certain special feeling you’ll get when you tell someone for the first time you have an ostomy when you’ve known them for a while and they have no idea! I remember telling some friends in uni after knowing them for a few months I wasn’t in because I had an appointment with my stoma nurse and they were all so surprised because I wear really fitted clothes like skinny jeans and vest tops and they’ve never been able to tell!

You can do everything you did before surgery and even more once you’re all healed up.

I’ve been to America and Poland, been on roller coasters and water slides, wore crop tops and bikinis, did a 5k and joined a gym. Having an ostomy doesn’t stop you doing anything everyone else does, the only reason I’m getting worse is because I’ve got some other problems with needing more intestines removed but most other people get to be so much better and stay better for the rest of their life!

You’re part of a pretty special group of people!

Everyone you can meet from people online to at groups or events for ostomates are amazing. We all want to help each other and are always more than happy to give advice, chat, offer support and do everything we can to help ease you into the transition of getting your ostomy. There are so many people out there you can get in touch with, especially groups like #getyourbellyout and #ibdsuperheroes, the toilet, me and IBD and the Crohn’s and Colitis UK Forum, all of which are on Facebook who have some of the nicest people you’ll ever met and I promise whatever you’re going through, there’s been someone who’s gone through it before and can give you any information you’d like to know at any time of day!

Not everyone’s ostomy is permanent!

Depending on your own case and disease you have you have, you might only have your ostomy for a short period of time! I personally have mine for ever (a bag for life as I like to call it!) but a close friend of my family only had hers for a few months after surgery so her intestines had a chance to heal before being rejoined and now she’s back to being joined up and getting on with her life without a bag.

Some people also make the choice to keep their ostomy to avoid getting more surgery to reconnect and because having an ostomy is easier for them than how they were before. I know that in certain cases like myself, that keeping the ostomy is crucial due to the severity of my IBD I have to get my rectal stump and anus removed as I’m at a much higher risk of it turning cancerous.

You should never be ashamed of your ostomy, health or anything surrounding the apparent “stigma” of having an ostomy. 

I used to be very self conscious and to an extent I still am because I am nervous about leaking (I have some skin problems, it doesn’t affect the majority of people) and I used to be very apologetic about having an ostomy or needing to use the bathroom more often to empty my output, the noises it makes, covering up wearing a T Shirt over my bikini and a whole range of stuff that is just ridiculous! Never be ashamed of who you are, having an ostomy is a reminder to yourself every day of how much you’ve gone through and overcome. Don’t feel embarrassed to show it off, I know I’m going on holiday again this year and I’m going to be for once completely comfortable showing off my bag! If anyone gives you any sort of unkind look or comment that’s their problem, not yours! Use the opportunity to hold your head up high and be proud of your scars or take the chance to explain to the person what you’ve got an how your ostomy saved your life.

Everyone from the littlest baby to the queen poos so don’t think that you have anything to be worried about. I know I’ve never had an unkind word or any gaze that was anything other than inquisitorial so you’d be surprised how accepting people are of anything when they know what it is!

You’ll adjust to life with an ostomy, I promise! 

I was the most cynical, bitter and depressed person in the weeks before my surgery, I thought it would ruin my life. Now, however, I know that was a complete overreaction, having an ostomy isn’t any different to living life like anyone else, you go to the bathroom less, you never have to worry about taking ages doing a poo and it’s very sanitary! After you get over the initial shock you’ll be so surprised with how quickly it just becomes part of your daily routine and you’ll sometimes even forget you have it! It’s worth sacrificing the enjoyment of a poo so you can live a worthwhile life and get a better quality of life!

I’d say that’s about all I can think of right now! I might do another post like this in 2 years about what I’ve learned since I didn’t have a bum hole or belly button but for now I’m pretty confident that I have no idea what I’m in store for over the next few years!

Hope you all have a great Thursday,

Jen x

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