Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.
I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).
While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.
I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.
Stoma tips and life-hacks: #1. Keep Hydrated
This might be something you hear a lot, but it is so important when you have an ostomy (and even when you don't) that you keep your body hydrated at all times, especially in summer. But when you have an ostomy you are at greater risks of dehydration and dehydration can also cause fatigue. I have also been told by my stomal therapy nurses to drink an electrolyte sports drink at least once a day to help replace the salts and minerals that my body is losing. I drink a 1 litre drink of this a day plus a couple of litres of water. But I know when my body is feeling dehydrated (and especially when my output is more watery I get tired, really shakey and have no energy. Read: my tips on avoiding a watery output
#2. Your boobs become a valuable asset
An important thing to remember when doing an ostomy bag change is that in order to get the most out of the bag and to prevent leaks you need to a) have a good seal and b) you need your bag to be sticky... so whenever I do a bag change the first thing I do is put the bag I intend to use tucked under one breast, while the seal/mouldable ring (I use coloplast mouldable rings) is placed under my other boob. I sit there for at least 5 minutes before starting the back change process so that it has time to heat the glue. Reason I use my breasts is that my stomal therapy nurse in our first consult told me "placing under your boobs is one of the warmest parts of your body and makes things more stickier". If you don't have boobs you can utilise, read the next tip.
#3. Invest in a hair dryer
In all honesty, the very first time I bought a hair dryer in all my life was the first day I was home after being in hospital from my bowel surgery, I remember sitting on the toilet naked and crying as I was about to do my 10th bag change for the day, I was sore, my skin was sore and I was like "f#$% this, I can't do this anymore". My husband kept asking "what can I do to help" and as it was middle of winter and cold I couldn't produce enough body heat to keep my bags sticking... so my husband had the best lightbulb moment ever and ran over to the supermarket and purchased the most decent looking hair dryer they had (from memory was about $20) and he plugged it in and sat there heating the bags up... they became so much more sticky! I now take my hair dryer everywhere with me!
#4. You'll find many uses for your hair dryer
Apart from your hair dryer being used to make your bags more stickier, I also use mine to help dry my bag after a shower especially when I don't need to do a bag change. I am one of those people that can get a few days out of each bag so I just sit there for about 5 minutes after my shower drying my stoma bag and stomach. Also, it is great to use in winter to quickly warm up your body after a shower, I don't know about you but where I'm from it gets so cold in winter!
#5. Avoid foods that cause blockages
One thing you really don't want when you have a stoma is a blockage, trust me when it is not only painful but is rather scary. There is a list of foods that you should avoid because they don't break down or they often would in people who have all their bowel. I remember when I first had my stoma I had a craving for Hawaiian pizza (Ham and pineapple) and imagine my horror when out come pieces of pineapple whole! Same goes for peas, corn, nuts, coconut and some foods like celery and tomato also don't break down. Your stomal therapy nurse can provide you a list of foods to avoid.
#6. Avoid foods that cause winds
Foods, when you have a stoma can a bit of a nuisence whether it is foods that cause blockages (mentioned in #5) or these can cause wind. Wind, when spoken about when you have a stoma is referring to your stoma farting.. and sometimes it can be rather noisy (when you don't want to be noticed for the girl with the farting tummy), or cause your bag to fill up quickly with air (sometimes so much your bag literally pops off or explodes). Although, sometimes stoma farts can't be avoided and just happen. But my husband is so sweet, when we are in a meeting and my stomach farts and I start turning red he just makes noises or coughs to draw the attention away... what a sweet heart!
#7. Avoid drinks that cause winds
Foods aren't the only reason for wind or fart production coming from your stoma bag, what you drink also plays a big part. Foods that are fizzy and gassy or alcohol can also cause wind. I also find after I have had aneasthetic from a gastroscopy, ERCP or from other surgeries that my bag fills up with more gas too.
When out and about: #8. Take your stoma supplies kit everywhere you go when you leave the house
This should become part of your routine, I have two stoma kits one I keep in my bathroom and the other is a smaller and discreet version I keep in my handbag. Trust me when I say that when you don't have your kit on you, you'll probably experience a bag leak. I know my worst bag leaks in public have been when I didn't have a kit on me and it was horribly noticable through my clothes. Was a horrible and traumatising experience and one that brings me to my next piece of advice...
#9. Always pack a spare change of clothes
I find if I am going to a conference where I will be gone from 8am to 6pm or when I was doing studying on campus at Uni (and can even apply for work situations), have a big day of shopping planned or spending a good part of 16 hours travelling to Sydney to see specialists and driving home, I always take a change of clothes. I at least pack one change of pants, a shirt and a pair of undies. Thankfully, I am a bit of a crazed nut when it comes to my clothes and I have 4 pairs of the same pair of jeggings and they are the most comfortable versatile pairs of pants I have ever owned, so thankfully it just looks like I change my shirt.
#10. Jeggings or any elasticised pants will become a staple in your wardrobe
I wear jeggings... there I ADMIT IT... and I am not ashamed! Thankfully my jeggings actually look like jeans and are almost as thick so you can't really tell, but I found it so uncomfortable to wear pants with zippers and buttons, as I found they always sat RIGHT.ON.MY.STOMA and when my bag would start filling up either the bag would explode and I would be left in an embarrased heap, or it was rather uncomfortable. I love my jeggings that they are elasticised waist and can wear them up higher over my stoma and much more comfortable.
#11. Baby wipes aren't only used for babies
I know what you choose to clean your stoma comes down to personal preference, I know some prefer to buy some chux sheets and cut up to use as a rag for cleaning your stoma, or others use wet toilet paper.. but personally I prefer baby wipes for a number of reasons. Firstly, they come in handy travel packs that can fit in your handbag; secondly, they are always wet and if you are out and about and don't always have access to water it is handy; thirdly, I am sensitive to how things feel on my skin and find baby wipes are much smoother where I find cloth rags are rough and scratchy. I use huggies shea butter baby wipes and have for years. I also sometimes (when at home) sit the wipes in a small container of warm water to remove a lot of the chemicals and to water it down. But most of the time I don't bother.
Stoma kit advice: #12. Add scented garbage bags into your stoma kit
For the first couple of bag changes I was relying on using plasic shoppings bags to dispose of my stoma bag, and my husband wanted to try something when shopping one day and found these scented garbage bags that are small in size, and not only do these help to mask the smell of the contents of the bag when doing a bag change, but if you happen to be somewhere that there isn't an immediate place to dispose of in the bin and need to carry it in your handbag, it is discreet and you won't smell it. Just double bag it to ensure one layer doesn't pierce and the contents goes through your handbag.
#13. Invest in some sort of room spray
Have you ever emptied your bag when you're in a public rest room, and you feel so embarrassed by the smell coming from your cubicle that you hide and hope no one realises it was you when you emerge from the change room? Well if you have, you're not alone. So many times I was left feeling embarrassed that things were a bit too smelly and spraying toilet spray (if you're carrying a whole can around in your handbag) can not only be bulky but just as noisy... so I have the perfect pocket sized solution for you that was given to me as a Christmas gift last year, it is a thing called Room spray by scentsy and I have it in my handbag and in my stoma kit and promise there is no more embarrassing moments in public toilets! You can read my review of it here!
#14. Always have at least 3 of each item on hand in your portable kit
I have developed a bit of a rule when it comes to my stoma kit that I have with me in my handbag, is that I have at least 3 quantity of each item in my supply kit (excluding my scissors, stoma powder). So I have three stoma bags (in case I have more than 1 leak or accidentaly pierce a hole when cutting out the hole), I have a handful of adhesive wipes and barrier wipes, a handful of the brava elastic tape (banana wafers I call them), 3 mouldable rings and at least 6 of the scented garbage bags (in case I need to double bag, or a bag gets a hole in it). Here is a guide and checklist I wrote for when packing for a holiday with a stoma!
Storing your supplies at home: #15. Have a cupboard within a reach of your toilet
I learnt very early on, how much of a hassle it is when you need to do a bag change and you're stuck sitting on the toilet home alone and can't reach your supplies. I was lucky that I have a large bathroom which could perfectly accomodate a cabinet that fits in between the toilet and the shower, which I have filled with stoma supplies. It also acts as a bench/table for me to lay out my supplies I need to use too. And to the untrained eye, guests just think it is a towel cupboard! But I do know not everyone can have a bathroom that is as accomodating, so you could look into getting a portable trolley with shelf space underneath and a flat table like top and you can wheel it into the bathroom when you need to use it, and when it's not in use you can store in the linen cupboard or wardrobe etc.
#16. Never wait until you're on the last handful or box of supplies before you re-order
Postage can always be unpredictable here in Australia, so I find it is always best to have a buffer when you need to re-order your next order of supplies. I find once you are almost at the last box to order your supplies that way you can allow for any delays in postage arriving, or if you have any unexpected bag leaks.
Mental preparedness and a stoma: #17. When doing a bag change play some music
I know sometimes I get rather flustered or overwhelmed when doing a bag change and especially found this was the case when I first had my surgery. I now have it as a part of my bag change routine that I have some music playing in the background which helps me to feel calm. Others might find that by playing a movie or tv show on their ipad/TV can be a pleasant distraction too.
#18. For me, my life truly began when I had my stoma surgery
I know that it is very easy to fall into the trap of thinking pre-surgery that your life is over and that you won't be able to live a normal life once you have a stoma. I know I was guilty of thinking this way, but my life honestly was given back to me when I had my stoma surgery. Before my stoma, I would be house bound because I had irritable bowel and always needed a toilet near by but also that going to the toilet and eating was a very, very painful experience. I can now enjoy going places, going out to dinner eating foods I once couldn't eat and I have more freedom now. I have control back over my life and my bowel was no longer defining me or what I did in my life. Although there is the chance of bag leaks when out and about and there is more involved when you go 'number 2' these are manageble and long term think of the how much life you were missing out on!
#19. If he truly loves you, having a stoma won't matter
I know sex and a stoma are two taboo subjects, but just because you have a stoma doesn't mean you won't ever be intimate with your partner or husband ever again, and if he loves you he can look past the stoma and not make you feel insecure about having one. Just because you have a stoma doesn't mean you're no longer considered sexy or attractive, you just now have a new adaptation to your body. If you feel insecure or conscious about your stoma during intimacy, there is lacy bag covers you can wear or put a towel over your stomach. But no one if they truly love you will make you feel ashamed for having something that saved your life.
#20. You can still swim when you have a stoma
When I first had my surgery, I was a bit saddened during summer when everyone was going to the beach and enjoying the water or swimming in the pools, I was worried because I had a stoma that this wasn't for me anymore. I was worried the bag would fall off during swimming and would be humiliating, but when I eventually realised I can go swimming I was so much more happier. While I admire those who can rock a stoma and a bikini, I don't quite have the confidence yet to do so (or have a bikini body) but I feel more safer and secure wearing a one piece that has a lining in the stomach area and I feel this gives me more confidence when swimming and isn't a noticable giveaway that I have a stoma. I also love doing water aerobics and find it is much enjoyable for me having a stoma than exercising and sweating and my bag becoming unstuck.
[end of advice]
While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!