1) The red curse of beets, tomatoes and jelly
"AGHHHH I am bleeding everywhere, why is my bag full of blood, call for an ambulance, I don't feel.... Oh, wait... It's just the beets..."
Beetroot turns your stoma output a fetching shade of red, as do heavy tomato based dishes e.g. tomato soup, some spaghetti bolognaises and chilli con carnes (particularly student ones bulked out with multiple 39p cans of Lidl chopped tomatoes). This is totally harmless. Red jelly is even more of a horrifying sight as it comes out in lovely looking red chunks ("OH NO MY INSIDES ARE FALLING OUT"). Knowing this before you eat these foods can save a whole lot of panic afterwards.
2) Don't banish the mushroom
After stoma surgery, you'd be forgiven for thinking that Mushrooms were public enemy number one, along with evil sidekick Sweetcorn and his loyal cronies, Nuts and Popcorn. All over your discharge leaflets, these foods appear under the 'AVOID' category. This is because all these foods contain a lot of fibre and have the potential to cause blockages.
However, I have eaten all of these foods and more without any issue at all. The whole point of getting a stoma is to have more normality back in your life - including eating previously problematic foods.
Sometimes I've been round to friends' houses and their parents have served up skin-on vegetables or mushrooms and I just haven't wanted to seem fussy or rude. Sometimes, I've just fancied eating corn on the cob, because why not?
Chewed really well before you swallow, and taking time over these foods, there should be no problem at all. Think of size ratio. Swallowing a whole cashew nut or two might block up your stoma - but a nut crushed into tiny pieces is not going to. If you're still worried, introduce these foods one at a time, in very small amounts. If you experience a problem once, leave it a few weeks and try it again - as second time round, it may not be a problem. Mushroom lovers, your days are not done.
3) Even if you read it online, don't overuse your hairdryer
Out on the internet there are a few people who suggest 'blow-drying' the stoma adhesive plate before sticking it to your body. This is because the adhesive is slightly more sticky when warm.
However, stoma bags are actually pretty delicate things. Hold the bag too close to direct heat and it will melt. I tried the hairdryer trick for a little while and after only 20 seconds of heat, the bag began melting.
I once tried blowdrying the bag once it was stuck to my body - DON'T do this. My stoma actually blistered and burnt, and was covered in little raw patches for a few days (fortunately, stomas feel no pain). Under the flange as well, my skin was burnt raw in patches where the hot plastic had been in contact with my body. It may seem like a great idea in theory, but don't, don't, don't.
4) Waking up at night
A lot of new patients are scared about how they'll know to wake up at night when they need the toilet. It is unfortunately true that most 'leaks' happen at night when you're deep in sleep. Fortunately, there's lots of ways around this.
- After a few weeks, your body will automatically wake you up when your bag is full. Seriously. How does it know to do this? It's clever, I suppose. In the first few weeks, if you're still feeling insecure, invest in a waterproof mattress topper. Set alarms for a couple of random points in the night if you're really worrying.
- Learn your 'transit time'. This is different for everyone. To work it out, eat a meal and see how long it takes for you to need to go empty. For me with my end ileostomy, this would be about 4-6 hours, depending on the size of the meal and type of food. Once you've worked this out, make sure you eat your last meal of the day with enough 'transit time' before you go to sleep e.g. If you have a 'transit time' of 6 hours, and eat your main meal at 4pm, don't go to sleep until 10pm or later.
- Don't make your last meal of the day massive - ESPECIALLY SUNDAY ROASTS. The only leaks I ever had at night were ALWAYS down to a good old Sunday roast. I guess it's because of all the veggies and the size of the meal (I eat a lot of roast). This doesn't mean you have to miss out on big dinners - but if you're planning one, eat it earlier.
5) Blow into the bag - and other handy changing tips
Some handy changing tips:
- Just before you put the bag over your stoma, blow a puff of air through the hole so the bag is inflated. This makes it so much easier to put on, as the stoma is going into an open space rather than clinging to the front of the bag.
- Press your hand and hold over the bag for 30-40 seconds after application - this is to warm the flange and make it stick better.
- Get into a routine. If your stoma is very active, change at the start of the day before you've eaten any food at all.
6) Stifle the stoma
Lots of people worry about their stoma making 'farting' noises in public. Okay, so this does happen occasionally, but you've got several options!
- Cover your stoma fairly firmly with either the hard bit of your hand (next to the wrist), or make a 'cup' over it with the stoma in the centre of your palm. Hold it there for as long as it's being 'noisy'. The noises are not as unpredictable as you might think - if you can feel a weird 'bubbling' sensation behind the stoma, that's usually a noisy bit of gas preparing to make its way out, so you've got a couple of seconds to cover it up! Noises usually come in succession, all at once, rather than random ones on their own.
- Remember, you are more conscious of the noise than other people. They probably won't even notice.
- If they really do notice and feel the need to make a comment, a) deny it, haha b) tell them it's your stomach rumbling! Stoma 'farts' do actually sound quite like this so if mine's been noisy in a university class or similar I'll say to the person next to me, 'sorry my stomach is so rumbly today!'
7) Carrying spares
If someone's had a really bad experience e.g. leakage in public, they may feel more secure carrying spare clothes. A full on leak that has escaped the flange has never happened to me in public, not over the whole two years. I do carry a little pack of spares though - Charter healthcare send out a little travel pack that's small enough to fit in a handbag to all their customers. Otherwise, a make-up bag or small pencil case would also work. Carry with you: 1 spare bag PRE-CUT (believe me if you're in an emergency you will not want to mess about drawing and cutting - besides, it's not a good idea to carry scissors everywhere with you), wet wipes, dry wipes, and a disposal bag, + any extras that you personally need e.g. rings, paste.
So prepared with my spares I'm ready for the day
8) Getting searched and airports/planes
I've never been searched at an airport, but I have been body-searched recently outside a club. I have flown several times with a stoma. So here's my view on this.
- At an airport, wear clothing/jewellery that is DEFINITELY not going to trigger the metal detector. Ladies: no underwire bras, jewellery, piercings. Men: No belts! Remove your shoes. Empty your pockets. Give them NO reason to search you and you will most likely get through without any speculation at all.
- On the slim chance you do get searched and they feel the bag/ask about it, be honest. The more upfront you are, the less hassle they are likely to give you. You may feel mortified, but this is security's job - just remember that you will never see this person again, and if telling them you have a bag means you get through security quicker and get on your holiday without a hitch, all is well.
- Carry a medical certificate with you. You can get these from healthcare companies in different languages.
- Carry your stoma supplies in your HAND LUGGAGE, particularly essentials like bags in case of luggage loss. Remember you will still not be able to carry scissors or liquids over 100ml. Pre-cut your bags before the holiday.
- Take double the quantity of ostomy supplies you need to prevent being caught short abroad.
If searched:
- Again, if they ask, just be honest.
- When I was body-searched, they also asked to search my handbag. They also looked through my spare medical kit. Ask them to do this behind a screen or in private and they should oblige.
9) Spanx and comfizz.com
With a stoma, you should be able to dress however you want. This includes wearing tight fitting items. For peace of mind, try wearing support belts and pants found at www.comfizz.com, for men and women. They keep everything tucked away and can be a great confidence boost. Some can even help prevent hernias.
You are entitled to 6 pairs of these items per year FREE ON PRESCRIPTION.
10) Free prescription and samples
Your stoma nurse or hospital should tell you this, but I've talked to plenty of people online that hadn't heard. Anyone with an ileostomy or colostomy is entitled to apply for an NHS medical certificate that exempts them from paying prescription charges. This makes bags and other stoma equipment free, but also any medicines you happen to be prescibed while you have the stoma. You can do this as soon as you've had your surgery.
Note that the NHS specifies that only 'permanent' ostomates are entitled to apply - but even if you're planning a reversal sometime in the future, you're usually still eligible because your stoma could technically be 'permanent' if you decided not to proceed with the next operation. This is useful if like some emergency patients (such as myself) you're waiting 6 months to a year to have the second surgery.
11) Don't go sugarfree
Resist the temptation to test this one out for yourself. Sugarfree products, particularly mints and sweets, will turn your bag into the human version of the Niagara Falls, as they have a potent laxative effect.
12) Oh, and I still don't know what these are for
Legend says they're used to cover your bag's air vent in the shower. But if I've got through 2 years without the need for one, I somehow doubt they're essential.
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