3 weeks until reversal - and my 12 top stoma tips

With my reversal op well on its way, I thought I'd compound some of the small but useful tips I've learnt with an ostomy. Some of these things are such tiny details that they're probably something you wouldn't think to ask - but they all come in handy when dealing with a new bag! I found out these things from other people on my way - and they definitely all helped me to live an easier life.

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.

Why 'everything will be okay' is not as comforting as people think

Yesterday, my confirmation letter came through for my reversal surgery. I won't hide the fact that as well as being excited for my stoma reversal, I'm also pretty nervous.

However much I want this surgery done and to be able to move on with my life, I'm apprehensive about being back in hospital for the third time, being put to sleep again, and potentially facing both short and long term complications of pouch surgery. I'm worried about being in hospital so close to Christmas. I'm worried I won't recover quickly enough over the holidays and will have to take more time out of university. I'm fully aware of the risks that come hand in hand with bowel surgery - infection, further surgery, or a poorer quality of life - and although I'm trying hard not to focus on the negatives, I don't want to pretend that these things don't exist.

In an attempt to make me feel better, a lot of people have told me that 'everything will be okay', or 'not to worry'. I understand that these people only have my best interests at heart, and they're trying to stay positive to keep my spirits up. I love and appreciate this. People who care about me only want the best for me, which is why they're putting on this brave face.

As well as reassuring me, they're trying to reassure themselves as well - they say that it'll be alright, because that's what they're hoping will be the case, and don't want to allow themselves to think otherwise. This post is NOT an ungrateful rant - and I don't want anyone to think I don't appreciate their support. But the phrase 'everything will be okay' just doesn't sit well with me, or with most people in the middle of fighting a chronic illness. Here's why.

My first surgery was an unplanned, chaotic, frightening experience. I was admitted on 16th December 2013, diagnosed with a condition I'd never heard of, and within 2 weeks I had a stoma bag (also something I'd never heard of). I had 7 blood transfusions, an open surgery, and spent time in intensive care. I faced all the psychological side of having a stoma bag and came through it. When I'd finally got home and recovered, I faced my second surgery with a sense of relief, saying to everyone around me: Well, don't worry, it'll be okay - nothing can be as bad as LAST TIME.

How I wish those words had never come out of my mouth.

For anyone who's followed me since op 2, you may remember just how badly it actually went. 7 days after surgery this June, when everything appeared to be going perfectly, I got up to the bathroom in the middle of the night feeling woozy and collapsed on the bathroom floor. My stoma bag was full of blood. Over the next 12 hours I proceeded to bleed heavily and continuously until I blacked out. The hospital called my parents immediately to my bedside and barred all other visitors. I was rushed for an emergency CT scan, and was told I may need further surgery - and that's the last thing I remember. When I woke up again, I found all the tubes that had been painstakingly removed throughout the week were back in: catheter, NG tube, rectal drain, drip, blood transfusion, oxygen mask and more.

Waking up from surgery, feeling great...

A few days later, tired but on the way to recovery

7 days post surgery, after the bleed, and back to square 1

I don't remember a thing about the next couple of days - I didn't wake up. When I finally came around, I was thoroughly shaken and thankful to be alive. It took months for me to recover fully, rather than the couple of weeks I'd expected. Despite this operation being planned, prepared for mentally and physically, it was honestly more frightening than the first.

For anyone reading this and starting to panic, please don't. I've since been told that there's a 1% chance of this sort of complication happening post pouch surgery. But I suppose that 1% has to happen to someone, and this time, it happened to me. I cannot be more grateful for the quick thinking of the surgeons and doctors that kept me safe.

But the point I'm making is this. I went into this operation feeling happy and complacent. I was convinced it would be a walk in the park. After all, operation 1 was the worst it could get, right? This time, I'd done it all before, it would be an easy ride - I'd had a stoma before, so what was new? Turns out that the second stoma actually took a lot more caring for than the first - and that was another harsh lesson I soon learned.

By telling myself blindly that it would all be okay, I didn't prepare myself for the possibility of things going wrong. I was almost too optimistic, not realistic, and didn't contemplate the fact that anything bad might happen to me. This time, it's why I really don't want people to tell me 'it'll all be okay'. The point is, at first, it might not be, at least not straight away.

Of course, eventually, months down the line, I'll be back to a normal way of life being healthy and happy, all being well. But immediately after the surgery, I might experience pain, frustration, regret, sickness - a whole number of things.

I bounced back, but not without a good fight

Being prepared for these things to happen doesn't make me negative - it makes me realistic. I'm still optimistic about the prospect of pouch surgery, or I wouldn't be going through with it. I understand that this operation is necessary if I want to experience life without a stoma bag. I also know that I've come this far, and shouldn't give up now - that's out of the question.

But rather than telling me it'll all be okay, I hope that people close to me will be able to say instead: 'Yes, things may go wrong; yes, you may have a hard time in hospital; but eventually, you will beat it and get better.' The same positive outlook, but not so immediate. Accepting both a positive future, but the possibility of issues in the present.

For anyone with a chronic condition, telling them 'it'll all be okay' isn't always helpful. Because that's the point about an illness being 'chronic' - it doesn't go away. Of course, there'll be good and bad times, but 'get well soon' here isn't really a fitting phrase. Therefore, the best way to support a friend with a chronic condition is to accept that they are ill - and to support them at their worst - but acknowledge that although some day they may feel better, right now they're really ill. To do so isn't to be unhelpful or pessimistic - it's accepting the reality of their condition and acknowledging it.

How having an ostomy made me lose - and find - confidence

It's now just 4 weeks until my stoma reversal, and as the weeks pass by I'm finding myself reflecting more and more on the past few years. 15th December will mark a new chapter in my life - but I'm not the same person now as I was when I first got diagnosed with IBD in December 2013.

While my illness has had some negatives - having to leave university for a year, missing out on things, physical and psychological effects - it's also brought me a lot of positives and opportunities that I would never have had if I'd stayed well. I've met some amazing people through being ill, fellow patients particularly. The strength of others fighting this horrible condition never ceases to amaze me. Over the years I've talked to adults, children, elderly people - all different ages and backgrounds, yet suffering from the same old IBD. I would never have even seen these people if it weren't for being ill.

Being ill has also inspired me. I study English Literature, but would love to do something health-related after I graduate. Working with the lovely team at Crohn's and Colitis UK has opened up lots of opportunities - such as work experience placements that have given me lots of ideas about the sort of career I might go into. IBD has also inspired me to volunteer: over the past 2 years, I've worked for the Ileostomy Association as a Young Person's Rep, for St Marks Hospital, and Over The Wall Summer Camp for seriously ill children.

But on a personal level, being ill has made me love myself in a way that I never used to before. As a 19 year old, being told I needed a stoma bag seemed like the worst thing in the world - how gross, to have to wear a bag on my stomach! Wouldn't people be grossed out? Wouldn't it make me ugly? How would I live a normal life with a stoma?

Well, apart from ditching some of my crop tops (a tiny sacrifice), having a stoma bag didn't change my life at all. Once I'd recovered, I went back to university, socialising and working as if surgery had never happened. And once I'd got over the initial shock of a stoma, I came to realise something - not only had I regained my confidence, but I'd become more confident than ever before.

Before surgery, there were lots of things I hated about my body. 'My legs are too wobbly', 'my nose is a funny shape', 'I don't like my side profile' were all common, petty complaints. I'd moan to friends about my hair being too thin, my thighs being too fat, my arms being too hairy, my curves being too small. I'd say I used to have pretty low self esteem.

Having a bag - at first - shattered this even further. Not only was I big legs-funny-nose-thin hair, now I was big-legs-funny-nose-thin-hair-with-a-poop-bag. This didn't exactly put me in any sort of 'glamorous' category. I cried about having the bag a lot. I felt ugly, and although I'd put on a brave face to my friends, inside I hated what had happened.

But after a while, I began to realise something. I began to wish I'd been more grateful for what I'd had before. All that time, while I'd been whinging about petty little bits of my appearance, I'd been healthy and carefree. Now, I would have given anything to get my pre-surgery body back to how it was, hairy arms and all.

So I decided that from then on, I'd try to love myself. My legs are alright, and so are my arms. My nose might be a bit of a weird shape, but it suits my face. And all this aside - having a bag doesn't mean I'm ugly. The scars left over from surgery when all this is over won't mean my stomach is 'spoiled'. All of it just makes up me. And I'm happy with that. As long as I'm HEALTHY, happy, and able to go about my life without interruption, who cares if I don't look 'perfect'. I'm confident just as I am.

I've already gone on several nights out where my scar is partially showing. If I want to wear crop tops, this is pretty unavoidable, as it touches the bottom of my rib line. Mostly, people don't notice. If they do, they usually don't comment - and the few that do tell me it actually a) looks pretty cool b) how neat it is (I'm fine with that!) After my surgery is over, I plan to wear bikinis by the poolside and on the beach and show off the whole lot, because why not.

I now often go on nights out with my scar showing. And why not?

The biggest negative aspect of ostomy surgery, in my opinion, is the psychological side. Physically, it becomes second hand. Changing a bag and caring for a stoma seems like a skill at first, but it really isn't. Anyone can learn how to do it. With practice, it's as easy as brushing your teeth. Once you're back in good health from surgery, having a stoma bag doesn't stop you from doing anything that you could do before.

The harder side is the mental one. The side that no amount of medical intervention can prepare you for. The feeling you'll get when you look at your post-surgery body is an intensely personal one. Nobody can tell you how you should react. At first, you'll probably feel pretty rubbish. But as with anything, time improves your mood. You do get used to having a bag - and your confidence will return. Hopefully, when it does, you can start to love yourself again.