J pouch day 16

Just over 2 weeks post-reversal surgery, and everything is still going great. I'm so happy with the progress I've made so far.

This surgery and recovery has really been a welcome surprise. After op 1 and 2, it took months and months to even feel vaguely like my normal self again. When I came home from uni and had this final surgery, I was worried that a month wouldn't be enough time off before I had to go back. Now, it's seeming like plenty of time as I already feel so much better!

The J-pouch function isn't perfect yet, but it's already at a manageable stage that allows me to have a normal routine. I can hold off going to the toilet for a long time if I want to. When you need the loo with a pouch, it doesn't feel like it did with a colon - it's more like a feeling of pressure in the pouch, and if it's really full then you'll start getting a slight stomach ache as well. Even when the pouch isn't connected (when you have the loop ileostomy), it partially functions and fills up with mucus - this gives you some idea of how it feels to empty a pouch. You still get the same sensations of pressure/stomach ache when it needs emptying, even before takedown.

Yesterday, I went into town to meet a friend and do some sale shopping, and when I was in one shop (really far from a toilet) I started needing the loo. Instead of dashing off to the nearest bathroom though, I was able to distract myself by looking round the shop and the feeling soon subsided. I didn't actually need the loo again until hours later.

I've eaten a lot of different vegetables now, all of which have been fine for the pouch. I also ate a couple of mushrooms the other night, but they were very well cooked and soft.

My scar has completely healed over now. The other day, I was worried I had an infection, as the stitch sites were weeping a cloudy yellow fluid - but as the dissolving stitches gradually fell out (sometimes helped with a little bit of a pull from me - a bit of an ouch), each little hole healed over very quickly. My stomach has now returned to its normal shape - it was slightly swollen for over a week after surgery.

The biggest issue for me right now is night time toilet visits. I'm currently getting up twice a night to go to the loo - it was 4x at first! - which is a bit irritating. Once a night I could handle, but two is quite disruptive to sleep. Fortunately though, as I got used to eating my dinner early/not overeating, the frequency went down. I had the tiniest of night time leaks (I mean so, so tiny) the other night after I'd eaten raw carrots and cucumber on a buffet at about 9.45pm and then gone to bed at 11pm (come on, that was sort of asking for it).

I'm starting to learn that a big part of J-pouch life is keeping an organised routine. Skipping meals or not drinking enough worsens pouch function, but keeping hydrated and eating little and often really helps to keep things regular.

I'm off to a friend's house to celebrate NYE tonight - in the meantime, wishing all my readers a very happy New Year and hoping that 2016 brings good health to all of us.

J pouch days 7-11

Merry Christmas and a Happy New Year to all my readers! Here's hoping you've had a healthy and happy festive season.

Less than two weeks after my J pouch reversal surgery, and things really could not be going better. I'm amazed and thrilled with my progress. So much has happened in this past week that I've kept forgetting to update! Unlike the previous surgeries, where it took me months to feel like my normal self, I already feel fantastic (and it's only day 11).

Feeling fab!

I accept that I can't speak for everyone with a J-pouch. Some people really struggle in the first few weeks, going to the toilet multiple times a day and worrying they've made the wrong decision. But for me, the pouch is already fantastic. I am so, so happy with my choice.

In the first week (up until about day 7), I was worried. I was going to the loo a lot, getting up around 4 times a night (really!), and the butt burn was excruciating! I felt really miserable around that time. The broken nights of sleep didn't help. I'd been eating a pretty bland diet, cutting out all spicy or fibrous things, yet still my bum felt like it was on fire, and the pouch was really hard to empty. It felt like I was constantly constipated! I'd get belly ache, and at some times it felt like I'd sat on a cactus (a horrible spiky feeling down there!) For that short time, I worried I'd made the wrong choice.

Then, almost overnight, things started to show an improvement. By day 8-9, I'd suddenly got to grips with the pouch emptying. It's not like going for a 'normal' number 2 - it's very hard to describe. With a rectum, you've got lots of muscles working all round, whereas with a pouch it's just a ring of muscle at the bottom that's doing all the work. I've found that bending right over helps, or standing up when I think I've finished, waiting 30 seconds and trying again. Initially, I'd be in the bathroom for up to 10 minutes at a time, straining a lot and not knowing when the pouch was empty - but very quickly I've adapted, and it now takes less than a minute to empty the pouch satisfactorily.

The night trips have slowed down, too. With a combination of eating earlier, but also more general improvement, I now go 1-2 times per night. If it gets to 1, I'll be happy - I always had to get up once per night with an ostomy bag.

I've not had one single accident, though. Not even at the beginning. If I need the toilet at night, the pouch wakes me up. I've not even had minor leakage. By using wet wipes rather than loo paper and applying Bepanthen (regular nappy rash cream available at any pharmacy) after every bowel movement, the butt burn is well under control. A friend of mine from the US also very kindly sent me some Calmoseptine to try, a type of nappy rash cream that is not available in the UK - apparently this is the very best remedy for bad butt burn.

By day 8-9, the frequency has decreased massively too. I'm going to the loo now about 6 times per day, which is around the average for a J-poucher - yet it's been less than 2 weeks, so I'm likely to see this decrease even further.

So, to put this into perspective, here's a list of the things that have improved by day 11:

- Frequency: Started off by going to the loo 20 times per day initially, gradually decreasing - now at around 6x per 24 hours.
- Butt burn: Started off as very painful - now minimal, and well-controlled with cream application
- Diet: Started off with a bland diet e.g. plain fish and meats, mashed potato. I've now eaten: cabbage, green beans, salad, stuffing, tomatoes - all with no bad effects
- Night time: Started off getting up 4x per night - now down to 1-2

And here are some things I'd still like to improve further:

- Frequency: Even less!
- Itching: Rather than butt burn, I get a lot of itching down there, which is pretty annoying. If this could shift, that'd be great.
- Diet: Add more things into my diet, including problem foods eg. mushrooms, which I plan to do soon
- Night time: Once a night (or even none - I can dream!) would be perfect.

The stoma scar is still healing - I saw the practice nurse on 23rd December, who checked it over for infection (it was fine) and gave me new dressings, as the old ones seemed to be irritating the skin and wound. It's quite large and bumpy, and will take a few weeks to heal, but it's already closing rapidly.

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Out and About

As things have started to get better, I've gone out and about. My first trip out was on 21st December to a fish restaurant in town, seeing some friends where we exchanged secret santa presents. As it was my very first trip, my dad drove me to the door of the restaurant, then picked me straight up at the end. It tired me out, but it was so nice to get out, dress up and feel like my normal self again. My pouch was still a bit hard to empty at this stage, so I was feeling quite frustrated, but going out made me feel so much more human! Eating pasta at the restaurant proved a brilliant choice - pasta is great for slowing everything down - and it was tasty too.

At the meal!

Seafood pasta - yum!

On the evening of 21st, we also had some family friends round and went to the local pub for some food. I really was tired by this stage, but the pub is only round the corner, so we were able to come back to the house straight after where we chilled out.

On the evening of 23rd, I braved it again as my parents and I went to a gathering at a friend's house, then around 9.30pm my parents drove me to another friend's house to catch the end of a Christmas party. I'm strictly off alcohol, but still enjoyed chatting to people and catching up. As it was quite late and I felt confident, I ended up staying overnight without any problems!

On Christmas Eve, we went to a gathering at another family friend's house in the evening, which was lovely. I even drove my parents there and back (it's only 5 minutes away in the car, but it was still a small achievement).

On Christmas Day, I enjoyed a Christmas Dinner with nearly all the trimmings!

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I know it's early days, but already I am so happy with my choice. So many scare stories online try to put people off trying a pouch - to the point where some people are too afraid by what they've read to consider a stoma reversal. Some bad stories say 'it's like having UC again, you might be incontinent, it's safer to have a bag' - yet personally, it's more like before UC, I'm totally continent and already getting back into enjoying life. Admittedly, I've had a smooth ride so far - no pouchitis or other issues yet - but for now, I'm loving my pouch.

Merry Christmas!

And here's a little something for Christmas...

On the twelfth day of Christmas my doctors gave to me...

12 'yummy' Fortisips
11 nasty cannulas
10 Clexane injections
9 blood transfusions
8 weeks of moonface
7 rounds of morphine
6 Bristol stool charts
5 awesome scars!
4 CT scans
3 operations
2 weeks of ciclosporine
and one IBD-free body!

Merry Christmas everyone <3

Why I will always be grateful to the NHS for the way they handled Christmas

Far too often, we hear about how winter is a terrible time for our NHS. Stories of long A&E waiting times, bed shortages and poor staffing have been known to flood the media around Christmas, striking fear into patients who have to go into hospital over the festive period. As early as November, major publications warned of a 'winter crisis' on its way.

It's true that our health services become more stretched at Christmas. Whether it's a rise in festive-related accidents or admissions from over-indulgence, or because vulnerable people are more likely to become ill in the cold winter weather, hospitals do become busier at Christmas. Added to this, staffing can be short over Christmas, and these things combined have the potential to lead to problems.

However, as someone who spent Christmas Eve, Christmas Day, Boxing Day, New Year's Eve and New Year's Day in hospital back in 2013/14 - and had major emergency surgery on 2nd January - I can only praise the NHS for the care and kindness they showed to me during that time. Nurses and doctors work incredibly hard over the Christmas period, sacrificing days with their own families to care for their patients. While lots of us are cosying in with our Christmas dinner and Downton Abbey special on Christmas day, plenty of surgeons, consultants, doctors, nurses, dieticians, physiotherapists, porters, cleaners and others are working around the clock, saving people's lives and making them comfortable on some of the hardest days of the year to be in hospital.

When I was admitted to A&E on the evening of December 16th 2013 and diagnosed the next day with severe Ulcerative Colitis, I still held out hope that I'd be home for Christmas. As I was given my first dose of intravenous Prednisolone through a cannula, I was told by a lovely gastroenterologist that in most cases, a whiff of this drug under a patient's nose was enough to send their IBD into remission. As I'd never heard of IBD or Ulcerative Colitis before, I spent my days googling the condition, and soon came to realise just how serious it was, but had hope that the drugs they were giving me would work.

When after a few days the steroid treatment did nothing, being prescribed intravenous Ciclosporine dashed any hopes that I'd be going home for Christmas. When given via infusion as it was to me, treatment with this immunosuppressant requires constant supervision in hospital. I remember crying as I was told I wouldn't be going home for Christmas. Christmas Day in hospital sounded completely miserable. I remember saying to my mum that 'Christmas isn't happening this year, I'm not celebrating it', but thank goodness she put her foot down and said that festivities were going ahead, whether I was in hospital or not. When my mum and dad turned up on the 25th in head-dresses and santa hats and handed me my own one to wear, I knew I wasn't going to escape the Christmas spirit even if part of me wanted to.

Every single person working at the hospital did their utmost to keep Christmas 'festive'. The ward sister decorated Ward F21 with garlands, lights and even a Christmas tree. The Salvation Army did their rounds on Christmas Eve and sang us all carols (me and my dad broke down together over 'It Came Upon a Midnight Clear'). Porters whistled and sang Christmas carols as they wheeled me down for my daily X-ray, checking for signs of toxic megacolon. We all got a Christmas present in the morning - soap and a sponge - and even a Christmas dinner (although I was on a pretty limited diet at the time).

The nurses, particularly, handled Christmas with the utmost kindness and sensitivity. Although I'm sure on the inside there's plenty of other places they'd rather have spent their Christmas day, each nurse made such an effort to be smiley, helpful and make the day special. They worked tirelessly to keep us all well cared for, even though staffing was a bit short. They made the best of what first seemed like the worst Christmas ever - and for that I'll always be grateful.

One New Year's Day, instead of spending time relaxing with her family, my amazing consultant surgeon spent her afternoon sat talking me through stoma and J-pouch surgery, letting me ask any questions I needed and explaining things over again if I didn't understand. At this point, it hadn't been confirmed that I'd need the operation - that only became clear at about 11pm that night when I had the massive bleed out that made surgery the only option. The next day when I needed rushing into theatre, my surgeon and her team were there, removing my colon and saving my life.

Afterwards, I was so ill that I was admitted to the High Dependency Unit, where I was provided with round-the-clock-care. For the first week and a half of January, I was moved to a surgical ward where I was cared for until I was discharged. There I was introduced to stoma nurses, who spent the start of their January teaching me how to care for myself and get my dignity back before I went home.

While our NHS may not be perfect, I cannot thank them enough for the way they handled Christmas 2013, and every treatment I've had since. I have nothing but praise for the way that my condition has been treated over the years. The NHS didn't just save my life in 2013, they also saved Christmas, for me and all my worried family and friends. Their professionalism, dedication and kindness made a horrible time bearable. If the NHS was struggling that winter, I just didn't see it. I will forever be impressed with the care I received that meant I saw it through to 2014.

This Christmas, too, I hope that through negative press and politicians' warnings, we can remember just how amazing our NHS really is - and give credit to the medical professionals and hospital staff who give up their festive period so that we might see another one.

J pouch day 6

It's been a bit of a tough few days, so I haven't really been on here to update!

Nothing serious has happened at all, but I am in quite a bit of pain from the surgery in several areas. The stoma site wound hurts a lot more than I imagined it would, particularly when I'm changing the dressing. I'm also getting cramps in the pouch, in my stomach/abdo muscles, and a LOT of butt burn. It's obviously early days and I'm sure all of these things are going to improve, but when they're all at once they're quite uncomfortable.

Although I don't have accidents when I sleep, for the past few nights I've woken up several times to use the loo, which has disrupted my sleep quite a bit. I'm sure this will also improve. I think I need to accept that late night snacking is not a good thing - at least not while it's such early days! I'm still currently going to the loo about 8-10 times a day, but this will no doubt decrease over the next few weeks and months. I've had no leaks or accidents though, and it's possible to hold off going to the toilet for up to half an hour or even a bit more if I need it.

However, it's now starting to dawn on me that I really no longer have the stoma bag - and it's actually such a liberating feeling. The other day I came out of the toilet and had a momentary panic that my bag was hanging out/not tucked into my leggings - then realising with a smile that I don't have to think about that anymore. At moments when I've had the most awful butt burn, I've had a second of longing for my stoma back - but no more than a second. I know that what I'm experiencing now will improve, and I'm really happy that I went through with the reversal.

I'm eating a mix of bland things - and I'm already gradually adding to my diet. I've now tried carrots, broccoli and soft-boiled cabbage, all of which down pretty easily. This was the platter of snacks I ate the other night - all went down a treat:

I'm currently resting most of the time and putting my feet up - I'm catching up on lots of daytime telly! I finished off the last of my Christmas shopping online today, which my dad is kindly going in to pick up for me. In the next few days I'm hoping to start some holiday reading for the next uni term - at least I can do that with my feet up.

On Monday I'll be giving my pouch its first 'outing' as me, my parents, my best mate and her parents are going round the corner to the pub for a meal. It's pretty much in sight of the house, so not exactly a monster milestone, but it's definitely a start somewhere.

J pouch day 3

I've been discharged and sent home today! :)

Last night, I dropped my phone down the toilet (it survived), accidentally ripped a cannula out of my hand as I pulled on my dressing gown and had a pretty bad nights sleep. I woke up in a pretty bad mood, but when I was told I'd be discharged today it definitely cheered me up!

As my bowel has started working, the surgeon decided I was well enough to go home today - finally got back at around 6pm. I've had an easy evening in front of the TV eating some tea and chilling out!

Back home!

My pouch is working pretty frequently - sometimes partially formed, sometimes liquid. There's still a lot of gas. I'm still quite bloated and my stomach is puffed up, which is pretty uncomfortable by apparently normal. In the past 24 hours, I'd say I'd gone to the toilet roughly 8-10 times, which sounds a lot but isn't as bad as I thought it would be!

Whenever I go, I have total control. I don't have to rush. I haven't had any accidents, not even sleeping. Although I do feel the need to go poop come on pretty quickly, I can hold it in when I need. For example, the hospital is 30 minutes drive away from home - I needed the toilet when I left, but decided to hold it in. I had no problem holding it all the way home!

I do have 'butt burn' pretty bad. This is because poo without a colon is very acidic - so my bum feels a bit like a ring of fire. I'm currently using Andrex wet wipes rather than loo roll, dabbing not wiping, and applying lots of Sudocrem/Bepanthen nappy rash cream afterwards, which is keeping the burn under control!

My scar is pretty neat, and it's sewn diagonally.

I do have some scar pain, and also pain from the bloating, but I'd actually say that the bloat is more bothering me right now. Under my ribcage feels really tight and sore. This is apparently normal but right now it's making me feel a bit miserable.

I'm eating small meals regularly, and sticking to bland things like white rice, crumpets and cheese, white bread sandwiches. I'm not going to try to add to my diet until the bloating has settled down. I'm still taking paracetamol and oxycodone when required.

It's definitely nice to be back in my own bed tonight!!

J pouch day 2

Today is the second day with my connected J-pouch. It's already been pretty exciting as at 4.30 am this morning I had my first 'poop' from down below in nearly 2 years (oh, the simple pleasures!)

I've been a few more times since - it's very liquid now, but I have total control and no leakage. This is pretty normal in these very early days.

At the moment I'm really quite bloated, but that's largely cause of the morphine pump I'm on. I really don't like morphine - it makes me dizzy and sick, and yesterday had me projectile vomiting. I should be changing onto oxycodone/contin sometime today, which I tolerate much better!

One full night and day of morphine

The stoma site hurts more than expected, but I guess it's quite a deep wound after all! At the moment it's covered just with one dressing - I haven't actually seen the wound yet cause it hasn't been changed. From what's been said, I think it's been left slightly open - they have to do this in case it gets infected (quite a high chance where a stoma has been reversed)

I've been on a few drips overnight as I'm quite dehydrated from the anaesthetic, but this morning my blood pressure is back up from a low! I'm really starving and pretty much having to limit myself from going overboard and eating too  much too soon.

Here's my finished tum - op 1 scar down the middle, op 2 with the little keyhole scar above the dressing (and another below), and op 3! My stomachs still pretty puffy with air from the surgery/bowels waking up.

Today I'm hoping to eat a little more and for the bowels to properly get working - I may even be home within the next few days!

J-pouch day one: My journey to here

It's official!

After 2 years and 3 surgeries, I've had my stoma reversed and have no symptoms of Ulcerative Colitis left in my body!

15th December actually marks 2 years EXACTLY to when I was first diagnosed with UC back in 2013. I was admitted to this same hospital on the night of 15th December, suffering with horrible symptoms of a then-unknown illness that I'd hidden from friends and family for 8 months out of embarrassment. Despite bleeding and having diarrhoea up to 20 times per day, going off to uni meant I'd (crazily) hidden my symptoms from everybody under some seriously naive belief that this was something 'minor' that would 'get better'. Looking back, I had led myself dangerously into denial. 

By the time my parents took me into A&E, I weighed just over 6st, was severely dehydrated, deficient in 4 minerals and with a HB score of 6. I was diagnosed with Ulcerative Colitis (pan colitis) via flexi sigmoidoscopy. Over the next two weeks, my lovely gastroenterologist battled to save my colon with prednisolone, then Ciclosporine. When both of these failed and I had a huge bleed on New Year's Day 2014, I had an emergency open surgery to create an ileostomy and remove 90% of my large bowel (not the rectum, which they left).

I spent time in the high dependency unit, and it took me nearly 6 months to fully recover. During this time, I had to drop out of university.

In hospital before op1

After op1

Once I'd finally recovered, I restarted university in September 2014. During that time, I decided I didn't want my stoma to be permanent and looked into J pouches. If you have UC, making a 'pouch' out of your small bowel can be an option, and it seemed something I'd be interested in.

To avoid taking more time off uni, I waited until the next summer holidays (9th June 2015) to have the next surgery, which involved removing my final piece of diseased rectum, making a pouch, and making a loop stoma. This was done via keyhole surgery. Between ops 1 and 2, I still had bleeding and urgency from the UC in my rectal 'stump' that I treated with enemas.

The second surgery seemed to go well at first, but 6 days post-op I suffered a life-threatening haemorrhage requiring several blood transfusions when an inner stitch split. I'll be honest and say that this was one of the scariest experiences of my life. At the time, I didn't care if I ended up with a permanent stoma (as they thought may have to be the case at one point) as long as I pulled through. Fortunately, this rare complication only happens in 2/100 people having surgery - but UNfortunately I happened to be one of them!

On the MASSIVE plus side though, once you have your rectum removed, you are technically 'cured' of Ulcerative Colitis as none of the disease remains in your body. This was one huge milestone, and really marked a new chapter in feeling properly better (than I had in years). Even when I had the diseased rectum between ops 1-2, the regular flares would make me unwell - it was a real relief to see them finally go.

Coming out of op2 looking well

7 days later, when it all got a bit scary

After recovering over summer, I went back to second year of uni this September. In August, I had a barium pouch enema ('pouchogram') to check that the pouch had no holes - it didn't!!

So that leads me to here - nearly 2 years later, having had my stoma reversed and pouch connected! It's been an absolutely momentous journey, full of ups and down (but mainly ups!) and I'm really optimistic for the future!

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So far, there's very little to report on pouch life. I woke up with quite a bit of pain in the stoma site and I'm currently on a morphine PCA. All the surgery was done via the stoma site, which is currently packed and dressed. I feel a lot, LOT better on day 1 than after the 2 previous ops and I've been up and about walking to the toilet for a wee!

I woke up already starving hungry so have munched steadily on bland stuff all day. I've had lots of gas coming through the pouch (including a champion minute-long fart!) but nothing else so far. I don't have a catheter in this time, and the waterworks all seem to be normal (if a little slow earlier today).

Right now I haven't needed the PCA since late this afternoon, and should be off it/onto oral meds tomorrow. It also made me pretty confused this morning, which I really don't like about morphine, even if it works great for pain.

I'm pretty tired now, so I'll update more tomorrow and give more thoughts then :) For now, it's my first night in a long time that I won't be waking up to check whether my bag is full - although I probably still will, out of habit! 

Takedown tomorrow!

After nearly 2 years, what will be 3 operations and countless memories in between...

This time tomorrow I will be bag free!

Thank you to everyone who has supported me throughout my journey at This Girls Got Guts. Tomorrow will mark an exciting new chapter in life that I can't wait to start.

I've been drinking my pre-op carbohydrate drinks, and came back from London on the train today. After a lovely meal this evening with family, I'm laid chilled out with the TV winding down for an early start tomorrow.

The past 2 years have been full of happy memories - and there's been nothing I can't do with my stoma. Although I'll be glad to wave it goodbye, I'm safe in the knowledge that if for any reason I ever needed one again, life still doesn't need to have any limits.

Right now, I'm trying to keep an open mind regarding J pouch function - I know the beginning might be tricky. But I'm ready to take on whatever I'm given.

Fingers crossed for the next few days!

3 days until takedown: A total bag of nerves

This takedown has been coming for about 2 years now - so you think I'd be prepared and raring to go. I'd always envisaged that I'd be updating my blog regularly the week before, posting loads of updates, and feeling really excited about finally losing my stoma bag. But right now, I couldn't be feeling more different.

I've been absolutely consumed with anxiety the past few days - over surgery, possible complications, and the prospect of having a working J pouch. After my last surgery, when I suffered the huge bleed, I'm pretty terrified of going back under the knife. I'm worried for the pain, the recovery time and whether I'll be well enough to get back to uni in January, and what it'll be like to not have a stoma.

At the moment my anxiety is affecting my sleep, my appetite and my general health. I feel breathless, sick with hunger but sick when I eat, shaky and unable to get a good night's rest. I really didn't think I'd be like this, and I wish I could snap out of it somehow.

I know that I've wanted this reversal for a long time. And any time I freak out, I remind myself that I've come this far - this is the smallest of the three, and there's less chance of complications.

I'm going to Devon for the weekend to see family and take my mind off what's ahead. I'll be back on Monday, psyched up, ready to go and ready to write about this step by step.

Thank you for all your continual support!

My last ever order of stoma supplies - and tips on ordering your own!

Note: In this post I'll be covering the UK system of ordering stoma supplies. I'm not sure how it works elsewhere - my apologies!

Today, what will be my last order of stoma supplies (hopefully ever) has just been posted out to me. It's a bit of a landmark. To say I've been ordering these things, month in, month out, for 2 years now, it's going to be weird not to have to do it anymore!

Ordering stoma supplies has not always been trouble free. I'd actually say it's one of the biggest inconveniences of having a stoma. Over the past few years I've had my fair share of 'last minute' moments - including forgetting to order on time, the GP not signing through my prescription, and once even a dash to A&E because I actually ran out altogether (yes, I felt pretty shame-faced on that day). So I've put together a whole list of tips and advice that you might find useful when ordering your own!

So - you've just woken up from your operation, and now you've got a new stoma to take care of. In hospital, you're provided with all the equipment you need in pretty much everlasting quantities, but what happens when you leave?

Coming home from hospital after surgery 1

When you've had stoma surgery, your hospital will assign you a stoma nurse. As well as teaching you how to change and deal with your new plumbing, he or she will also make arrangements for supplies to be delivered to you when you leave hospital. Your hospital will probably have a preferred 'brand' of stoma bags that they like to give to patients (more on brands in a moment), and that's the type of bag you'll wake up with. You'll get sent home with more bags the same as this.

Think of ostomy bags a bit like chocolate bars for a second (it's a stretch, I'll grant). Chocolate bars are made by lots of different companies: Nestle, Cadbury, Lindt etc.
Ostomy bags are much the same (unfortunately, that's pretty much where the similarities end, but never mind. Forget that weird comparison, it's late).

Lots of companies make their own 'brands' of bags. Just a few are: Coloplast, Pelican, Bullen, Convatec (and loads more). A bag's a bag, right? Well, you'd be wrong there. Bags from different companies can vary widely - in the material they're made of, their shape and their size.

You'll also get put in touch with a supplies delivery company, e.g. Charter Healthcare (the company I have always used). They don't actually make the bags, just deliver them. A company like Charter is usually able to deliver you bags from any brand that you choose.

I have always used Coloplast Sensura 1-pieces - they're brilliant!

Although you'll get sent home from hospital with one brand of bag, that doesn't mean you have to stick to it if you start having issues. Different brands cater for different ages, needs and body shapes. Now's your time to shop around. ALL of the major ostomy brands are willing to deliver samples to you absolutely FREE (yep, I said free) - just google their website and request samples (there's usually a form to fill out including type of stoma/address/op date). Try any bags you like. You've got this new stoma - you may as well treat it to some presents to welcome it into the world.

There's also a whole load of 'extras' out there to sample - you think of it, it probably exists somewhere. Paste and mouldable rings for extra security, one or two piece bags, little packets of gel that 'thicken' your output, special 'aloe vera' extender strips. Hell, there's even these cute little spray bottles that supposedly you spray into your bag and make it smell like peppermint and grapefruit. YES, these things do exist, and YES, I've sampled them.

If you actually like any of these items, you can add it to your monthly order. Stoma supplies, on average, are ordered once a month. A typical order (without any fancy extras) usually consists of:

- Stoma bags
- Adhesive remover spray
- Disposable bags
- Dry wipes
- Wet wipes

After this, extras can be added on if needed/desired.

As of late 2014, all stoma orders need to be signed off by a GP before the delivery company will send anything out. This is where it can get complicated, but this is how the system is MEANT to work:

1) You order the supplies you need for the month, 2 weeks in advance of when you will need them, either online or over the phone with your healthcare company. E.g. "Hello, I'd like to order 30 Coloplast medium sized bags, 2 bottles of adhesive remover etc"

2) Your job is now done! The healthcare company will fax your order through to your GP surgery.

3) The GP checks your order and signs it off. This can take up to 14 days. (after about 9 days, your healthcare company will start sending them casual reminders by fax) The surgery then faxes the signed prescription back to your healthcare company.

4) The healthcare company delivers the supplies to you by courier service.

If this works all to plan, you're good to go. However, some of the issues I've encountered over the years have been:
- You register with a new GP and because you're a new patient they forget to sign your prescription/don't register that this is something you need every month
- I've ordered less than 2 weeks in advance

To be fair, it's usually my fault and the latter. Saying that though, if you do make a mistake and forget to order, it is always worth ringing your healthcare company and pleading your case - more often than not, they are willing to send an emergency sample order to tide you over until the actual delivery comes through e.g. a couple of spare bags.

In the case of the first problem, I ordered well in advance, but the new GP I'd signed up to was actually really awful (I ended up transferring elsewhere) and just completely forgot to sign the prescription, despite multiple reminders both from me - getting gradually more tearful - and from Charter healthcare. (They also had this awful receptionist who used to shout out your personal medical details across the room - OH SO YOU USE A STOMA BAG DO YOU, WELL MY SON HAS A SKIN CONDITION AS WELL SO I UNDERSTAND EMBARRASSING DISEASES. In front of a queue of 7 people. No, really.)

Unfortunately, stoma supplies cannot be 'bought' from pharmacies - the only way to get them last minute is a visit to A&E, where you sit looking completely well and healthy and feeling pretty awkward.

To avoid this issue, make sure your new GP knows that this is an urgent thing. Write a letter. Phone call. Even make an appointment and talk it through in person.

So, how much is an 'acceptable' amount to order? In the first couple of months after your surgery, your GP will probably allow you to order more supplies/order more frequently, allowing for mistakes and changing your bag more regularly. After about 3 months, though, they'll expecting you to be ordering one lot per month, and a reasonable amount of supplies (so not excessive). If the GP thinks you're ordering too many things, they will knock things off your order (usually without telling you) before putting the prescription through.

Quite often, if they do this, you probably don't need whatever it is they've taken off - but if you're really worrying and you're adamant that it's something you need, the best place to go is back to your stoma nurse. Explain that your order is getting refused, and tell your nurse why you need that amount of that particular item. If you have a legitimate reason, then the stoma nurse is able to get in touch with your GP, explain, and the prescription will most likely be accepted in future.

Don't worry about running out of bags. Delivery companies deal with this sort of thing all the time, and can be really helpful in sorting out issues. If you're ever really desperate, they will not refuse to send you emergency stock. A good delivery company understands just how sensitive an issue supplies can be - and most of all, they want you to keep on using them!

They can also recommend new products to you. When I was having issues with my loop stoma, the advice I was given from my healthcare company was amazing - with small adjustments of wearing a belt/using paste not rings, my quality of life and comfort improved in huge bounds.

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.

50 days until reversal: My ostomy gave my my mojo back!

It's now 50 days until my J-pouch gets connected, which means no more ostomy (if all goes to plan, for the rest of my life). It only seems two minutes since I was posting '100 days', so time has really flown! 

I'm excited, of course. There's lots of little things I won't miss about my ostomy, such as the occasional random filling/ballooning, and having it there in the shower. But otherwise? It's going to be pretty weird without it. My stoma gave me my life back, and I didn't realise until I'd had my colon removed just how much  better that would make me feel. In other words - my ostomy gave me my life back, not took it away from me as I'd feared it would.

Getting my GROOVE on

When I'm well, I don't really update my blog much. That's usually because in times of wellness, when you're really feeling on form, you just don't think about being sick. For me, the best part of having my ileostomy has been this - I'm no longer feeling like rubbish 24/7, like I did in my 17-19 ages when I suffered symptoms of IBD.

I can go out with my friends, have loads of fun and not have to dash to find toilets all the time, feel exhausted or in pain like I did with UC. Most days, I just forget I have a bag down there at all!

These past few weekends have been a great example of that. Last weekend, I turned 21, had a lovely meal out with my friends and another with my mum and dad (we went up the Shard for a special meal - it was AMAZING)

Eating in the Shard

This weekend, I got the coach up to Manchester and spent the weekend with a lovely group of old friends going on two spectacular nights out (party party!)

Some of the (many) Manchester snaps

This isn't counting a full week of university, working every day of the week and more assignments in between.

Doing a weekend like this just would NOT have been possible with Ulcerative colitis. Going back to university would have been difficult, let alone getting involved in so much.

The day I had my colon removed and a stoma made felt like the worst day of my life. Only now, nearly 2 years later, do I realise that it was one of the best. I'm now cured of UC. Whatever else happens, I will not have to go through that anymore. Life can go on as normal.

And if you're facing a stoma bag that you really hate the idea of, and don't want? This is me now, 2 years later, partying away probably a bit too much and having an awesome time. Back on New Year's Day in 2014, I was crying and pleading with doctors that I did not want a stoma. I said I'd rather die than have a bag attached to me and carry it around everywhere. I felt disgusted by myself. I cried about it for what seems like months. I might have looked strong on the outside, but on the inside I felt so sad and insecure. I was conscious of the bag all the time. I didn't think I'd ever have confidence again.

Now I am absolutely loving life. Have been for a good while, actually. Life with a stoma can be brilliant. Once you've found the products that work for you, got well again and realised that no, you do NOT smell bad, life begins to resume normality. One day, you'll look back and realise you haven't thought about your ostomy once. That's when you realise you've cracked it.

Of course, if you're reading this facing surgery, you won't believe me now. I didn't believe the blogs I read then. They were full of happy smiling people, all saying how much better they felt for their stoma and how good life was, and all I could think was - 'They must be putting on a brave face - they've got a BAG, how can they ever be smiling about that?'

Now, if I could go back and tell my younger self anything, it would be this. Life is fun with an ostomy. Life can be wild and adventurous with an ostomy. Life can be spontaneous with an ostomy. And life can be just the way you planned it to be, with or without an ostomy. How you use the toilet does not dictate how you can live your life.

You can do this, 19 year old Ellie - your ileostomy will be the best thing that will ever happen to you.

21!

I haven't had the chance to update until now, but last Friday I turned 21!

It might sound like a really cliche thing to say, but there's been a couple of moments in the past 2 years where I didn't think I'd make it here. Coming close to death at a young age is something you don't really get your head round. It sounds odd coming out of your mouth, as if you're exaggerating the details, or talking about someone else. It sounds like something out of a book. The fact is, that when I bled out before my first emergency surgery, or after my J-pouch operation this June, things were not always guaranteed to be okay. I'm sat here now and I've celebrated my 21st - but things could have turned out a lot differently.

Have these periods of serious illness taught me anything? I could give some big lengthy answer about how they've made me appreciate my life and the small things, but I wouldn't be being honest. Life has gone on as normal. I still cry over stupid things that don't matter. I still get wound up over friendship dramas, boyfriend dramas, any other sort of drama. I still go out and drink alcohol, stay out late and don't eat as well as I should. Is this advisable? Probably not, but I'm not prepared to act differently to my friends if I can help it. I want my life to be as close to normal as possible, without IBD hanging over my head.

I was only just 19 when I was first diagnosed, and had my colectomy 2 weeks later. All of that time, I spent in hospital. At the time I felt like a child - terrified of what was happening, feeling hopeless, and wondering how on earth life would go on with a stoma. Now my stoma has seen me past my 21st birthday, and in these past two years I've grown up very quickly. IBD does that to you, in a way. All of a sudden I've spent these years handling stuff that means I've had to take an adult attitude. I'm miles more mature now than when I first walked into that A&E door for my diagnosis.

My ileostomy reversal this December will mark a new chapter in my life. For now, I'm grateful, excited and happy all at once to have got this far. Toasting my birthday felt more like toasting my future. I'm ready to see what else it holds.