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.

Why you should never judge someone's weight with IBD

In the past couple of years particularly, I often find myself in the face of a recurring question: "Wow, how do you stay so skinny?"

It's something that comes up time and time again, like some annoying stuck record.

Of course, there are some people out there who will immediately think I'm being stupid for even writing this. "It's a complement, isn't it?", they all cry, "I wish I could be as skinny as you are! Why are you complaining?"

The thing is, my extremely slender frame and very pale complexion are not something I feel particularly proud about. Being 'this thin' does not always lead to complements - in fact, more often, it leads to criticism from people who barely even know me.

Nearly 2 years ago, I became so sick with Ulcerative Colitis that I lost over two stones, my weight plummeting to just over 6st. I remember stepping out of the shower a week or two after surgery and staring at myself in the full length mirror. I was unrecognisable. Ribes sticking out, black rings under my eyes, a fat puffy face from steroids. Any cleavage had completely vanished, with a huge surgical scar still raw from my ribs to bikini line, and a new stoma bag on. Looking at myself at that moment, I was a skeleton.

Over the next year, I did manage to put on a lot of my weight - the steroid hunger helped a lot - and I eventually made it back to around 8 stones. Then, my weight just stopped. At that point. And to this day, no matter how much I eat, or how unhealthy it is, or how little exercise I do, I don't put on an ounce more. Sometimes I even lose more.

Still with a bit of a moon-face after op 1

Since that moment, I've been in a lot of situations where my weight gets criticised. People see young girl, trying to be trendy - oh, she must be starving herself. When it's peers, it's annoying but excusable - but when it's medical professionals too, it really takes the biscuit. I signed up at my university GP and went for a 'new patient health check' only for the nurse to immediately tell me, 'you're too thin, you need to eat more' with the look of a condescending grandma on her face. You have my medical notes IN FRONT OF YOU. BOWEL DISEASE. PLEASE READ THEM.

Or when in hospital, a week before the first emergency surgery, when the man taking orders tried to offer me multiple items from the normal fibre content menu (despite me being on a non-fibre diet at this point) and my refusal being met with, 'you really should eat more, you know. It's not good to starve yourself'.

Last year, I went to play the piano at a family wedding. One of the guests got chatting to me, and she came out with it, "you're so skinny! How do you stay like that?" "Well, I have IBD..." "Oooh, I wish I had a bit of IBD!" Really? Really. Hmm, maybe I wish you did, too, for a day, before you make that sort of judgement.

For a long while after my last surgery, I was also anaemic. It gave me a pretty pallid complexion. I particularly didn't like this, so wasn't that amused when a man actually asked me, 'are you afraid of the sun?' I smiled and fake-laughed at this quip of insensitive humour, silently screaming in my head, 'no, but I'm afraid of IBD and emergency surgery, you silly man!' (or words to that effect)

It also goes the other way. Lots of UC and Crohn's sufferers have to take steroids in order to keep their conditions under control - a really nasty set of drugs that among lots of other side effects (excessive hair growth, insomnia and, when you do sleep, hallucinatory dreams - yay!) make you gain weight, particularly in the facial area. A direct side effect of steroids is 'Cushing's syndrome', where the face takes on a rounded, 'moon' like appearance due to water retention (often dubbed 'the moon face').

Steroids also make you exceedingly hungry. No, I mean, like you have to eat right now, or you're going to starve. No, that eighth meal of the day really isn't enough. Feed me more please. If you don't eat something, your stomach actually hurts. This isn't some psychological symptom you can ignore. The hunger is oh-so real, and needs satisfying. Again. And again. Seriously, night-time fridge raids became a serious thing. Which yeah, can make you gain weight. Deal with it, judgemental people.

Added to which, typically 'unhealthy' food is sometimes the only thing that will settle an IBD stomach. You might not believe me when I tell you that since my stoma operation I got told to eat white bread not brown, drink lucozade sport and eat salty crisps to keep me hydrated, and to add salt to my food. It's a complete flip-over of what we're ever told about our health. The amount of raised eyebrows I get when asking for salt at a meal - even after discreetly explaining that it's a medical issue - is often met with a laugh, or a 'yeah right' if I'm with the wrong people.

So if a person with IBD is in the middle of a flare and the only thing that is going to fill them up at that moment is a bowl of chips, then LET them eat their flippin' bowl of chips. Don't tell them they're not helping themselves, or somehow 'making their disease worse'. That green leafy salad will probably cause a truck load of more problems. Our society is so full of assumptions and judgements based on appearance, or people feeling the need to comment on others without knowing anything that person has been through. If someone's fat, thin, or anything in between, what gives you the right to say anything at all?

The automatic assumption that I'm a young female, so I must have an eating disorder, is tiresome. Ideally, I wish I weighed more than I do. Not a whole load, just an extra half stone would be fantastic. Legs that look a bit less stick-like, or wrists that don't look like they're about to snap. The thing is, it's not just an appearance thing. I get tired a lot more quickly than I used to before surgery. I'm constantly feeling dehydrated, no matter how much I drink, and on some occasions my stoma transit is so quick that my food comes back out whole. I doubt much nutrients have been absorbed there.

On a final note, having IBD is already a battle. Constantly planning your life around your health, whether than be medication or using a stoma bag, worrying about flares or not making it to the toilet, is enough of a stress without your nearest and dearest (or complete strangers) judging you on your weight. Nobody chooses to have IBD, or the effects that come with it.

So, back to your question, "why are you so skinny?" It's called the incurable bowel disease diet, followed by the save-my-upset-stomach meal plan, with a touch of the have-your-whole-colon removed exercise regime. Really effective, by the way - why not try it for yourself!

5 memories of my ostomy

As my stoma's got very little time left with this world (just under 10 weeks, to be precise), I thought I'd share some of my most memorable moments of bag-life that I've had over the past 2 years. I first had a stoma at 19, and I'll be 21 in a couple of weeks, so it's been a pretty large chunk of my life. A lot's happened in these years - I've left home, gone to university, been abroad to places I'd never seen before, been to my first music festival - all with bag in tow. Whilst there's certainly been some challenges, these years have been some of the best of my life, and Ulcerative Colitis has done nothing to change that.

So here's my top 5 most memorable moments: the good, the bad and the ugly!

#5: My most awkward moment with a stoma

I was waiting to get a coach down to visit a friend, and really needed the bathroom before we pulled away. There was a proper toilet block about five minutes walk away, but I didn't really have time to go that far, so had no option but to use the one-room, pay-20p-for-a-timed-slot toilet that was in the bus station.
My bag was pretty brimming by this stage, so let's just say, there was a lot to empty out. After I'd finished up, I realised that there was no 'flush' button beside the toilet, but instead a little notice that said, 'this toilet will flush automatically 20 seconds after you exit the cubicle'. It was a little odd, but I figured the loo would do its business and opened the door to leave.
Turns out another lady had been waiting right outside the door, absolutely bursting for the loo, and dashed in after me before the '20 second' period was up. The loo hadn't flushed. I looked back and in the five seconds before the door closed I caught her open-mouthed expression of disgust, shock and sheer amazement that one person could possibly produce THAT quantity of poop in one sitting!

#4: My worst moment with a stoma

My lowest moment with a stoma had to be right after operation 2 (J-pouch creation and loop stoma). Although it was a planned surgery, things went pretty badly as I suffered a massive bleed-out 6 days post-op and it had really knocked me for six. Because I'd already had an end ileostomy for nearly 17 months at this point, I figured the loop ileostomy would be easy, but I was wrong on that one too. The two stomas require extremely different care and technique.

I left hospital with all the equipment I thought I needed, only to have a leak pretty much as I was walking out of the ward. Thinking this was an unlucky moment, I changed and got into the car to go home. Getting back, I felt the stinging again - another leak! I changed it a third time, my skin feeling pretty painful by this stage, checking I was doing everything right. It seemed fine at first. Then 20 minutes later, it happened again.

It turns out that just that day, my stoma had retracted more into the skin, meaning I actually needed convex bags - but I hadn't realised that at this point, so was just using ones with regular flat flanges. Over the course of 6 hours that evening, I changed the bag a whopping NINE times. NINE. By the end of this, my skin was literally raw, and my spirits felt really broken. I remember just sitting in the bath without a bag on for half an hour, not caring anymore, just crying.

By some amazing stroke of luck, we actually had some convex bags in the house that had been given to me by a neighbour after his wife had died of colon cancer. He'd just wanted them out of the house, as the sight of them hurt too much. I remembered reading online about convex bags, and the moment I tried one, it was perfect. No more leaks. Comfort and rest at last. In an odd way and in my exhausted mindset it felt like my neighbour's wife was up there somewhere looking out for me - without using her bags, I don't know how I would have made it through the night.

#3: My weirdest moment with a stoma

I was on a night out with some old friends I hadn't seen for a while, some time in between surgeries 1 and 2. We were all dancing away, having a great time. One of the girls, who I hadn't spoken to in absolutely ages, was pretty drunk. We all went to the toilets as a group (as girls do) and as there was a huge queue, this girl and I went in a cubicle together - I only needed to pee, anyway!

I was in the middle of it and she was turning the other way, when all of a sudden she asks me, 'Can I see your bag?' I was kind of caught off hand, and I actually said no, because although I'm fine and comfortable with my stoma, I didn't exactly want to 'whip it out' on cue. She knew I'd had surgery, but we hadn't actually had a proper conversation about it, which was what made it weirder. As we were locked in this tiny cubicle together she proceeds to ask some really weird and quite personal questions - 'how does it feel not to poop?' 'like, how big is your bag?' By this stage I really wasn't in the mood for these quickfire questions and just wanted to get out of the cubicle and get on with the night.

And then came the oddest comment I think I've ever heard, which may sound quite nasty on here but it wasn't really - more just really-drunk-no-filter - 'Don't ever feel embarrassed about it, I have accidents in public sometimes as well!' I just had to laugh, really. The sober side of me felt like snapping back 'I do not have accidents in public - wearing my bag doesn't mean I'm having accidents' but as I was tipsy and she was really out of it I kind of nervously laughed it out... She didn't remember the conversation the next day anyway, and was dying of embarrassment when I reminded her.

#2: My proudest moment with a stoma

The hospital I'm with tries to do a lot in the way of counselling patients with stomas - they run monthly support groups, informative talks and even have patient 'text-pals' where (with your permission) they share your mobile number with future patients struggling to come to terms with their stomas. When I had my stoma first made, I got a 'text pal' who was a similar age to me, and she was unbelievably helpful. It was her that first inspired me to start talking to others about the surgery - if just chatting to her had been so therapeutic and reassuring, then I wanted to help others in the same way.

I've actually met some amazing friends through this service. The 'text pals' idea can be a very powerful thing. Sometimes, after a stoma operation, you need someone to tell you the little things that a doctor can't. Like what to wear, the best accessories, whether swimming is possible - all the trivial yet important stuff that might be on your mind.

So about a year and a half after my own surgery, the hospital started handing out my number to new patients who'd just had stomas. They were around the same age as me, and often we had very similar stories to tell. One time, me and another girl chatted for ages and ages and I think by the end of it I'd covered everything from clothes to swimwear to music gigs. She went ahead to have a successful surgery. When I had operation 2 and was updating Facebook regularly, I got a lovely message through from this girl saying she hoped I was well - but also she wanted me to know just how much better and more confident I'd made her feel just by having that chat. Before, she'd been really worried about having the op, but our conversation was the first thing that made her realise how normal life can still be with a bag.

The knowledge that I've helped just one person come to terms with this surgery is amazing. Through my blogging and anything else I do online, I hope I can boost others' confidence and lift their hopes up.

#1: My when-the-impossible-was-possible moment with a stoma

There's actually been a lot of these, and the best thing is, even small achievements can make you feel phenomenal. From going swimming for the first time, to wearing that straight skirt, to eating the 'banned' mushrooms - lots of things that at first seem 'impossible' with a stoma can actually be extremely do-able.

I think my most impossible/possible moment with a bag was when I spent 4 days hiking through the Brecon Beacons supervising a DofE Gold team. Out in the Brecons, there were no proper bathrooms (sometimes not even proper toilets!), and I very nearly didn't do it out of fear that I'd face some issue. How would I change my bag? Or empty it in the wild? What about getting up at night and trekking over to the toilet block in the dark? Sharing tents with other people? So many things seemed capable of going wrong, I very nearly backed out of the whole thing.

However, hiking and the outdoors has always been my passion. Before my diagnosis, I completed all three DofE awards, and even hiked up mountains in the Swiss Alps. I wasn't going to stop this stupid disease steal away one of my greatest loves.

So I took a deep breath, and... I did it. I changed my bag in a tent. Emptied it in a few bushes. Occasionally used leaves as loo paper. I made the trek across campsites in the dark to the toilet block or the 'loo spot'. Throughout the 4 days we hiked around 90km up and down mountains, carrying our equipment with us, cooking on the camp stove, and seeing some amazing scenery.

It might sound like some people's idea of hell, but I absolutely loved it, every minute of it, and wouldn't have changed a single bit. Using leaves as loo paper didn't matter when I was spending four days surrounded by scenery I adored and doing something I never thought I'd be able to do again.


These past two years have certainly been eventful, and I won't forget them in a hurry. Having a stoma has both challenged and inspired me, frustrated me and made me thankful, been one of the hardest things I've ever done but also given me back the health I'd not had for years. In an odd way, I'll kind of miss my bag. My J-pouch is a new chapter in the story, and who knows what else it'll bring.

Ostomates - love yourself, you're FABULOUS!