Europe with an ostomy and IBD – first trip abroad after surgery


We made it! After nine days, millions of bowls of pasta, slices of pizza and mountains of dripping gelato later we are finally home from our exciting and action packed mini tour of Italy.

Well I say mini. During those nine days we visited a Venice, Florence, Pisa, and last but by no means least, Rome. Oh and a few small islands surrounding Venice along

About a stone heavier - poor ostomy coped with a lot of carbs

About a stone heavier – poor ostomy coped with a lot of carbs

the way. So perhaps not that miniature at all really! Ok, so I know they are all extremely magical and special destinations, filled with romance, glamour and fancy hotels, but the experience was really quite rustic and back to basics for me and my boyfriend Andy. We organised the trip off our own backs, joined the students on cheap trains and travelled cross country with our suitcases across miles of rolling countryside, vineyards and quaint cottages before lugging our bags to the next hotel or apartment. It was the closest I have ever come to a backpacking holiday, and made me realise all the fun that I would have had doing backpacking around Europe or Australia during an unrealised gap year – something I never even really let myself dream about because of the never ending ugly rearing head of my Crohn’s/Colitis.

So besides my extreamly sore legs, deep muscle fatigue and bulging blisters on my big toes (my fault for wearing silly shoes to traipse around the whole of Italy) I feel extremely happy. Ok, at the moment I am just happy to be home and in my own bed and having my own personal things around me. The biggest relief is coming home to somewhere where my ostomy supplies are all organised and to hand. Thankfully I packed far more supplies for the trip that I needed, but after a couple of leaks and mishaps, which I think were exasperated by the heat and the exertion I put on my body walking so many miles, I was almost down to my last few bags as we boarded the plane back to Manchester. It was a close call. Especially for my fistula which appears to have herniated and gone a weird blacky green colour… a little worrying…it caused me a world of problems and an extraordinary amount of pain, which at times left me doubled over and hobbling down the street hunched up in agony like an old lady. As nice as it was to be exploring, to be in the sunshine, to see extraordinary places, it is so nice to know that I can visit my stoma nurse if I need to and get more supplies by just calling my delivery company. It’s also so nice to be able to get to free toilets…something that proved to be problematic in Italy – I absolutely refused to pay a euro 50 cents to empty my ostomy bag.

Boiling heat in the sunshine at the coliseum

Boiling heat in the sunshine at the coliseum

I’m sorry I didn’t post as I travelled. Both me and Andy made a rookie mistake and didn’t update EE (formerly Orange) of our trip, meaning that when we arrived in Italy neither of us could contact anyone. Meaning we were stranded in a strange city with no way of contacting our families, friends or anyone, least of all the people we were renting the apartment from!! Nightmare! I did manage to get a little internet access eventually, but only for short periods of time.

So as I don’t wont to write one post that’s 17,000 words about the trip I thought I would divide it up into a series of posts over the next few days. Sharing both the sites and experiences of the holiday and any tips and tricks for going away with IBD and an ostomy. Sharing the silly things that happened, what I would do if I went traveling again and also the things anyone should be aware of if flying, travelling, or even thinking about their first adventure abroad after being diagnosed with IBD or having their abdominal operation.

One thing is for sure, it was not as scary as I thought it would be. Life was a lot easier than before my operation. Yes I had a few close calls, and a lot of panics about the lack of free public toilets, but most of this was due to the constant flaring of my Crohn’s/Colitis in my remaining large bowel, which made my fistula extremely unmanageable. But compared to before it was a walk in the park. I got to enjoy everything for the first time without really worrying. Ok, to say I didn’t always look for the toilet constantly, and I didn’t have a few hairy moments along the way would be a downright lie, but I didn’t spend the majority of the trip staring at the back of a toilet cubicle was quite frankly a miracle.

The most magical experience of my life - the gondola

The most magical experience of my life – the gondola

So I hope you enjoy the pictures and ramblings about me Andy and Winnie’s Italian adventure. And I hope you will share your experiences of your first trip post surgery for others to enjoy and gain tips from too.

Advertisements

A very problematic fistula


After a couple of days of really bad pain, tenderness and a few pretty disgusting leaks, I

OUCH!!! My mucus fistula looking very angry without its bag on

OUCH!!! My mucus fistula looking very angry without its bag on

finally gave in yesterday and rang the stoma nurse about my fistula. I guess I just couldn’t take it anymore. The trigger was when I went to the toilet at work and I noticed that the blood had come back…it took everything for me not to just breakdown there and then.

So according to the registrar, a very bemused looking doctor the stoma nurse dragged kicking a screaming into the clinic to look at my very temperamental fistula, I am “on the verge of something big”! Sounds exciting right? Well what he meant is that the horrific symptoms are starting to return, only this time as I only have a tiny bit of colon the agonising and crippling pain from before is more like a dull throb and twinges like someone is pulling at my bowel with a pair of tweezers. He means that I am in all probability on the very edge of a major flare of my Crohn’s/UC…and that it is time to nip it in the bud before it spirals out of control and I end up flat on my back squirming around in agony again.

This is all because they didn’t take my whole bowel out last time I was on the operating table. There are a lot of reasons for this, none of which i can really explain, but the long and short of it is that I have a mucus fistula, and that combined with my remaining colon (still full of Crohn’s/colitis) is what could send me hurtling back into my illness again…all this would have been solved if he had just whipped it all out at once..typical man!

My mucus fistula formed after my supposedly ‘perfectly healing scar’ exploded one night on the hospital ward sending what appeared to be the entire contents of my stomach pouring onto the floor. I have been through a lot of scary stuff in my life due to my illness, but I have to say that my stomach tearing open has to be one of the most horrifying moments so far – I would put it up there with the first time I blacked out and hit my head against a sink as the entire contents of my body appeared to drop into the bottom of the toilet one afternoon. I remember just standing in the bathroom screaming as this luke warm brown liquid cascaded from my stomach, reaching out in shock to press the emergency call button, screaming my stomach is falling out in a wild panic while the nurses swarmed around me trying to calm me town, telling me ‘it’s perfectly normal dear, you’ll be ok’….in what world is your stomach splitting open normal??? Oh yes, in the world of IBD and abdominal surgery, that’s right!

Anyway, since my surgery I have had a few hiccups with my hole in my stomach. It’s no bigger than a thumb print, but boy can it cause havoc when it wants to. According to my surgeon it formed when the stitches holding my remaining rectal stump (the remaining bit of colon they left in when they removed the majority of my large bowel) came undone and, not wanting to feel left out, the remaining bowel squirmed its way to the surface so it could form another stoma. I like to think of it as my second stoma, and although it is a pain and not a pretty sight if it hadn’t burst through the surface, like a little worm peeking out of the soil, the mucus in my bowel would have discharge into my body causing a world of problems and making me incredibly ill.

So I guess it’s the lesser of two evils.

But I hate my mucus fistula. Having it means I have a second stoma bag. Ok, its only a baby sized one, but I really didn’t sign up for having two bags, one has been hard enough to accept. I have embraced Winnie, and, although I wouldn’t say I love her, I’m never disgusted or angry about having my ileostomy. Winnie is simply part of me and without her I would still be incredibly ill and in a heck of a lot of pain. But no one ever warned me that I might end up with two bags, and, and this has been the hardest thing to stomach, that I could have to put up with it for the rest of my life if I don’t have a second lot of surgery.

Anyway I’m stuck with it for another six months when I will finally be fully colonless. For now I’m putting up with my mucus fistula, the only problem is it’s not making life easy. Over the last few weeks all the side effects that seemed to miraculous vanish the morning after the operation have started to slowly return, and my fistula has started generating more and more mucus filling the little bag in record time and causing some rather horrific leaks that have ruined more than a couple of pairs of my favourite PJs. The stuff it generates is pretty horrible, its like a sicky brown colour, I suppose a bit like baby puke…NICE! And the smell, urgh, it’s so pungent. The worse thing is it comes out both ends, which is something very surprising when you’ve had your bowel removed, it may sound silly but you would think you wouldn’t be able to poop anymore, but this stuff just won’t stay in, there’s no control, it just kinda floods out.

The worse thing is the pain as the stuff shoots out of the tiny hole in my fistula. It literally spits it and the pain, if I happen to be walking, stops me in my tracks. It feels like I’ve been kicked in the stomach and leaves me breathless. It also incredibly tender and even if the ID card I wear at word lightly touches it I want to scream in frustration…seat belts are an especially horrible experience. But compared to before it is like a minor headache, like a tiny mosquito bite when an elephant is bouncing on your stomach, I can cope with it, but not if it means getting ill again.

I refuse to get ill again…I’ve been ill for as long as I can remember, and for the first time in my life I was starting to get used to not waking up and going to bed in pain. That can’t return, and even though that means I’m going to have to spend the next 6 months shooting all sorts of things up my sore backside I’ll do it if it means I never have to feel that pain again.

 

Climbing 275 steps – one giant leap on my road to recovery


I’m in a fair bit of pain as I write this. I can’t quite described what’s going on, or

A giant leap for Winnie

A giant leap for Winnie

comprehend what the problem is, all I know is that it is something to do with my fistula and that it is nothing like I have ever felt before. I’m not quite sure why it’s happening, or what’s happening, but I’m not feeling great. I’ll talk more about it tomorrow, but I thought I would mention it now as I’m drugged up to my eyeballs, so please forgive me if this post reads a bit like a druggie’s random train of thoughts…that would be the tramadol talking!

Ok, so it’s no Mount Everest but on Saturday I climbed 275 very steep and winding steps to the top of York Minster tower. Why? Because it is part of the 101 Visit England places to visit before you die…and because I have never done it. Over the years I have had the pleasure and honour of playing in the Minster a handful of times with a brass band I was a member of (have I failed to mention I am a band geek 🙂 yes I play the euphonium..an instrument which is about ten times to big for me and makes me look like a small child playing a giant’s trumpet), during an annual charity carol concert. Playing in the Minster was always an overwhelming and truly awe-inspiring moment; the music swells up into the rafters, filling every nook and cranny of the enormous building, rising up into the heaven’s, creating an ambience that seems to vibrate around your very soul. Something about hearing a brass band perform in a church is so humbling, and the sound, the pure, stripped-back sound of a single note echoing through the pews would send shivers through the soul’s of even the most cold-hearted person in the world. It’s times like these that I feel the most alive.

At the start, before I ran out of puff!

At the start, before I ran out of puff!

Anyway, despite having performed in the Minster I have never walked up the Tower. So after weeks of umming and ahhing about making the trip to York me and Andy finally jumped in the car and braved the trip on Saturday. It wasn’t the nicest day, drizzly and overcast to say the least, but that wasn’t going to stop us. I have to admit that this is one of the things I love about this blog and my 101 challenges, that I can’t just say ‘oh I can’t be bothered’ anymore, or ‘I feel to ill’..if we’d sacked the trip off on Saturday just because of a little bit of rain I would have felt that I’d not only let myself down but I would have let down you guys, and the rest of the IBD and ostomy community…ok, that might be a bit over the top but that’s how I feel, and it drives me to keep going even when I just feel like poo!

And that is the reason why me and Andy paid £15 each to get into the Minster and climb the tower. I know £15 EACH!! If it hadn’t been for the fact that I had to do it for my challenges I would have down right refused to go in, I would have turned around and walked out just for the shear principle that I will not pay that much to go into a place of worship. I mean I have travelled to some incredible places and seen some incredible churches including Notre Dame and the Sistine Chapel and I honestly don’t think I have ever paid that much to go into a church before…I know that it costs a lot to upkeep a church of that size, but seriously that is a disgusting amount of money to just walk around a building and climb a tower, which, I hasten to add was covered in graffiti the whole way up (how people have time to etch their names into stone while being herded up those steps really boggles my mind, they must take chisels and hammers!)

Anyway the walk up was horrific. Yes, I know that it has been months since my

At the top - upset about the netting, ruined the view

At the top – upset about the netting, ruined the view

ileostomy op but I am still not as fit as I was before my surgery, and the whole situation was made worse by the fact that there were around 50 other people staggering up the steps, so there was no time to pause and catch your breath. Seeing as I have a slight fear of confined spaces – I know it’s neurotic but I’m one of those people who burst out of a lift when it opens like its been on fire – it wasn’t an ideal scenario. I spent the whole climb up clinging to the railing and listening to the family in front rabbiting on and on at each other – I got the impression that someone was in big trouble! Winnie (my ostomy) was not having the best of days, but managed to stay calm enough not to have a leak as I tried to heave my tired legs up the hundreds of steps, very much aware that if I had a dizzy spell the rest of the people behind me would fall down like dominos back into the Minster. It wasn’t my favourite experience, but when I reached the top, exhausted and with legs shaking like jelly, the views where beautiful, (if not ruined by the barbed wire netting all over the place no doubt to stop jumpers) and I felt a massive sense of achievement that I’d climbed all those steps – ok, so it’s not that big an achievement but when you take into account that months ago I couldn’t walk to the toilet and back without someone holding on to me, it really is a giant leap in the right direction.

The sense of achievement and relief was short-lived when I realised I had to walk all the way back down, which is always harder than going up, and was made worse by the fact my muscles seemed to have locked and were frozen in the walking upstairs position. But at the end of it I might have felt a little tired and dizzy and my legs might have felt like jelly, but I looked a down sight better than a lot of the people who came red-faced and sweating down the steps, puffing and panting like they’d run a marathon – and I guess they didn’t have the excuse that they’d had major surgery just a few months ago.

MMM CHOCOLATE

MMM CHOCOLATE

After completing the challenge me and Andy treated ourselves to a cup of hot chocolate at a nearby chocolate cafe. I’ve been to York a fair few times but until this weekend I had no idea that York was most famous for its chocolate heritage. It seems that York is the birthplace of KitKat and other delicious treats that I unfortunately haven’t had the pleasure of eating in years BOO! I was so excited as this was the first time I had been able to have a hot chocolate in public since I was diagnosed with being lactose intolerant around four-years-ago. This cafe did dark chocolate and the option to have soya or rice milk instead of the normal dairy milk. It was an unexpected treat, and very rich and yummy…but as per usual Andy’s drink looked far tastier than mine and I have to admit that spoiled it a bit for me as the green-eyed monster raised her ugly head, and I spent the majority of the time in the cafe wishing I could have a sneaky taste of his very scrumptous looking white hot chocolate! – sometimes I despise being lactose intolerant.

We finished off the day walking through the Shambles, which despite the drizzle was a very enjoyable experience, ending up in a vegan cafe for a cake, as I wanted to have a little treat, which was an underwhelming and pricey experience. The pudding was mediocre and I didn’t like the very hippy atmosphere of the place (nothing against it, just not my cup of tea), Andy really didn’t like his coconut paradise cake…not really sure who decided paradise was the right word to describe it, more like bouncy sludge?

I really am tiny!

I really am tiny!

Anyway soon after that we were forced to give up and go home as my remaining colon started kicking off and my fistula started to cause me problems. Luckily that was at the end of a very full day, so the timing wasn’t too bad, although I obviously would rather it didn’t kick off at all.

My verdict? York is a beautiful place with stunning heritage, shops and scenery. Don’t visit the Minster unless you really have to see it, it is definitely a once in a life time experience. The views from the tower are beautiful, but they are nothing compared to other tall buildings across the world such as The Eiffel Tower or the Empire State Building. But, although it was a lot of money, I don’t regret it. I feel like I have really achieved something in my road to recovery and in embracing my life with a stoma, and shown that you really can do anything and that having an ostomy shouldn’t stop you doing whatever the hell you want.

At the Minster

At the Minster

Oh, if you go reward yourself with a hot chocolate. You won’t regret it!