Let’s talk about poo…..and the strangeness of where it can appear from!!!


On Sunday something humiliating happened that left me wanting to crumble into a blithering wreck in the bathroom and never emerge again. Me and my ostomy bag have had our moments over the past 13 months, but this was something else, this was a full-scale blow out. I’ve had my fair share of leaks, explosions and inappropriate ‘stomach’ farts. I’ve had weirdly reformed sprouts, sweetcorn and peppers magically un-mush and re-solidify back to their pre-chew form and force their way out of my tiny stoma opening with a painful pop. But Sunday evening experience was something else, and I can’t quite work out how it happened.

Luckily we made it back from Lincoln (for one of my challenges) and I was in the flat, so close to a toilet and a shower, when the incident happened. I could smell something weird as I walked through the flat towards my bedroom to take a nap after the exhausting journey. It was an eggy smell. Sensing something was wrong I went to the bathroom to check and couldn’t believe the mess. I’ve had leaks before but this was something different. The whole front of the bag was seeped. It didn’t even leak out of the side, but seemed to come from the lining of the appliance. I wanted to cry but managed to hold myself together, remove my clothes (which were covered in it) and jump in the shower. This was the first time I showered with a naked stoma. I’m sure I would have found it liberating if the circumstances had been different.

Later curiosity got the better of me. I inspected the bag before disposing of it and it had a snip in the lining, clean and clear like a scissor snip. I guess I was overzealous while cutting my bags, something which has never happened before. Since then I’ve been paranoid. I’m constantly patting and prodding to check I’m not seeping out, which I’m sure must look odd to people chatting to me on the street. I’m glad I was in the flat when I noticed, I hate to think what I would have done covered in stools at work, in court, at a meeting….but I’ve coped with worse. 

As you probably realise most people don’t poo from their abdomens, for those who do it has its pros and cons….that moment was most definitely a con!  

 Over the years I’ve spent more time talking about my poo to random strangers, friends and family members than I’ve probably spent talking about anything in my life. I’ve described everything from how loose, mushy and sometimes rock hard my excrements can be, to how it turns green in my ostomy bag when my body is failing to absorb and the weird lumps which often look like undigested sweetcorn that pop out of my stoma and appear to breed and multiply in my bag (even though I don’t recall the last time I ate a single one of the bloody stubborn things). I’ve talked about the smells surrounding my poop and ticked off trillions of Bristol charts to see how perfect my stools would be on a scale of 1-10 of the poo of all poops – mine has never been the perfect 10, otherwise known as “God’s poo”. In fact I’ve got to the point where I feel like telling people about the state of my stools before I even tell them my name, and toyed with the idea of introducing myself with the greeting “type six, fluffy pieces with ragged edges – a mushy stool, with or without eggy smells and blood – often hard to pass” and shaking their hand while saying “oh and did I mention consumes vast amounts of toilet roll and hogs the bathroom”. 

When people ask you how you’re feeling what they really mean to say is “how is your poo?”. In one variant or another the question is never far behind. I’ve given more stool samples in my life than I dare to even comprehend, and I know some of them have been obnoxious. I’ve seen horrors at the bottom of that toilet bowel that I wish I could forget, and I’ve had moments where the sight of blood has left me clinging to the stall walls sobbing with grief and despair. But despite all the hangups about poo and the horrible things I’ve seen I can’t help but constantly look, monitor and check everything is ok down there. I guess it’s been ingrained in me, and as disgusting as it might be, the instinct has saved my life.

I guess the point I’m trying to make is having Ulcerative Colitis/ Crohn’s Disease has swallowed up my life in a way that has left me totally obsessed with the state of my poo. Even though I no longer have a colon I can’t help but inspect the stuff my body produces. It is a rather yucky habit which has become a way of life, drummed in me through absolute necessity and a constant monitoring process to make sure I catch the bastard flare-up in time. I’ve got so used to checking my poo in the toilet bowel for blood, mucus and other tell-tale signs that I can’t help myself, and now I can’t avoid looking as I have to empty an ostomy bag dozens of times a day, which can often be an enlightening experience into just what you shove in your gob that your body simply spits out whole at the other end.

I have to admit that I find my stoma fascinating. Ok I don’t go as far as sitting and watching it pulsing and moving around all day long, but when I have to change my bag (every day atm) I am mesmerised by the way it moves, pushes and pulls. It is a living organ and behaves just as any part of my bowel would in order to move matter through my body, but being able to see it on the outside of my body is both a (initially) strange and interesting experience. My stoma has a life of its own, and while not a pleasant experience it has a sort of beauty to the way it works, especially when it seems to reform and create food all on its own, like some sort of poo covered vending machine, popping out full mushrooms, onions and pieces of candy in sporadic bursts from its tiny pink hole.

Ok so I’m freaking you all out now. My employers and colleagues are probably reading this and thinking OH SH*T SHE’S TURNED INTO A WEIRD POOP PROBING FANATIC, and what’s even worse is she’s told the whole world about her weird fetish. Don’t worry guys I’m ok, I’m not obsessed.

I guess I find my stoma so fascinating because it has literally saved my life. I have minutes and hours of every day where my stoma and its weird function causes chaos, twinges of pain and farts in embarrassingly quiet situations, but I no longer have my whole universe falling out of my arse every five minutes. I suppose even a year on I’m still in awe of what the world of medicine has managed to achieve; the freedom this little pink lump on the outside of my body has granted me, and the joy it has brought back to my life.

Ok, so it isn’t always plain sailing. I’ve had explosions. Overdrive days. 3am wakeup calls with my bag at the edge of bursting. Millions of leaks at the worse possible moment. Rashes, allergic reactions and bags falling straight off my skin in the shower. I’ve cried and wanted to tear it off the side of my body, but mostly I’ve accepted life with a little pink pod on the outside of my body. Me and Winnie are attached in more ways than the obvious, she is my saviour, my partner and also at times my worst enemy.

But as they say “you should keep your friends close but you enemies closer”.

 

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Enhanced Recovery Programme – the NHS OLYMPICS – are patients being sent home too soon?


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I’m writing this from my hospital bed feeling pretty fed up and low. Last time I wrote my recovery from my operation was going unbelievably well – I guess what they say is true, “if something is too good to be true, it probably is.”

I was readmitted on Thursday morning after waking up the whole block of flats (well probably) at 5am screaming and crying out in pain. I hadn’t been feeling awesome for a few days, but I knew straight away I probably shouldn’t have been experiencing that much agony as part of the long healing process. But I really didn’t want to go back to hospital; I’d had a taste of freedom – well of the tiniest bit of fresh air and being in my own bed. My recovery had apparently been going in leaps and bounds and I simply didn’t want to give that all up and be back in my hospital bed cell.

Eventually my parents persuaded to get it checked out and I went tearfully to the hospital and reluctantly agreed to be admitted. And a good job I did. The pelvic pain was a collection of fluid which had gone septic. No wonder I was in agony. Now almost a week later I’m bored out of my brain, drained, exhausted and about to start climbing the walls of the ward, and can’t quite believe this is happening again after last year’s nightmarish post surgical mishaps.

But it really does raise a question about whether I was sent home too soon. From just hours after my surgery it felt like I was dragged out of bed, paraded around, led up and down stairs and faced with endless plates of mince and mash. The enhanced recovery programme seemed to be trying to train us all for some sort of NHS Olympics in less than a week. I went from having my stomach sliced open to climbing my own little mountain (well 20 steps) in a matter of days….if someone had told me that before the op I would have said there was more chance of an elephant flying to the moon.

Having had surgery before I was lucky (in a fashion) to know around about how much pain to expect. But really how do you know what is normal healing pain and what’s something going wrong? In the weeks after surgery infections are more common and problems are be likely to occur, so what are you meant to do if you don’t know – go to hospital like me or ignore it and hope it goes away (like I almost did). My excuse for considering ignoring it was not only that I couldn’t stand the idea of loosing my little island of freedom, but I simply thought I’d done too much – walked to far, strained myself etc – luckily my parents weren’t as sure or god knows what sort of a mess I’d be in now!

Being readmitted is a hard thing to come to terms with. I guess it’s like an on the run prisoner being bundled back into a cell after a few days in hiding. Whatever freedom and comfort you got from being at home, eating your own food, being surrounded by the people you love, watching your own TV, sleeping in your own bed, is cruelly snatched away from you. You’re flung back into the world of 24/7 bleeping machines, sleeping next to strangers, hospital food, stale air, needles, wires and tubes all over again – but this time with simply no idea when you might escape.

For a few of these days I’ve struggled to contain my tears. The staff (nurses, consultants and doctors) are lovely and kind but I just want to go home. I tasted freedom and it tasted good, but now I’m back with a drain hanging from my intimate parts which I have to carry around in the hope if draining all the badness out if me. I’m on antibiotics and I’m feeling better, but I may gain my health but loose my mind if I dint get out of here soon and get back to my small home cooked meals, comfy bed and hugs from my worried boyfriend.

But more than that I’m worried all this might happen again. If I’m discharged tomorrow how do they know I’m truly ready? On Monday my BP, temp, bloods were fine…I was in pain but not agony and my scar was healing well. There were no signs of problems, I looked amazing, they said after such a “serious operation”. Now I’ve been back into theatre for drains, pumped full of antibiotics and lost even more weight, does that mark me in a better or worse position than before. My wound has slightly burst where my fistula used to be – a moment that sent me into a panic attack, crying and upset the whole scar was going to explode like last time – so far so good.

I’m keeping my fingers crossed for home tomorrow – if not for my sanity but for the people around me. I honestly don’t think I can hold myself accountable if I have to eat one more of these meals or be woken up again for BP or by screaming in the middle of the night.

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A close call in court – the joys of court reporting with an ostomy and IBD


Before my operation my Crohn’s/Colitis made court reporting an almost impossibility.

Exactly!

Exactly!

I used to sit in agony in courtrooms wringing my hands together until they went white with pain under the press desk, jiggling my legs up and down to try to distract myself from the agonising need to go to the toilet – a need that never left me and always raised its ugly head at the most important moments of a case.

Covering the courts became both a joy and a punishment for me. The real challenge lay not in the reporting of the cases but the endless sitting and waiting, waiting, waiting for your case to come on. For most people the waiting would just be boring, for me it was agonising. While I was interested in the cases (if you have never sat in court and listened to mitigation and witnessed the general drama it is definitely a must – and is nothing like the telly) the constant need to race to the toilet every ten minutes made the waiting unbearable. I once dared to nip to the toilet after waiting through around three hours of driving offences, curfew amendments and restraining orders while feeling like my stomach was being ripped apart from the inside by a claw hammer. I remember racing out of the courtroom to the toilet – which is NEVER near enough to the courtroom you are in – thinking it will just be my luck if they finally hear my case now. I finally raced back to the courtroom five minutes later, still very much in the grip of the blood and pain, only to bump straight into the barristers for my case as they walked towards the Robing Room having heard the case – just typical.

Lesson learned – in the past two years I would rather have passed out than nipped to the toilet again!

Yes, I admit it the fear was always very real that I would pass out through the sheer effort of staying up right in my seat, and I am sure there were times that a jury member or even defendant has looked at me and thought ‘dear God that woman is about to collapse’. I lived in fear of an accident, and in even greater fear of someone making me move whenever a wave of pain flushed over me – when I was still I felt slightly more in control. And I am sure that all the press benches in the magistrates and crown courts that I’ve had the pleasure of sitting in have finger nail marks indented so far into the underside of the wood their imprints could almost be seen through the top.

So after years of covering court cases with the nightmare of my constantly flaring Crohn’s/Colitis, dealing with my ostomy while doing my job seemed like a reality walk in the park. Yes there was always the slight embarrassment of having my ostomy bag changing kit searched through by the security team, (and once or twice having to hand in my rounded cutting scissors at security as a ‘dangerous’ implement) but apart from that attending court was a relatively easy experience. So imagine my surprise when today my ostomy started acting up while I was sat in court patiently listening to each case and waiting for a jury to return. I won’t go into details but I could feel something was going on, and going on, and going on…and boy it just wasn’t holding back, in fact Winnie was going hell for leather. And for the life of me I couldn’t understand why.

So the next two hours were quite frankly hell. I quickly realised that Winnie was going to have to be emptied or we could end up with a pretty crazy situation in the courtroom. Basically Winnie was a ticking time bomb, and I sat sitting nervously trying to concentrate on my shorthand and what the counsel were saying to try to distract myself from the imminent explosion that was building up inside me. The pressure was unbelievable…but I was determined not to leave the room..my old fears about missing things while on the toilet returned and after grimacing through some of the worse pain of my life, there was not a chance in hell that I was going to miss the verdict because of my ostomy – yes, that is how stubborn I am.

Ok, the situation was made worse by my remaining colon continuing to contain active Colitis and me feeling the need to go all the time. The whole thing was unpleasant to say the least, and I just knew I needed to rehydrated and possibly stuff my face with marshmallows to stop this onslaught from Winnie or I would be in a whole new world of trouble soon.

The moment the judge broke for lunch was a blessed relief. I think I actually sighed audibly. As I stood up the weight of Winnie was horrendous and I had to hobble like I had bricks in my pants down the stairs, round the corner to the loo. Court toilets are never an extremely pleasant experience, but I won’t bore you with that.

By the time the day was over I had avoided several natural disasters and learnt a real lesson. While I was in agony with my IBD and the urgency and pain often led to accidents, I could often cope even though it meant me almost passing out with pain until I had a chance to reach a bathroom – with my ostomy this is not the case. There is no grin and bear it. Yes the pain is considerably less, yes the blood is there but it isn’t by the bucketload, but no I can’t stop the flow or ease the pressure when its started…if I wait, sooner or later she will fill up and then, eventually….BOOM! (now that would be a story)!

I will have to learn to cope with it. I love court reporting and I love my job, but I have to keep a close eye on things and remember I’m no superwoman, I’m still human…and, well, Winnie is just a stoma bag she’s not a miracle worker.

A 22 mile bike ride – jelly legs & a bruised bum & hitting streets with Police


Until today the longest bike ride I had done since my ileostomy operation was around three miles. And that had been a struggle. Come to think about it, three miles was probably the furthest I had ridden anything in years, and that was far enough for my skinny little legs.

A quick and much needed break - no I didn't fall off

A quick and much needed break – no I didn’t fall off

So this morning me and Andy (my boyfriend) woke up to a lovely autumnal morning. It was a little cold but absolutely stunning. I woke up fairly exhausted after spending the night on reporting duty trekking around Chester City Centre with some lovely police officers as they tackled drink and drug related crime in the city in the aftermath of the last race of the season. I was with them most of the night running around, trying to keep up with their long strides, and, well trying to not get lost in the crowds of unbelievably drunk women swarming through the city’s streets.

It is a year since I did a very similar operation with the police in Chester. I remember how exciting it was, but how the whole time I was watching the drug dog sniff out wads of cocaine from revellers outside bars and clubs I was constantly panicking about needing the toilet. You see I may not have been in the peak of one of my IBD flares, but I still needed the bathroom around six times an hour, or I would be left gripping my stomach in agony and struggling not to curl up in a ball crying like a baby. I remember managing to throw the pain to the back of my mind until the break – which was after at least three hours – before getting back to the station and locking myself away in the cell-like toilet, and silently sobbing in pain as I tried to ‘let it all out’ before we hit the streets (without loo breaks) yet again. Ok, I hear you say, I should have said something, I’m sure they would have let me pay a pit stop, but I couldn’t and wouldn’t slow them down…I absolutely refused to stand in their way.

townhall_policeThis year was different. With my ostomy bag I hardly had to worry. In fact I made it from 7.30pm until I go home at 11.30pm without having to empty or change Winnie. Yes I did worry I would be caught out, and yes I did worry about needing the toilet – but I don’t think I will ever stop doing that – I’m a bit like Jason Bourne these days when it comes to rest rooms. I did panic when Winnie started going into overdrive at the custody suite while I was looking around the cells where some of the revellers would be sleeping off their booze that night. But she survived and to my relief I didn’t end up having to change Winnie in a cell with no basin and a metal loo!

Anyway, after groggily getting out of bed we made the decision to go for a bike ride. Yes we realised that the 20+ mile round trip was a big ask after hardly stepping foot on a bike since my operation, but after traipsing miles and miles around Rome that didn’t seem like such a leap into the dark for my legs. Oh, and there was a pub to be stopped at on the way…so that helped as an incentive.

I didn’t regret it one bit. The weather was beautiful and cycling along the canal was both exhilarating and peaceful. At first we were forced to weave around walkers, dogs and fellow cyclists as we battled along the canal, but then we finally found ourselves alone, apart from a few ducks and MASSIVE dogs and the scenery became simply something else. For a couple of miles we battled on despite the towpath teetering out altogether leaving me exhausted from the grassy mounds underfoot, or wheel. Then realising I was never going to make it back if we carried on, we finally went onto the road and cycled the rest of the way to the pub…a thousand times easier, apart from the fact Andy got a puncture and we had to stop every-so-often for him to pump up his withering tyre.

The pub itself, The Shady Oak, was quaint. Set on the side of the canal the views were

Waiting patiently for food - I'm screaming inside lol

Waiting patiently for food – I’m screaming inside lol

breathtaking. However the service left a lot to be desired and they didn’t take visas or any kind of cards whatsoever. It was an odd phenomenon going into a cash only pub. That’s when we realised we had cycled 10+ miles and probably could only afford a handful of chips between us!! Luckily we had a bit more and managed to share a buttie and chips – from a ridiculous menu I must add, and a ridiculously long wait of around an hour and a half!

Anyway a few other things happened, but all in all it was a magical day. Now sat on the sofa I feel proud. Ok, I’m no Sir Bradley Wiggins but I dug deep when I thought I had nothing left and managed to complete a 22 mile bike ride, which is amazing when you think six months ago I couldn’t walk up 10 steps without having to stop for breath. I feel healthy, but wobbly. In fact I can’t walk at all without my legs shaking, and my bum feels like it has been head butted by a bull. But it is a good healthy sort of pain, one that I am sure will make me walk like a cowboy for a few days, but one that I can be proud of…this is a pain that means my fitness is coming back…so, I guess I like it!

I can’t wait to do it again. It’s happened, I’ve got the cycling bug!

The last stretch - oh and there is my bessie mate in the car next to me - small world lol

The last stretch – oh and there is my bessie mate in the car next to me – small world lol

Leaving on a jet plane – first trip abroad with my ostomy


So after months of waiting and excitement tomorrow is the big day. This time tomorrow

I am sooo excited - Just one cornetto

I am sooo excited – Just one cornetto

night me and Winnie, and, of course, my boyfriend Andy, will be sitting in a fancy restaurant drinking Italian wine and shovelling down plates full of spaghetti in Venice. I am so excited I can hardly think straight.

I’ve spent the last few hours panicking that I’ve forgotten to do something. I must have checked through my ostomy kit a million times and I still think I might be missing something vital. I have my doctors note for in case they refuse to let me on the plane, why they wouldn’t let me on I don’t know, but I’ve heard all sorts of horror stories, so I’ve decided it’s better safe than sorry. Especially as I’m flying home with Ryan Air, something which I’m dreading as everyone says they are the worse airline for dealing with people with medical conditions, especially ostomy and colostomy bags.

Perhaps they think I’m going to smuggle drugs inside my ostomy bag…best of luck to them if they want to check. Think if they ask to look I will down a can of coke as quickly as possible and eat beetroot, it won’t be a pretty sight either way.

All my supplies for the journey

All my supplies for the journey

Packing for the trip has been a bit of a nightmare. I think I might have gone a bit overboard with the amount of spare bags and products I have packed for Winnie, but I am terrified that she will leak every day and I will run out thousands of miles away from my supplies and out of reach of my delivery company. I did however manage to pack them in style. I went to Primark and bought a very cheap but pretty vanity case so that all my bags, sprays and wipes are now stored together in one place. It may take up a little extra room but it makes me feel so much happier to have them in a pretty case than thrown together in a plastic Tesco carrier bag along with my laundry and toiletries.

I’ve had a few problems with my travel insurance. My company down-right refused to renew my annual insurance or offer me an alternative policy because of my hospital admissions and my operation. This was like a slap in the face. I understand how they work but it is a kick in the teeth to have to go through so much pain all your life and then have to pay so much more than others who have lived without pain for all their lives. Anyway they let me take out a single insurance policy for the trip…looks like I’m going to have to win the lottery, or marry a millionaire if i want to keep going abroad.

Of course I am panicking about the journey. I love flying, but because of my Crohns/Colitis flying has never loved me. I hate the tiny loos and the idea that a frozen block of my bloody poop might kill a random sunbather as it falls out of the sky. I despise the fasten seatbelt sign, which always seems to come on just as I start to get the warning stabbing pains associated with a massively long toilet session. the same can be said for the ascent and descent, basically the times when no one can move are the worse…for an IBD sufferer it is hell.

I’m feeling apprehensive about the flight. I’m concerned about what I can and can’t take on with me. Luckily Charter UK (my delivery company) have provided me with a travel card which says – in multiple languages – that I have a medical condition and an ostomy bag and need to carry medical equipment. I have a feeling that this card might just save my life in these kinds of situations. My doctor has signed it and I have stored my sprays and water dispensers in a clear plastic bag along with my lip gloss..but just in case they are confiscated I’ve got a spare stash in my luggage.

Happy after a run in prep for our Italian holiday

Happy after a run in prep for our Italian holiday

It’s almost time to go. I’ve spent the last hour looking up restaurants in Venice, Florence and Rome (our three amazing destinations) which accommodate lactose intolerant diners. I can’t wait to tuck into some vegan ice cream in Rome…and scoff plates of spaghetti Bolognese. But more than that I can’t wait to do my first international stoma bag lady challenge – ride a gondola in Venice. It is meant to be very expensive, but I have always wanted to do it so it’s going to be really magical.

Me and Andy deserve a holiday. After everything that’s happened with my health, and the massively bumpy ride we’ve been on over the past year or so with my Colitis and my ileostomy operation, and even the stress of moving in the last few weeks, kicking back in Italy will be just what we need.

I couldn’t hope for a better boyfriend and I can’t wait to take him to the Ferrari museum to go on the F1 simulator. I also can’t wait to experience the romance of Italy and share it with Andy.

We are away for nine days in total. I will try to blog, share pics, tips and experiences when I can, but if you don’t hear from me just know that I will be having a heck of a good time.

Going abroad with my ostomy is a massive leap in the dark. It is, in itself, a massive challenge. We will be flying, getting on trains, eating foreign foods and attempting to communicate my condition and allergies in a foreign language and environment.

Yes I’m nervous…but am I excited?

Hell yeh!!

 

 

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!