Braving a bikini after ostomy operations – what was I so worried about?

Over the last few years photographs of young women baring their ostomy bags on beaches across the world have become a regular sight on social media feed, so much so I don’t even notice their bags anymore.

Ever since the first photo appeared on twitter of a “bag on the beach” I’ve been trying to get up the courage to bear my belly to the summer sunshine – but I’ve never quite been brave enough.

But this summer after years of hiding my pasty white belly from the world I finally plucked up the courage to wear a bikini for the first time since my operations.

For years I somehow had the confidence to wear the tiniest little string bikini, you know the ones which are just a little flimsy triangle of material – not even enough to wrap a sandwich in let alone cover your modesty.

In my experience those tiny pieces of cloth are designed to cause as much embarrassment for young women as possible. Firstly they never fit properly and, even if they do, they happily malfunction if you try to do anything other than lie flat on your back sun worshipping all day.

There’s nothing like the horror of being hit by a wave or shooting out of the end of a log flume only to realise you are topless and flashing your boobs to the whole world, all while your top floats around taunting you, looking rather like a black turd bobbing around in the water.

For all those reasons, and due to a lack of confidence, I opted for a much safer alternative for my first outing in a bikini since my operation – the high wasted granny pants and bra top.

Despite my massive pants pretty much covering all but the very top of Winnie, walking out to the pool in Santorini on the first day in my bikini filled me with a sense of dread. I was worried people might stare; perhaps wonder if it was sanitary for me to be in the pool; and what they would think when my belly started to expand.

I hardly notice Winnie in my day-to-day life anymore; I can wear pretty much anything I want and don’t really care if people can see the outline of my bag under my dress or top, but for some bizarre reason the thought of lying by the pool with my bag on display frightened the living daylights out of me.

It was ridiculous to be so worried and insecure, naturally no-one batted an eyelid.

Actually the hotel we were staying in was so small I would have felt comfortable going the whole hog and I wish I’d taken a tiny little string bikini in my bag in case I’d got the guts to go for it by the time we left.

To be honest it was probably for the best that my bag was securely tucked away – the wind was so strong pint glasses went flying, so my ostomy would have been flapping around like a white flag in the wind which wouldn’t have been pleasant for anyone.

Hopefully one day I will feel comfortable enough to strut along a beach with Winnie on display, but I don’t think I’ll be swimming in a tiny string thong any time soon, experience tells me not to risk outfits secured by flimsy knots after a certain age.

I hope if you’re going on holiday in the next few weeks you have the confidence to wear a bikini, if not loads of department stores have some really stunning swimming costumes on sale at the moment, including ones with tummy control and little skirts to hide any telltale signs of your bag.

 

This is the one I wore two years ago in America, which was great at covering my ostomy so soon after my operation…..it also helped after eating my own weight in burgers! 

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”.

 

Covered in blood – when black tie goes wrong with a fistula

What happened on Friday night will remain etched on my mind forever as one of the worse moments of my life so far with an ostomy. It was also the moment I realised I had to have the operation to make my ileostomy permanent or I would live the rest of my life in fear of humiliation, pain and discomfort.

It was probably the final straw in a very long and painful journey, and perhaps exactly what I needed during these final days before my big op.

This entire week (well last few months really) has been a battle. I’ve been living in a constant flare for so long I can hardly remember what it feels like to be well (how I felt in the weeks after my op). I have no idea how such a tiny bit of bowel can cause so many problems, it must be ulcerated beyond belief to be causing so much pain. But the last few months my colitis has starkly reminded me of what life was like before my operation and the horrific pain simply being alive every day entailed. The impact that tiny bit of inflamed bowel has had has been astonishing, and I no longer know how I coped for 13 years with the constant pain, vomiting and diarrhoea. I was either very stubborn or a saint to put up with the torment for so long, and it is something I can no longer comprehend.

Over the past few weeks my health had gone rapidly downhill. My nose is so stuffed with impetigo – it bleeds and cracks when I dare to sniff or crinkle it, and my eyes have gone bright red and tender. This morning I woke up and one of my eyelids was glued together – something that not only hurts like hell but makes you feel like your tearing your lids apart as you prise them slowly open with hot water. My joints pull and crack as I move and it hurts to lie down. My fistula constantly pulls and tugs, making me nauseous, and is producing around two pints of blood and mucus a day. And despite my bowel not actually being connected to my digestive system, I still, for reasons beyond comprehension need the loo with upmost urgency five or six times a day – but I am unable to fart (cruel beyond words).

I guess the result is I feel like a withdrawing crack addict – the reality is my ulcerative colitis is saying goodbye in style.

Anyway, on Friday, with just days to go until the dreaded op and with doubt still hanging over me like a dark shadow of doom, I pushed away my pain and fears and headed out to a black tie event with my boyfriend. All day my fistula had been playing up; it pulsed in a sickening manner all the way through a law refresher at the Liverpool Echo offices, almost leaked through its bag as I was talking to shocked shoppers outside an alleged knife attack in an Ellesmere Port supermarket, and had general paddies all day. Despite this I dared to put on one of my favourite dresses and head to an evening for my boyfriend’s work.

The evening was filled with the elite from the engineering world, the local MP was there and it was a generally fancy and elegant affair. I was enjoying myself chatting with Andy’s work colleagues and eating some decently edible food, but in never stooped being aware my colitis was not going to be cut away from me without a fight. Safe to say I couldn’t fully relax through fear of my ostomy exploding or fistula leaking, and kept nipping to the loo to check everything was fine. It always was.

What happened was worse than I could ever have expected.

We had just finished eating and I noticed a small mark on my blue dress. I looked down and noticed the mark was a little bigger, then I slowly noticed my dress was damp. My first thought was that I’d spilt water over myself, my second was that my ostomy had leaked. As I stood up I realised the situation was far worse, my dress was saturated. Luckily the room was dark so no one could see the full damage, but I knew right then something had gone badly wrong and this was not a slight leak or, as I’d wrongly thought, a slight water spillage on the front my beautiful dress.

My dress was so wet I could hardly walk as I staggered to the bathroom. As I inspected the damage I almost burst into tears. I’ve experienced some of the most horrific and darkest moments of my life in toilet cubicles (passing out, doubling over, sobbing, sleeping on the floor, screaming out for mercy and help) but this was one of the most panic stricken and desperate of all. It took everything in my power not to breakdown.

The under layer of my thin dress was so soaked in blood I thought I’d been stabbed. As I inspected the damage I started to think I’d started my period or badly cut my abdomen. My knickers were so soaked in sticky mucus and blood I actually, I’m ashamed to say, took them off and thew them in the sanitary towel bin. The blood – which I quickly realised had been caused as my fistula spurted out mucus with such force it pushed off my fistula bag (baby Stoma bag) and shot out all over me instead – and horrific smelling mucus was all over me…it even trailed down my leg…I even had it on my foot.

For a moment I just sat and gawped in total shock. I couldn’t understand how I hadn’t felt it happen. How did I not notice this disgusting smelly substance leaking all over me? Then I realised this was going to ruin my evening and stop my partner spending time with his colleges, and stupidly thought that by moping everything up with tissue I could get away with it. But I soon realised no amount of toilet roll was going to shift this, I was simply caked in it.

By the time we got home I was in tears. As I got in the shower I stared at my body, at my fistula, and i wanted to rip it from my body, I wanted to scream and scream how much I hated the hand I had been dealt. And as I changed the blood soaked bags I took pleasure in knowing it would be one of the final times I would have to deal with this horrid second bag, which leaks and drips every couple of days and leaves my skin blistered and weeping.

By the time my tears were dry and dress was in the wash I realised that this was exactly the sort of humiliating, painful and exhausting moment I needed to realise I was making the right decision. People may not be able to tell I have a ostomy bag (I often forget) but they/I sure as hell know that troublesome fistula is there. Especially when it leaks repulsive smelling grunge everywhere.

And you know what everyone, especially me, could live without that forever.
In the words of the Lion King – it’s time!

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Valentine’s Day with the other O word – ostomy

This is an amazing post about a subject many of you have tweeted and asked me questions about since my operation, sex!

AHH

As of yet I haven’t felt comfortable talking about my sex life on my blog, mostly because my parents, siblings and employers often check what I’m up to and I’m not sure I feel comfortable about them reading about what I get up to in the bedroom department.

But this blog entry by a woman I admire deeply for her honesty over all issues to do with living life with a Stoma says everything perfectly, and just in time for Valentine’s Day too.

Personally, intimacy following my operation has been difficult to come to terms with. I have embraced all other aspects of life with a bag, but there is a lot to get used to and I think it’s not unusual to find yourself feeling unattractive when it comes to intimate situations. I have accepted my new body, and so has my partner, but I still have days which are tougher and I feel less attractive (due to bloating, leaking, bad fistula output, and general crappiness) than the last.

I know that I am attractive, and having a bag is a wonderful life changing thing that I should embrace, but like every woman I have days where I just feel unattractive and unhappy with the way I am, mostly that is related to my bags – almost every time my leaking fistula bag.

This Valentine’s Day I wanted to say thank you to everyone who is brave enough to talk about intimacy issues after surgery, which has helped me realise that there is a transition period and I should stop giving myself such a hard time. Living life with a ostomy takes a long time to get used to, the benefits are massive, but it’s ok to feel down some of the time.

I also want to say thank you to my boyfriend whose love and loyalty have never swayed despite all the sickness induced nagging. He has stuck with me through all of this journey, and I have never failed to be anything less than beautiful in his eyes. His support has made all of this so much easier to come to terms with, and I am so lucky.

Anyway I hope you find this blog entry useful from The Stolen Colon

I have debated for a while about writing a post on sex. I know my parents and my parents-in-law and even my grandparents read my blog (I’m giving you fair warning that this is one post you can skip!), but I know that sex is an important subject when it comes to ostomies. It’s probably one of the first questions you have when you know you are going to have surgery. I know it was for me. You wonder not only about the “how is this going to work?” but also the “how am I going to feel?” It’s also a hard question to bring up for many people, so I figure here, on Valentine’s Day Eve, let’s talk about it. And we’ll talk about it online so you don’t actually have to bring yourself to ask about it.

Like I said, one of my first questions once I decided to go through with the surgery was, “how is this going to affect my sex life?” Thankfully I had a surgeon who this wasn’t his first go-round and he knew it was probably a question I had so he brought it up without making me have to. He told me that it would not change anything majorly, but it would be an adjustment, especially after getting the rectum removed. The rectum is right up against the vaginal canal and provides support, so no longer having it made things feel different. Not bad different, just… different.

Let me first go back to before my surgery. Sex has always been a little difficult for me, as I’m sure it is for many people living with Crohn’s disease or ulcerative colitis. There are so many concerns when living with a bowel disease. I was worn out easily, so I wasn’t always up for it. My stomach might be hurting and I’d be concerned about upsetting it even more. And then there is always the worry that when having sex, something might sneak out. You know… from behind. That was always a major worry. And it led to me tensing up a lot and trying to make sure that I was holding everything in, which didn’t always lead to a pleasant experience. But I love my husband and I know that sex is an important part of a healthy, long-term relationship. Still, sex, a lot of the time, became more work than fun.

So I was nervous giving it another go after my surgery. I knew I would no longer have to worry about the whole holding-it-in thing, but other concerns come along with it. Will I feel sexy? Will the bag get in the way? Will it hurt?

It was maybe 4-6 weeks after my surgery that we decided to give it a try. ( I did have a completely laparoscopic surgery, so if you had an open surgery, it could be a different experience.) If I’m going to be honest here, it was difficult at first. Yes, it hurt. Yes, it felt different. No, it was not fun. I am very glad that I have an understanding husband who is willing to be patient and let me take it at my pace. I would say it took at least about a month to start feeling comfortable again. So don’t get discouraged if it’s not what you think it will be right off the bat. Give it time. Take it slow.

Unfortunately, when I had my second surgery, we had to start all over again… again. It was my second one that removed the rectum so it felt even stranger than before. Plus, I still had a wound that was very close by that was trying to heal up and forced us to take things even slower. It was probably closer to six months until I felt like we were really back to the way things should be.

Right after my surgery, I was scared that I would no longer feel sexy and that my husband wouldn’t look at me the same way. Let me just say once and for all, I was wrong. It wasn’t immediate, but once I knew how much better I was feeling and got used to the idea of having an ostomy and a bag, I felt even sexier. I wasn’t worried about what might happen during sex and I was free to enjoy it the way you’re supposed to.

The bag does get in the way sometimes, though, so I wear one of my wraps to keep it in place. I also don’t have to worry about it getting pulled on it in any way. (These are the basic ones that I use from Target, but Awestomy and OstomySecrets have some fancier ones.) The wrap also helps me to not even consider my bag during those times.

I know that I have a different story from some in that I was already married when I got an ostomy and my husband was there to help me make the decision and to actually go through all of it with me. But for those who are not in the same situation, I would encourage you to not let your ostomy hold you back. I believe you will find the other person won’t be bothered by it and will more than likely be supportive. I mean, it’s sex. Why would you let something silly like a bag on someone’s stomach get in the way of that?

But in the scenario that someone does take an issue with it, then be honest with yourself, is that really somebody you want to continue a relationship with? If they have a problem with an ostomy bag, then they probably have other issues, as well. It’s their problem. Not yours.

In the end, even though there was an adjustment period and some initial concerns, I have found that sex can be just as, if not even more, satisfying with an ostomy than without (especially if you are dealing with some of the same issues I was beforehand). Don’t let it hold you back. You are still a beautiful/handsome/sexy person with or without a colon and with or without an ostomy bag. So enjoy it!

http://stolencolon.com/2014/02/13/out-of-the-bag-sex-ostomy/

A half pint of blood and mucus – my fistula’s final hurrah

Sorry I haven’t written for a while, the last couple of days have been a little chaotic both in and out of work. It has also been a tough week for my health, which always suffers at a time of stress and leaving dos – with late nights, long working hours and general stubbornness and excitement causing chaos with my colitis.

This week I’ve been in a considerable amount of pain. My fistula seems to know it’s only got a month left to torment me, so it is unleashing hell, in what can only be described as a ‘final hurrah’. I’m often surprised by how much mucus my tiny rectal stump can generate in a short space of time. On Thursday I was in agony at my desk as it pumped and squeezed. When I went to the loo to assess the damage, I understood why – in just ten minutes my tiny inflamed section of colon had produced around half a pint of blood and, well, horrible smelling goo.

Every time this happens I wonder how it manages to produce quite so much. Even now I still pass blood through my bottom end four or five times a day, and with my fistula bag (a baby ostomy bag) needing emptying at least three times, that is a heck of a lot of mucus my colitis is creating.

I can’t bear to remember how I coped when I had meters of the bloody thing! There’s no wonder I was going to the loo 20-30 plus times a day, when you look at it like that.

Right now I’m exhausted. I’ve given up on my health with the happy prospect that in a month I might, fingers crossed, never have to deal with any of this crap ever again. My eyes are bright red again (a sign of my inflammation markers shooting through the roof), my mascara has gone in the bin and my makeup brushes have been declared a “toxic zone” until I attack them with a bottle of baby shampoo later today. Yesterday I resumed the agonising eyelid hygiene treatment in a bid to get rid of the crust forming around my bright red eyes. This involves cleaning them with water as hot as you can cope with (without burning yourself), and then cleaning them again with cooled water with bicarbonate of soda in. It hurts and leaves you feeling raw – but it works.

Before my surgery when I was ill I looked ill. I would look drawn, tired, and as if I was being held up by an invisible string that might snap at any movement. Now, knowing I’ve had my surgery, I apparently look “well” most of the time. Well, that’s what people insist on telling me. It is nice to hear, but when you feel like your going to puke, your stomach is pumping out blood and your brain is yelling for you to go home and get into your pyjamas with a hot water bottle and wait for it all to be over, someone smiling and saying “you look so well”, can be hard to deal with. My response is always that I’m not 100 percent there yet but I’m a million times better than I used to be – what I want to say is “thanks, but I don’t feel well”.

It sounds silly and selfish and I’d rather someone told me I look good than “anorexic”, “skinny”, “pale” and “bloody awful” – all things I have been referred to as time and time again – but sometimes you just don’t want to hear it. In fact at a work do on Thursday a former member of staff said “your not right are you, I can see it in your face” moments after another told me I looked fantastic. Ok, she has Crohn’s too, so she knows the warning signs, but I think I appreciated her honesty and her concern more than any of the compliments I’ve had over the past six months since my op.

I spent far too much of that night talking about my condition. I chatted about Sir Steve Redgrave, Darren Fletcher and my horrific experiences in the hospital, until I didn’t want to talk about it any more. It’s not that I’m not open (totally the opposite actually, I’d tell a stranger on a bus about my condition if Winnie started farting), sometimes I like to try to forget I don’t have it and just pretend I am a normal healthy person.

I’ve stopped sleeping properly really since my pre op assessment. I’m having weird fragmented dreams and waking up at random times again to my fistula pulsing and twinging. I’m tired of it, but I know worse is to come in the next few weeks.

I’m excited and apprehensive about my upcoming stint at The Mirror and my time staying in Canary Wharf. I’m just hoping my colitis doesn’t get worse, my eyes lose their monster crust and my skin stops bleeding and breaking for long enough for me to enjoy it.

Mentally, physically, emotionally how do I prepare for surgery? – doubt creeps in

On Tuesday I had my pre assessment to remove the last of my inflamed colon and make me and my stoma inseparable forever.

not my surgeon but an internet pic

If I’m honest I’m not sure how I’m feeling. Last time I didn’t have to go through all of this waiting and worrying. I feel a bit like I’m awaiting sentencing for some sort of crime. Almost like being bailed by police and awaiting my day in court. I can’t stop thinking about what will happen on the dreaded day and the horrific recovery time following me waking up in that horrible hospital bed.

Let me clarify…I don’t think having an ostomy bag is comparable to serving a prison sentence, but from my experience the recovery period can be hellish, mind numbing and frustrating.

I’m feeling torn. I can’t wait for life without the constant pain of IBD – the blood, fatigue, sleepless nights and none stop illness – and I can’t wait to be rid of my leaking fistula, but in the same breath I’m apprehensive about life following my operation, frightened of the operation, waking up hooked up to monitors and machines, and even life never being free from my bag.

I left the hospital on Tuesday, not feeling reassured or positive, but feeling confused and slightly angry. While I was there, sat on my own, I was treated with and witnessed the normal incompetence you hope not to see in the people who you are entrusting with your life. If I wasn’t so confident in my surgeon I would have run out of there screaming, cancelled my operation and jumped on the next plane abroad so they could track me down. I was directed to departments I didn’t need to visit, taken for a blood test with a non nurse who dropped things on the floor before trying to put them in my arm, and then proceeded to put my extracted blood on top of a warm radiator – hmm I’m no medic but even I know that isn’t how it’s done!

Two and a half hours after walking nervously into the hospital I left to head back to my normal working day. I felt well and truly messed around, emotional and unsure. It took all my will power not to turn around, walk back to the desk and tell them I no longer wanted the op. Instead I composed myself and attempted to pull myself together enough to drive to Crown Court to get on with my job, shockingly enough I found it difficult to function for the rest of the day.

Tuesday was the first time I really started to doubt I’d made the right decision about having my ostomy permanently. Now I’m worried that I’m getting cold feet. I’m sure it’s just nerves talking but I’m really starting to wonder if I will regret my decision in years to come. I know my health really must come first, and I know it’s fear talking, but there are real issues which are playing on my mind. What if I come to hate my body; what if the scars are ridiculous; what if the fistula doesn’t go away despite the operation; what if I lose my confidence; what if something goes wrong and I end up unable to have children? I just don’t feel like these questions have been addressed.

Instead one thing stuck in my mind – it was something the nurse dealing with me said when I asked to speak to the colorectal specialist nurse to get some of these questions answered. She said: “she is currently dealing with someone who is having a serious operation” – then realised what she’d implied and made matters worse by saying “not that yours isn’t serious dear”.

Having my ostomy on a temporary basis has been fine. But I worry perhaps I have coped so well because there was always the tiniest option one day I might live life without a bag, if I have this operation that slight chance will be gone forever.

But now I’m used to Winnie and I’ve embraced her it would be silly to have her reversed, knowing that one day I would have to go under the knife yet again to get her permanently. If I don’t do this now I’m just delaying the inevitable.

I guess what I need is some advice. I need to know how to prepare myself for this massive thing I’m about to face. What should I do to get ready for my operation, mentally, physically and emotionally. Last time I was an emergency, there was nothing I could do but hope and pray, this time I have just over a month, yes a month packed with a trip to the Mirror and other exciting things, but a month to worry myself sick no less.

Please if you have any advice let me know, things to ease recovery, make me smile when I wake up and things to look forward to. I’m not going to live like a nun in the weeks before my operation, I want to calm down but still see friends and enjoy life – after all there will be months of sitting around bored shitless afterwards.

Free prescriptions with an ostomy – it’s about time my IBD has cost a fortune

I’m so sorry for not posting for the past few days, it has been unbelievably hectic at work. But after a day hiking up mountains and ransacking my flat, throwing out all the rubbish me and my partner have collected over the past year, I thought it was time to update you all on one amazing thing that happened this week.

I now get free prescriptions.

For the past 13 years I have paid through the roof to suffer from Crohns/Ulcerative Colitis. In fact the prescriptions have got so expensive I have had to rely on my parents to pay for the endless amount of green forms that I have needed to get filled in on an often daily basis. In fact my parents soon realised that it was more than worth shelling out the £104.00 for a prepaid prescription card. In fact paying up front for my prescriptions, instead of shelling out £7.85 for each item quickly saved both me and my folks a fortune…indeed just one month after paying out the cash we had got our monies worth after I was prescribed a shed load of painkillers, steroids, ensure drinks, suppositories, asacol – to name just a few of what the doctor decided I needed to shell out for – which would have cost around £80.

For people living with chronic conditions or who have children with illness prescriptions are too expensive. It’s that simple. If you have an ongoing condition simply buying your daily medication can tip your finances over the edge if your already struggling to make ends meet. I have no idea how families with one or more people needing constant medication manage to even put food on the table. And it’s not only the maintenance medication that needs to be forked out for every few weeks; it’s the emergency steroids, and the constant antibiotics, eye drops, haemorrhoids, joint medication, skin medication, creams, lotions and potions and all kinds of other things inflicted upon us due to our low immune system caused by our chronic illnesses.

I think if I’d kept all my prescription slips over the past 13 years I would be drowning in a sea of green forms. I don’t think there would be anywhere for me to lie down; I wouldn’t be able to cook, bathe or even sleep…let alone find the medication I’d paid my entire salary for to keep me alive. And I think by now – if it wasn’t for help from my parents and their amazing idea to get the prepaid card – both me and my whole family would have forked out way over £10,000 in money for my medication alone – it’s probably been about that much anyway!

If it wasn’t for my parents paying for a lot of my main prescriptions I honestly don’t know what I would have done. On a trainee reporters wage £7 plus two, three, four times a week would have been too much and as a student it would have meant eating baked beans straight out of the tin – that wouldn’t have been good for my IBD diet at all.

I’ll attempt to do a sum here – if I’d paid what it costs now £7.83 for one prescription a week (I know it used to be less but this is just to prove a point) for 13 years it would have cost:

ONE PRESCRIPTION PER WEEK = £31.32 a month (I think) eek my maths are not great

£31.32 x 12 = £375.84 a year

= £4,885.92 for 13 years

And that’s only one prescription a week – some weeks I still have five or six. I would probably say that until I had my ostomy last year I was probably averaging four prescriptions a week – which could go up to eight or nine – so that makes it more like £125.28 a week or £1,503.36 a year or £19,543.68 over the past 13 years. And that doesn’t even take into account my ostomy bags and accessories. Oh, and all the years of Infliximab and other infusions which were (not sure about now) paid for by the NHS.

So a couple of weeks ago, after seeking some advice from the trusty internet, my mum encouraged me to go to the doctors to see if there was any chance of me getting free prescriptions because of my ostomy. And there was. Because I have an ostomy and a fistula I am eligible to get free prescriptions. I know that most websites say that you need a permanent stoma, colostomy or fistula to be eligible for free persriptions, but my doctor told me to apply – and it worked.

Free from now on

And i’m not cheating, my ostomy will become permanent this year. And, you know what my Crohn’s is not going away. In my opinion anyone with this condition should be entitled to free prescriptions. I know we don’t have it as hard as the US, I won’t even claim to be medically bankrupt, but if I’d had to pay for three years of infliximab I would be.

And if things couldn’t get any better, the form says that even if your medical situation changes you can get free prescriptions until your card runs out – they last five years and for all that time all of your prescriptions, whether related to your ongoing medical condition or not are free.

It’s about time, that’s all I can say.

For more on free prescriptions if you have an ostomy or colostomy see http://www.stomawise.co.uk/lifestyle/prescriptions-medex

For more on prepayment certificates – they really are worth it – http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx

 

How to apply for a Medical exemption certificate

To apply for a Medical exemption certificate ask your doctor for an FP92A form. Your GP, hospital or service doctor will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from one month before the date that the NHS Business Authrority receives the application form.

The MedEx lasts for five years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed. If you don’t receive a reminder, it is your responsibility to ensure that it is renewed.

You can find more information about the application process and refunds on the NHS Business Authority’s website.

Halloween treats and bonfire delight: a lego man and a pumpkin let loose

Yes that is me

Wow did I really try to eat all that?

Some of the gang – Andy’s lego man head was a hit

Pretty

A fairly healthy tea considering everything

The last couple of days I have felt very tired, but despite feeling a bit gloomy (like the weather) over the prospect of the next lot of surgery which could be looming just around the corner I’ve decided to get cracking with getting fit – oh, and did I mention having a bit of fun.

Over the weekend I let myself go. Ok, so I didn’t go mental, but I had a bit of organised fun and games. Starting with my mate’s Halloween party on Friday night. In all fairness I am surprised I made it to the party at all. For a start I didn’t feel great, it was chaos at work, and then to top it all the most essential part of my outfit didn’t arrive – it was only a purple dress but you can’t really go as Daphne from Scooby Doo without a purple dress. I traipsed around town for about an hour, but I couldn’t find anything. At one point I even found myself in Ann Summers’ where the over-keen sales assistant tried to coax me into trying on a range of highly inappropriate outfits, which frankly wouldn’t cover my small finger let alone my entire body. In the end I, for no apparent reason, felt the need to tell her I didn’t want to wear a skintight leopard print leotard or an all in one PVC cat suit, by saying “I’m sorry do you have anything a little less clingy, I have an ostomy bag”…..don’t ask me why I said it, I think I wanted a way out without resorting to using one of the shops whips as a weapon.

I’m being serious. It might seem like a bizarre situation, but I was being honest and she was very helpful. But despite her best efforts she couldn’t coax me into any of the whips and chains outfits – I’m not sure I’m in any way ready for that sort of thing….not that I ever will be.

I ended up searching in every fancy dress shop minutes before the city centre totally closed-down, but couldn’t find anything that wouldn’t leave me tugging down my skirt all night so the whole party didn’t get a peek at my pants, or that wouldn’t leave me trying to perform a magic trick every time I needed to empty Winnie (ostomy bag).

I went home rather depressed, sobbing about how unfair it was, and then turning into a world class cow stropping all over the place and insisting I would under no circumstances be going to the party – at one point I think I said I could go as myself without makeup (a scary sight for anyone). Anyway my poor boyfriend battled massive queues of traffic to stop at a fancy dress shop and hire me a pumpkin costume….was i pleased? Was I heck – well nothing was going to be right at this stage.

I stropped around in my giant orange ball complaning about looking fat, bloated, unsexy, until I totally ran out of things to complain about and just sulked. But when I got up to the party everyone thought I looked fantastic and I quickly started to enjoy myself. It was strangely liberating to wear an outfit that didn’t need constantly tugging at, that you weren’t afraid of drinking spirits with fizzy pop in, and that I didn’t need to keep checking Winnie was showing under my tight clothes.

And if I may say so myself I made a fairly cute pumpkin….maybe I will always wear a pumpkin outfit when I’m feeling grumpy. Unfortunately it didn’t seem to matter how cute a pumpkin I was, at 2am when we all stumbled across to Telford’s we simply couldn’t get in. I even shrank down into my pumpkin shell like a turtle to show how gutted I was – seemingly a cute, but probably weird thing to do at the time.

To be fair I wouldn’t have let a pumpkin, lego pirate, dead Egyptian, Batman and Red Riding Hood in either. We must have looked a right sight coming down the road.

Then on Saturday, after getting over a very horrible hangover from drinking the most I’ve consumed since my surgery, which still wasn’t really that much to warrant feeling like being hit in the head by a double decker bus, we went to the city’s annual firework display. It was raining and there were gale force winds blowing the fireworks alarmingly in the direction of the crowds, but it was magical and special, especially seeing as this display was mine and Andy’s first official date (so kind of our anniversary) two-years-ago.

So despite the fact I’m still picking glitter out of my eyes (from Halloween makeup) and feeling like I want to sleep all the time, I’m feeling generally happier. Tomorrow night is the 02 media award ceremony so I need to go and pick out my dress from my trusty wardrobe, and on Thursday after another scan at the hospital  I’m heading to London to see Andy and watch the Lion king!!! Horrah!

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!

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.

Surviving Crohn’s a Review: The Foul Bowel by John Bradley

Living with IBD is no laughing matter. It’s like serving a life sentence, but while

honest, candid and hilarious a must read for those with IBD

murderers and pedophiles can get off early for good behaviour, for those unfortunate enough to be issued with the piece of paper branded IBD along with the complimentary hospital tag, life really does mean life.

Over the years I have been through some truly humiliating experiences and many of them have left me shaken and in floods of tears. The pain, the accidents and the true horror when you first realise that you’re going to have to live with this horrific condition for the rest of your life, would be enough to reduce even the most hard man about town into a blithering wreck.

If someone told me that one day I would be looking back and laughing, laughing so hard that my ileostomy scar split, at all the times when I stuck my bare bum in the air like a red bottomed baboon and let some student doctor pump gallons of air up my arse, or at the first time I tried to administer my own suppository and got it painfully wrong, I guess I would have laughed in their face.  But while reading The Foul Bowel by John Bradley that’s exactly what I did.

I’ve seen a lot of comedians over the years, I’ve seen a lot of funny things, but I can’t say that a book has ever made me laugh that much. Sometimes it felt wrong to be laughing at something that has caused me so much humiliation and pain over the years, to laugh at the appalling things this condition has put me through and to marvel at the total incompetence of the doctors, surgeons and dietitians I have encountered over the years. Scrap that…it was just what I needed. Laughter really is the best medicine, and the way John described his barium meal experiences left me creased over in laughter at something I still consider to be one of the most uncomfortable and humiliating moments of my young life.

The subtitle of this book is 101 ways to survive and thrive with Crohn’s Disease, and in a way it is a self-help manual. I didn’t agree with everything John had to say, I didn’t agree with everything he said about wards verse private rooms, as I have had some hilarious and terrifying experiences on the NHS’s crazy communal wards, but I do agree that at least you can watch the world or the madness go by. The candid way that he talked about his work, coping with the disease, having a love life and basically surviving was refreshing, and it made a lovely change to read about the illness from a man’s point of view, something that rarely happens even in this newish era of blogging and the world-wide web.

I read the book on my kindle in coffee shops, hospital waiting rooms and in bed while recovering from my ileostomy op. People must have thought I was reading Jennifer Saunders’ autobiography or some new hilarious comedy from the way I was gripping my stomach and writhing around in pain as the fits of laughter tore at my stitches threatening to tear open my stomach and expose my insides.

This book should be in every gastro ward. No, I’ll go further than that. This book should be given to every single patient when they are first diagnosed with IBD. I guess if I’d read this all those years ago when I was first told I would have to live with an incurable illness for the rest of my life I would have realised I would be able to cope. I guess I would still have realised that having Crohn’s or Colitis is one hell of a rollercoaster, and that my life was going to be one massive battle, but I would have been able to say hey, this guy went through all that and he had time to write a book, he’s doing ok for himself. I guess what I’m trying to say is that if I’d had this at the time all of that was happening I would have been better prepared and it would all have seemed just a little bit less scary.

“Having Crohn’s Disease is like being transported back to being a helpless infant. People talk at you using an incomprehensible language. No one seeks, welcomes or values your opinion. Mummy, in the guise of the medical profession, most definitely knows what’s best for you. Your food is bland, mushy and generally appalling. Your poop becomes an object of fascination for others”., John Bradley, opening of the Foul Bowel.  

Hats off to you John for being so honest.

http://www.foulbowel.com