Tag Archives: bag

The important things in life……

Over the last couple of months, there has been lots going on in my life and yet I still seemed to have had writers block and not been able to come up with a post, despite always saying I would definitely write weekly! But certain things have taken place this week and it has made me think and given me some inspiration for my blog.

There was a lot of negative press over Black Friday and people pushing and shoving and shouting over reduced price TV’s and I had to wonder, when did we all become so materialistic? I have made no secret of my love of shopping, but I simply cannot be bothered to attempt going out into a bull ring full of aggressive shoppers determined to snap up a bargain. I cannot say that I have not been guilty by the tempting pull of the material stuff, I mean I am still searching for the perfect travelling outfit (It’s nearly there, but must consist of comfort yet class and glamour) and I keep finding the next item I simply must have. But, I do not let it consume me.

There are people in life that would be happy with a safe home, running water and food on the table and want for nothing more, the last thing on their mind would be a bargain TV. Yet we seem to forget this. I work in a job where I am surrounded by sadness, it is hard to work for a cancer charity and not feel it. Because we are still a small charity, we often get involved on a personal level, this is really nice as people fundraising for us can see how much we appreciate it, however, it also means being affected on a daily basis by the complete sadness that comes with people suffering from cancer.

Because of this, I am constantly appreciating what I have in life and being grateful for waking up each day and feeling healthy. But I also know, first hand, what it feels like to feel you are not going to make it and I also know how quickly life can change. I never in a million years ever thought I would have to wear a bag or have a permanent stoma. That was never part of my life plan and certainly not something I would ever have chosen. I know that in an instant, life can change so dramatically it will never be the same again. We take simple things for granted, like having an unblemished stomach, all of our limbs in tact or a body that can help us to live each day, we never expect to have these things change. And as much as people may admire my grit when it comes to living with a bag, I bet each one of them will be feeling so glad it is not them.

Just yesterday I was out with Mike, my sister, her boyfriend and some friends, we were in a pub when I realised I need to empty my bag but the worst happened and I felt like it had leaked. Upon a visit to the toilet it had leaked, now not wanting to go into too much detail, it was very watery, which made it near on impossible to deal with. Fortunately, I have a wonderful sister who came to my rescue and helped me and we got me sorted. I was determined it wouldn’t ruin the rest of my evening and carried on. Yes I got upset but that’s natural. Unfortunately, a bag leak knocks your confidence but you cannot let it stop you getting on with your life, there are worse things that can happen. I have always been honest about how I actually appreciate my bag as it gave me life back, but at times like yesterday I can really hate my bag and feel a bit down that I have it. But I will never feel sorry for myself because, I am alive. I also have so much to be thankful for, a nice home, a good job, lovely friends, an amazing family and a great boyfriend, sometimes I have to pinch myself that life is treating me this well. But as I said earlier, it is so important to appreciate every moment as it can so easily be snatched away, hopefully it won’t but it’s still better to be grateful.

I remember being in hospital before my operation and feeling so dreadfully ill that I actually thought I was dying (In a way I was, the op saved me), and I also remember feeling at peace with it, I always assumed if you were dying through illness it would be really distressing but there was something peaceful and accepting about it. However, all I cared about and all that mattered was knowing I had love in my life and just hoping my family knew how much I love them. There were no regrets, no ‘I wish I had…’ it was all about my loved ones. Nothing material even crossed my mind. Although, I do also remember thinking it would have been nice if I had managed to get in one last glass of champagne (well, this is me!). Fortunately I lived to tell the tale and got to drink  my champagne, so I can’t hate my bag, despite the leaks. But I can also appreciate that when all is said and done, all that will matter are your loved ones.

So whatever you are doing, make sure you give your loved ones a big hug tonight, appreciate everything you have and be thankful you get to wake up tomorrow and enjoy life all over again.

Thankful

 

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Woooo I did it!

That was the 10K run on Sunday, where Mike and I ran for Beating Bowel Cancer in the Run to the Beat event in Wembley. It was our second 10k of the year, which in itself is shocking, as I never even thought I would do one, let alone 2 but it was a good goal to work towards. Now, I certainly wasn’t as fit or in as good shape as I was for our Bupa 10k, the training kind of fell by the wayside over Summer as I preferred to drink bubbly in the garden than go out and exercise, but I was pretty confident I could run the course.

That was until we received the race pack only to find out the course had some hilly parts, I was actually relying on a nice flat course thinking this would get me round quicker, but nope, wonderful hills awaited us. But still, I thought I could still run the 10k with hills, if a little slower.

On the Friday and Saturday before race day I had been to Surrey for work, so lots of travelling and walking (you can see the excuses forming!) and no time for short training runs. On race day, we were up at 5.30am to ensure we could get to Wembley in time. A quick banana and some water en route and we’re raring to go. A quick toilet stop for me (all Portaloos) only to discover my bag had leaked, this is a fairly rare occurrence, stoma appliances are pretty good and tend to be quite hardy. However, every now and then a leak happens and you just have to deal with it as best you can. Always having a change of bags and a clean pair of knickers on your person is usually a good idea (a clean pair of knickers is never a bad idea even if you don’t have a stoma, that and a toothbrush, you just never know!). Fortunately I had caught the leak before it got too bad and had a change of bag. Changing my bag in a Portaloo toilet is not something I wish to experience again, not particularly easy but I managed. I think it affected me psychologically though and something seemed to switch mentally despite my positive pep talk to myself. I also had a foot injury from a run the week before but was determined to run anyway as it didn’t feel that bad.

So, the race starts and we’re away, Mike is in a different group to me (the faster ones!) so I know he is well away before I have started. I did the first 1k ok, as it was all downhill and then it all just went horribly wrong. I had a stitch, I had to stop at 5k for first aid because my toes were covered in blood, I would like to be dramatic and say it was a huge gash in my toes caused by fast running but it was just a tiny cut that bled a lot! Then after that point it seemed to be all uphill, horrible steep mountains which just felt impossible. But I hobbled, jogged & walked and eventually got round. Perhaps if someone had yelled that there was a bottle of champagne at the finish line I may have got a sprint on, but it was just a few cheerers trying to encourage us slow ones (it’s a bit embarrassing) across the finish line. But at least I can say ‘Wooooo I did it!’

Mike did incredibly well, me, not so good, but I was determined to finish the course no matter what. I actually hated every minute of it but I think I may do it again next year, just to improve my time (which won’t be hard) and because it will also seem like a good idea at the time.

You will be relieved to hear that the champagne came out upon arriving home, followed by a very delicious burger, so all was not lost. Now, I have 7 weeks until the next 10K, and I am DETERMINED to do this one well!

homer

The dating game………..Part 1

The dating game is a tricky one and especially hard when you have something that makes you feel ‘less normal’, like an ostomy bag. I see quite often people asking the question about dating and when is it right to tell someone you have a bag or are suffering with an IBD such as Colitis or Crohns. The truth is that there is no right time, it is all down to individual circumstances and what feels okay for you.

I really won’t recount all of my dating stories as it may take an age and whilst I love to tell them, I am not sure my boyfriend Mike will want to read it in all its detail! Whatever our situation, we all have the horror dating stories and have all been through the mill when single but who would be without them? They are great to recount over a glass of wine with the girls, they hold funny memories and also make you realise what you don’t want out of a relationship! For example, there was the guy I dated who was a bit like eeyore, his chat wasn’t exactly lively and everything had a bit of a depressing tone to it, apparently he had a great time though as he wanted to see me again – I dread to think what he would’ve been like on a down day! Then the time I went on a date with a guy who worked at the gym I attended, after I told him I didn’t see the relationship progressing, he never spoke to me again – bit awkward when I would bump into him there, I thought I was taking the mature approach. Then there are the dates that should never turn into second dates but somehow do as you find yourself agreeing to it and then running out of excuses to use! I think my worst date was with a guy who was ever so persistent so I thought I would give him the benefit of the doubt and go out with him. Oh, it was awful, he was so boring and I really had no interest in him, as we were stood chatting I was practically sitting in the plant pot to get away from him. To get out of the date I said I was meeting my parents in a bar, he didn’t mind, he came with me (why??) so eventually I told him I had to meet friends at a different bar, this was so I could go home without him realising, however, said bar was in opposite direction to my home and he watched me go so I had to walk down to the pub anyway all by myself!

dates

So anyway, I digress but as you can see there have been some bad dates but there have also been some great ones along the way! But when it came to relationships (pre-Ostomy), telling them about my colitis was never something that featured, after all it was part of me but it didn’t define me and I saw no reason to tell them in the early stages. Sometimes I would be forced into it, such as being hospitalized 3 months into a relationship, kind of forces your hand a bit! As anyone with an IBD will know, mornings are the worst – it is like an explosion, anyone outside your bathroom may think there was a thunderstorm going on whilst trumpets play! It is horrendous. So trying to deal with that in a new relationship is awful, us girls do not like our men to think we use the toilet at the start of relationships, even going for a wee can be difficult, after all, what if they hear us and realise we are humans and not the non-toilet goddesses we have portrayed? Don’t even get me started on blowing my nose too! Having a poo is something we certainly don’t do in a new relationship, we will wait until we get home, or perhaps use a pub toilet if desperate (public places aren’t great but better than the boyfriends house) and as we exit, having been longer than may be appropriate for just a wee, we can use the excuse that we were on the phone! Men do not have this problem, someone I know (no names, she knows who she is) had a boyfriend, who gaily went off the toilet, newspaper in hand, and this was at the start of the relationship!! Bet men don’t agonise about when and where to go – they just go, and some are proud of the fact!

So, this situation is 100 times worse when you have IBD, there is no holding it in, no waiting until you get home, you need to go and you need to go now or there will be blood on the floor (and sometimes more).I have been in a relationship where there the toilet and bathroom are one room, this is the best situation – you can turn on the shower, poo in peace, safe in the knowledge he will be thinking you just have really long showers (actually, I am not sure a man would sit there and think about that), or run the tap if you have already showered to disguise any noise. Sometimes it just becomes easier to tell a person you have this condition and what can happen, it’s an embarrassing tale to tell as we are all a bit shy when it comes to talk of poo but it makes it easier for yourself in the long run.

I have a wonderful boyfriend called Mike, he is handsome, kind, loving and all other sorts of nice things and we have been together just over 3 years. Three years ago was my worst ever flare that led to my month long hospital stay which ended in my emergency surgery and my bag. I didn’t tell Mike about my Colitis until date 3, (dates 1 & 2 consisted of me barely eating and just praying that my intestines behaved). Mike mentioned about staying the night at some point, but given that I was in an awful flare I just couldn’t bear the thought of staying over at someone’s house. I decided to be honest with him rather than try and make excuses as to why sleepovers (separate bedrooms of course) were out of the question for the foreseeable future. It was a good job I did as a week later I was really, really ill and my whole nightmare began. We had a few dates in hospital, obviously I am such hot stuff in my moo cow pyjamas, attached to a drip or two with ever shrinking boobs and sticky up hair that Mike just couldn’t resist the lure of seeing me 😉 But as is to be expected, starting and maintaining a relationship whilst in hospital/recovering is difficult, so we kept in touch but nothing really happened for a couple of months.
So I was left in a situation of being ‘back on the market’ but now I had an ostomy bag to contend with, I also wasn’t sure if things were finished with Mike and I as I still felt it had potential, and I was sure once he saw me out of my pyjamas he might realise I was much better! I wasn’t going to stop myself from maybe meeting someone else but I also wanted to decide how I felt about things with Mike so I needed to give myself time. After a period of recovery, I was ready to hit the town again and so my sister and I would get glammed up and off we’d go. Then there came a point where Mike and I were seeing each other, but it was all very casual, you could say it was ‘complicated’ as Facebook would refer to it. I didn’t want to be unfaithful but then again didn’t know if I had anything to be unfaithful about. Honestly, life is far easier if you’re just honest and ask questions, but why would we be truthful and open when we can weave a complicated scenario for ourselves?! Anyway, back to dating, men may have chatted me up or made advances, shall we say, and this is going to sound awful but I would tell them I had an Ostomy bag thinking it would put them off and you know what – not once did it ever put a guy off, in fact the response would usually be ‘it doesn’t matter’ or ‘oh, so how does that work then?’, definitely not the responses I was expecting and so different avoidance tactics had to be employed!

I am not saying that some people wouldn’t be put off by it, I have not experienced that, and of course, if they were they weren’t worth it in the first place but it is not something you should worry about hiding. Don’t let it define you, have a date or two before telling them, but if it happened to come up naturally earlier on, then fine. It is whatever you are comfortable with. It’s a scary thought; after all, there is a natural feeling of thinking you could be setting yourself up for rejection, but better to find out early on. If someone is put off by it, it is a reflection on them not you, and that is true with dating anyone, illness or not. Mike has never really known me without the bag and it doesn’t bother him one bit, we are both used to it now.

And if I was single I would still go out with as much determination and gusto as before, the bag wouldn’t stop me at all, it hasn’t stopped me in any other area so why that one? Whatever your situation, if you are single, embrace it, enjoy it – even the bad dates, take them as experience, something to giggle about, but know that you are fabulous and someone else will think so too. And really, be honest, tell them you’re not interested even if they end up never talking to you again – it’s easier in the long run!

fish

Why I love my stoma……

Ok so the truth is I don’t always love it but most of the time I do. It’s a hard thing to believe, after all who in their right mind could love something that is essentially a bag of poo stuck to their belly? But for me, like a lot of other people it saved my life.

For some people, a stoma comes as a shock, it is the result of a freak accident, a sudden diagnosis of IBD or perhaps cancer. Sometimes (and not in all cases) the stoma is unwanted and incredibly difficult to come to terms with. But I consider myself lucky. My stoma ended years of suffering, illness, fatigue, hospital admissions, strong medications and embarrassing accidents to name a few. Nobody, no matter how sick, would wish or want to have a stoma, wearing a bag is the last chance saloon, something that perhaps you see as a possibility in the future but not something inevitable that will come at you in your prime. The truth is, we never really know what is round the corner or what fate awaits us.

This time 3 years ago, I was very sick, you wouldn’t know as I still worked full time in a stressful and full on job, had a social life and to the outside seemed normal. What people didn’t realize was that I was consumed with a mouth constantly full of ulcers, it hurt to eat even ice cream, I couldn’t even contemplate taking on the day unless I was stuffed with as many painkillers as I could take and just getting through the day would muster every ounce of strength I had. I would plaster a smile on my face, wear my high heels and then cry in secret when I took a painful bite of one of the only things I could bear to eat (banana),only for seconds to pass before an emergency dash to the toilet to expel what little was left inside me. I was constantly starving, I was so hungry I would cry and yet just the smallest morsel would send me into spasms of pain and hours on the toilet. But even then, the thought of a stoma terrified me, in fact I didn’t really know anything about the ‘bag’ (3 years ago there wasn’t the positive publicity we now see) I assumed it would be like a hospital drip where you had to carry it around with you on a pole on wheels!! So when I was told I would be receiving infliximab by the Gastro Doc I was over the moon. Infliximab is so strong and powerful with so many potential side effects that you have to have tests for TB, Hepatitis and a myriad of potential underlying diseases before it will be administered. I was told there would be an 80% chance of not needing surgery. So when days later I was told surgery was my only option I was distraught. How could I wear a bag, it would be awful.

However, by the time the surgeons came to see me I was in so much agony I distinctly remember saying to them “I don’t care just get the f***er out”! Eventually I awoke from Emergency surgery with two bags (one was a mucous fistula, more of that in later posts) but instantly felt better. I was in agony from the op but could tell that my ravaged, poisoned intestine had gone! It was days before I was allowed to eat properly again, which was torture but when I could it was absolute heaven!

So why do I love my stoma?

1) I can eat anything I want without fear of mad loo dashes, except sweetcorn, it’s the devil for me, I love it but it’s a small sacrifice (missing the large intestine means certain foods can be more difficult to digest and can cause issues but it’s all individual).

2) I can exercise again – ok not so much of a love as I don’t really like exercise but there’s no excuses and the sky’s limit if I want!

3) I can wear white and whatever else I like (yes with the aid of some amazing albeit expensive knickers!) but I can still wear those things. I mean who would wear white if the fear of sh*****g yourself was always at the back of your mind?!

4) I can have a relationship, yes you can date with a stoma, it doesn’t seem to put people off. But the best thing is no longer (as happened to me) having a date over for dinner, excusing yourself to use the loo only appearing half hour later, pale and weary! Emptying the bag takes seconds so no embarrassing ‘you’ve been a while’ moments.

5) I don’t have to find a nice toilet to poo in! Obviously nice toilets are a bonus, but it’s not like having a poo, where (especially us ladies) would rather do in private and comfort, but a practical task, that can be done almost anywhere. Oh, and no more waiting until I’m home to poo, nope it’s on the go now!

6) Travelling – I can travel, on planes, trains and automobiles! No worries of being on a plane, feeling an urge to go and yet seeing a dreaded queue. As yet, I have not had to empty on a train toilet and I hope I don’t have to, but I still could, no fear about being stuck in a god-awful train toilet for ages and risk missing my stop! Before travelling I make sure I empty, eat light before hand, take a couple of Imodium and away I go!

7) I am free of medication, fatigue and pain which is just amazing. Ok, so occasionally I don’t chew properly or I eat something that’s difficult to digest and I may get a ‘blockage’ which is painful but manageable yet it’s still better than before.

There are several more reasons but I realize I’ve chatted enough so maybe I’ll leave you wanting more! 😉

But as I said, I am lucky, suffering for so long made me appreciate my stoma. But if anyone is facing a similar situation, it isn’t all bad and you can have fun with it (yep you can, but more on that later!)

So I love my stoma, really for the freedom it gave me and the fact I can now enjoy life – which is really the important thing 🙂

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