Coping with cancellations

Hi readers,

So on Tuesday I was meant to be having my re-scheduled procedure which had been cancelled already around 6 weeks ago. On Monday afternoon, I received a voicemail message whilst I was at work telling me again that my surgery for Tuesday had again been cancelled due to the “bed situation” still not being resolved.

Having to go through the mental process of keeping myself strong and seeing a light at the end of the tunnel with the one cancellation, let alone to experience the same thing again is something I would not wish on anyone. I was absolutely gutted (no pun intended) and still am.

Dealing with pain is absolutely exhausting; not just physically, but mentally too. You’re at a low before you even have to start the day ahead of you, and yet you still have to go out and fight every day. Having a goal to work towards like surgery in a way motivates you. You know that after the operation and recovery period that, chances are, you’re going to feel significantly better and that the pain will decrease, if not disappear altogether. Mentally, you tell yourself this, and somehow you find the strength to keep up the fight and set your energy reserves in every way to keep on pushing as hard as you can until you have that relief. Having that hope suddenly ripped out from underneath you is a feeling I can’t explain but one of helplessness, frustration and upset. After I received the voicemail message, I rang the hospital back and they explained further that they are unable to give me another date because of the fact that the lack of beds situation has still not been resolved even six weeks on. I expressed my concern and the pain I am having to go through each day and the man explained that he is worried about my situation, but until he can give me another date there is nothing that can be done. Even then, there’s nothing to say that my procedure will not be cancelled for the third time. I broke down at my desk at work and was distraught that I had been taken off the theatre list again; that light at the end of the tunnel once again had just been extinguished right in front of my very eyes, and there was nothing I could do as the situation was out of my hands. Not often do I break down and cry with all this. I have had bowel problems for as long as I can physically remember in my life so I am fully aware of a lot of the situations and trials that it throws at you, but I cried my eyes out uncontrollably for about half an hour straight. Everybody has their limits, and in that second, that was mine.

I am fed up of feeling like I am passing glass through my stoma. I am fed up of having to rely on painkillers which only make me feel disorientated and drowsy and unsettled. I am fed up of having to overthink food and whether I eat or how much I eat, and what I eat. I am fed up of the sore skin around my stoma due to the constant swelling and change in size and shape of my stoma. I am fed up of the unsettled stomach I experience and being woken up in the middle of the night due to horrendous stabbing pains and cramps down my back and around my stoma. I am fed up of the inconsistency in output due to the blockages I keep experiencing; there is either very little or suddenly what I can only describe as torrents of output after severe cramps. Most of all, I am fed up of being given hope and then just being let down by what is supposedly meant to be a health service… What sort of service is that?!

I will be hearing back from my stoma nurse tomorrow once she has spoken with my surgeon and then I will take it from there as to what the next course of action is. For now, I am working as much as I can, taking it easy when I can and surrounding myself with the love and care of the genuine people in my life. My family and boyfriend are absolutely incredible beyond. Without them, I would be struggling so much more.

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Adapting to change

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Change can be a scary thing. Change can be positive. It can also be negative. Change can be the seasons. Change can be choosing to do your hair differently just because. It can be because you feel you have to. Change can be tiny, or it can be huge. Change can separate who has been there for you all along, and who never really was. Change is a risk. It can petrify you more than you ever thought possible. Change can be through choice. Change can make you or break youChange can be the day turning to night, or the sun bringing illumination to the darkness on a new day. Each day is a chance to change. Most of all through my experiences, I have learnt that change can sometimes be a one-way journey despite how petrified you are. In this sense, change is inevitable and has to be embraced, before what is the present becomes no more and is the difference between waking to see a new day or not.

Just over three and a half years ago now I had my surgery. People say that in time things get easier. I agree, or at least, things seem to get easier. Maybe this is because we learn to adapt more and learn that we must make the changes to move forward and progress. I am certainly not the type to admit defeat, but change sometimes in many aspects of life can make you feel like you are really taking on more than you can deal with and sometimes makes you want to hide in bed, wrapped tightly under the covers, in the hope that time will slow down and somehow things will not seem as daunting.

I sit and reflect on the last few years and see just how far I have come and the things I have achieved. I have taught myself to tolerate food properly again and managed to keep food consistent, although sometimes this can still be harder mentally than it seems. I can enjoy food again, and have that bag of sweets if I feel like it and not dread that pain will follow. Some foods I have to avoid, but this is a huge improvement on not being able to tolerate anything. I have visited many places that would not have been possible before. I have stood in the shower for longer than necessary just to keep warm, but for this time through choice, not because I dread getting out because the slightest bit of cold gave me crippling stomach pain and I did not know how much longer I could stand from being so weak. I have learnt a lot about my body although I am still learning when to know when enough is enough and listen to my body, but maybe that is just because I’m stubborn (and maybe a little stupid!). I have managed the last few years without any maintenance medication or steroids; besides anti-depressants and my pill I am medication-free. These are just a few of the things I could mention which I find in themselves a big achievement.

Physically, I have had to adapt to the changes inside my body and outside. I have found the biggest challenge for me to be the physical changes. Even now, I sometimes get my down days or moments where things run through my head about what it would be like to not have a permanent ostomy bag, and I wish I was “normal”, but then I wonder, what exactly does define “normal?”. I still sometimes have to shake my mindset away from just seeing my scar and bag when I look in the mirror, and remind myself that I am more than what my surgery has meant for me. I sometimes feel disgusting and worried if I have to explain to somebody new to me about my bag, but regardless of how I feel and how anxious I get and upset sometimes, why really should I feel disgusting? I am more than an ostomy bag and a scar, I am a person, and that does not define who I am. I have to tell myself that over and over some days. I see so many models and people in the media that make me feel so insecure because of how my body has changed, but then again I think the media is hugely responsible for a lot of our insecurities today in society. Ostomy bag or no ostomy bag I think this would still be the same. So many of us feel we have to live up to the ‘standards’ set by the media and all the airbrushed photographs that make people feel like that is how people actually are in reality; that that is somehow ‘perfect’. I see so many models with flat, toned stomachs with no scars or an ostomy bag and part of me inside cries to be like that, because I do not see how how I am could be portrayed as beautiful, but then I just ask myself, what is beauty? Beauty to me has many senses. But things that help to define beauty are the stories behind the people, the challenges people have faced and overcome, eyes that have cried many tears yet people still manage to put on a smile, the battle scars, the courage, the determination and the bravery. Beauty is not just about what is straight in front of our eyes at first glance. Everybody has a story. Everybody has a unique story, that has shaped them into that person they have become.

I still struggle with sitting in a quiet classroom with other people, or talking one-to-one with somebody at work and worrying about my stoma making a noise. It gives me clammy hands and makes me tense up the second I feel my stoma needing to pass wind, and I automatically go to shield what noise I can by placing my arm over my stoma. It gets me down some days that I still struggle with narrowings and I have to dilate my stoma twice a day. It makes me sad when I’m having one of those days that I cannot wear tight fit dresses without having to be more cautious about how fast my bag is filling up to stop the over obvious ‘bag bulge’ appearing like I’m pregnant on one side of my stomach. I struggle with my depression sometimes, I would not wish it on anyone. I struggle with getting my head around sharing a bed with someone and my bowel relaxing and becoming really active when I sleep and being really noisy. I struggle with the idea of sharing a bed with someone then waking up in the morning for cuddles with them and them putting their arm around me and bam! there’s this full bag of wind and waste on my stoma like a small balloon… really does not make me feel in the slightest bit attractive. Intimacy does bother me in that sense, the thought of suddenly having to empty my bag or having to attend to a leak on the odd chance it happens. I just have to remind myself that I just have different plumbing now as I call it, and that even the Queen uses the toilet and farts and no, it does not smell of roses! I guess as far as friendships and relationships are concerned, then as I have always told others, if somebody cannot learn to love and accept me for the person I am just because I pass waste out of my body differently, then they are not worth the time or space, and karma someday may visit them. All that being said, I am very lucky to have met those close to me at the moment that do make me feel beautiful, special and appreciated and have opened my eyes to being able to smile and laugh about having an ostomy bag and the little dramas that come with it! I would not deny somebody of being accepted and loved for the person they are just because they are “different” and have had to go through a whole load of crap (no pun intended!).

This post just shows that even three and a half years after my surgery, it is still a journey for me that I am not 100% comfortable with and that I am still learning about it and how to adapt in many aspects of my life. But what it does also show is that I am here to embrace it as best as I can. If it wasn’t for my bag then I would not be breathing or writing this now. I can do so many things now that I could not do for the majority of my life. I do not remember anything of my childhood besides being poorly, so surely the fact that my bag has given me my life means that I can try the best I can to make something truly incredible of my adulthood and work hard now I have the ability to keep pushing myself. I have a job that I love in a career that is so promising and rewarding that I would not have even had the energy for before. I go to college and do exams that I would not have been able to sit through before without running to the toilet or feeling too faint. I can do so many things that I could not have done before. That in itself is a gift – having my life.

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Until next time,

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Ostomy odour – what to do?

In this post I will be explaining what to use to combat the smell when emptying your bag; particularly useful for staying away or for making emptying your bag in a public toilet for example less of a worry.

Let’s face it, it’s waste from our bodies, so ostomy or not, it’s not going to smell of roses! But this is something that worried me when I had my operation. I was worried whether the smell would be worse, and if I would actually be able to stay at a friend’s or away without being worried about emptying my bag and leaving the smell behind.

In my experience since my surgery, I’ve generally found the smell to be stronger than before surgery, especially with certain foods. Certain foods contribute to causing a lot of gas and/or odour as a result of eating them. Everyone is different, but I find that fizzy drinks, indian food and anything with a lot of rich flavour in increases the amount of gas I get. Fizzy drinks are the worst for me, sometimes to the point where it makes me uncomfortable and causes my stoma to make quite a lot of noise, so I usually save myself the hassle and leave fizzy drinks out. I also find eggs, onions and a lot of frozen processed food such as fish fingers can give me an increase in gas. Odour wise, it’s pretty much the same foods as what I have mentioned regarding gas. I avoid eggs as a rule and only have those others mentioned once in a while when I feel I can cope with it 😀 Foods that give me problems because of my narrowing which cause me discomfort I tend to just avoid altogether and the ones that come to mind right now are; beans, lentils, most vegetables unless they’re soft and without skin, steak or casserole beef, nuts, too much of stodgy food such as wotsits and mash potato, and wholegrain rich foods.

So what do I use to help minimise/get rid of the odour in my bag when I empty? I use Salts No-Roma Ostomy Appliance Deodorant. I put a little bit into my bag when I put a new bag on and after each time that I empty my bag. The product is handy as I use the 227ml big bottle for at home, and the small 27ml bottle to take in my handbag when I go out or when I stay away from home. The different product sizes are great for convenience. I just leave the big bottle next to the toilet at home for easy use when I empty my bag, and put the small bottle in the inside pocket in my handbag. I have used this product for most of the time I have had my ostomy and I find that it works brilliantly and 99% of the time gets rid of all odour. This definitely boosts my confidence dramatically and enables me to go places without worrying about having to empty my bag and leaving a smell behind. The 1% that I have found it does not work in every single time is if I use the drops overnight in my bag, but the odour that is there when I empty my bag is nowhere near what it would be without usually, so this does not really phase me. I’ve been told by family members for example that if you can’t leave a smell in a toilet, then where can you?! Which is true, but I’ve found a lot of people with Inflammatory Bowel Disease for example and those who have an ostomy feel a lot more conscious about leaving a smell behind, me included. If I could have found a product that helped me keep odour to a minimal or get rid of odour completely before I had my bag and I still had my large intestine, that would have been great but the only things I found accessible were air fresheners which never worked in my favour. This is why in a way I find having my ostomy more convenient, as you can treat the smell before you empty the waste.

I hope if you are reading this then you are well, and feel free to drop me an e-mail at: ostomismnotpessimism@yahoo.com or leave a comment if you need any advice or a chat and I will do my best to help! 🙂

Before I finish this post, I’d like to recommend another blog for you to check out by the lovely Hattie. This is the link to her latest post, which I feel really brings home the message that we really have to listen to our bodies and keep pushing for medical help if we feel something really is not right.:

http://morethanyourbag.com/2015/02/27/why-young-woman-need-better-medical-attention-stop-blaming-womens-troubles/

Sadly, it seems cases like Hattie’s have become increased or we have been made aware of them more. It is vital that research and awareness carries on enhancing so that cases like this can decrease.

Thank you for reading! 🙂

Until next time,

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Amazing news, remembering and reflecting.

Hello readers!

It’s been quite a while so I do apologise for the lack of posts. Life has been very busy, and very different to what it was around even half a year ago, but for some major good reasons; mainly my health and career.

Last month I went for another surgical dilation to my stoma and an ileoscopy. I have had problems with my stoma becoming tight and narrow and having spasms just inside my stomach before it exits my skin since about a year after my operation. These episodes have not really had much pattern and had become quite nasty when they just suddenly came on with no warning out of nowhere. It was literally how I can only describe like passing glass. I have been dilating my stoma (widening it) by inserting a medical rod down it for about the last half a year on and off and things seemed to get better for a considerable amount of time so I stopped doing it. A few weeks down the line it was back again, but worse, so through to the hospital I went after work and got some better painkillers sorted out and given another dilator to use twice a day for around 2-3 minutes each time. About a week later, I got a call from my stoma nurse saying I would need another surgical dilation. The dilation itself I can remember most of; the sedation didn’t seem to make it less painful… I just did not feel as bothered. Then afterwards it made me feel drowsy, spaced out and exhausted for a good few days after alongside being sore. When they did my scope at the same time, they found ulcers & my heart sank; I did not want to face Crohn’s so severe all over again after having to go to such extremes and nearly lose my life a few years ago to battle it. My surgeon took biopsies, and needless to say, the next few weeks were a very anxious wait with my head all over the place. I tried not to think either way or read too much into it, so not to set myself up for a fall or the opposite, but that is easier said than done!

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Last Friday was a hugely emotional day. I went to hospital and saw one of the surgical registrars for my results. Since the first time before I was 7, I have finally gone months without a Crohn’s Disease flare. The ulcers in my last scope and biopsy were non-Crohn’s and have died down & I got told that my Crohn’s Disease is in remission; it is NOT ACTIVE! 🙂  I have waited since before I was 7 to nearly 23 to hear this news & never believed the day would come; I am still in complete shock.  I am the healthiest I have ever been & am living my life without pain & intense struggle every day.  Life is not without problems, but if I can get through what I got through when I had my operation and for years before as far as I can remember, then I’d say I am already doing a considerably good job. Since my life-saving operation in August 2011, it has taken me a lot of effort and struggle to get to where I am now, but it has all been worth it. Having to dilate my stoma is not the best thing in the world and I would rather not have to, but so what? It’s nothing compared to what I have had to go through before and it could be much worse. If that is what it takes to keep myself away from pain and surgery then so be it. I get dehydrated easily as well, but I am drinking a lot more water and making sure I stay on top of that as much as I can. I am medication free for my Crohn’s! 🙂 It is still so hard to believe. It is so amazing! 🙂 I do have my days and situations where I have not fully come to terms with it yet, but even a few years on it is a learning curve.

I couldn’t have done it without those close to me; you know who you are & I could never thank you all enough.

I would also like to give a special mention to my Uncle; my inspirational warrior who I miss so much every day – I wouldn’t be as strong as I am now without you & your courage & bravery. His determination to live life even dealing with the horrible struggles of IBD and beating cancer was truly inspiring. We lost you so unexpectedly two years today & in all honesty, it feels like a lifetime since I saw that warm smile of yours & I think about you so much every day. Without a doubt, I would have crumbled long before now without your amazing strength that you showed to me in the hardest times of your life. Even though I haven’t laughed with you or hugged you in a few years, that strength and courage that you gifted me with still lives within me & comes with me everywhere I go. I know you always believed in me, and whether it be in health or work or life in general, that belief still lives on and pushes me to take the extra steps I need to take, no matter how hard or scary they may seem. You will always be my hero & everyone remembers you for your smile, how you made everyone chuckle & how you were one of the nicest & genuine people anybody could have the pleasure of meeting. My hero is an angel ♥

I will do a post soon about how my career has changed for the better and will get back into blogging more regularly.

Thank you for reading.

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Until next time,

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Bravery.

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There are so many people at the moment; a few of those close to me, who possess such bravery & really inspire me. There are people who refuse to be beaten and keep smiling when it seems like the hardest thing possible for them & that in itself is just so inspiring beyond words.

Seeing such courage & braving is exceptionally amazing, especially when people have every right to complain yet carry on regardless and make the most of the cards they’ve been dealt so to speak & it is really quite thought-provoking.

When was the last time you woke up on a morning & felt happy to just lie there and feel the covers above you? When was the last time you woke up and felt grateful to be alive, despite the fact that the rain might be hammering down outside & a mentally busy day at work is ahead of you? When was the last time that you actually woke up and felt grateful to be able to work? When was the last time you woke up and felt grateful to not be in as much pain or no pain at all? When was the last time you felt grateful for being able to eat? When was the last time you felt grateful to just be alive? 

It can be so easy to take things for granted; including all those things above. Even some of those things, some people unfortunately don’t have. Some are physically unable to work no matter how mentally strong they may be, some are unable to eat, some have to wake up & face their lot that day that maybe their pain is just the same as yesterday, and sadly, sometimes their pain has increased. Since my operation, I wake up every day feeling so thankful for not having that degree of pain that I experienced pretty much consistently for 15 years of my life pretty much from as early as I can remember. Even if I have aching legs or a bit of a stomach ache or my stoma isn’t 100% happy, I still feel grateful that I am able to get up & go about my daily life pretty much every day. I feel grateful every time I eat, for actually being able to eat with no pain or not even being able to face food. Never again will I take something that may seem so simple and ordinary, such as eating, for granted.

Be thankful for the things & people you have. Everyone has problems and their own issues, but it is becoming much too apparent in society these days that more people are increasingly taking things for granted, such as good health. Yes, we all have a right to complain! We wouldn’t be human if we didn’t, we all have emotions and we all have trying times. Yes, we have all been guilty at some point of taking things for granted. However, we all possess it within ourselves to just pause, breathe and reflect for a moment and remember the things that we have to be thankful for, no matter how small or large. For those of you struggling, hold your head up high & smile & remember that things will get better & pain does end. Let’s hold a thought for those people because I, for one, am very proud of every single one of you that has to overcome such painful and unfair barriers daily, often or even at all.

Here is to the inspirational people out there; keep smiling.

 

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Video #2: Preparing for Planned Ileostomy Surgery

**Update: My new e-mail is ostomismnotpessimism@yahoo.com as I could no longer access the e-mail included in this post/video further down**

Hi readers!

Today I did my second video: Preparing for Planned Ileostomy Surgery.

You can watch it below:

Please remember that the video is from my experience only and what I have learnt from others, so your experience might not be exactly the same! It’s different for the individual. Also, please consult a medical professional when necessary as this is just my own point of view and take on it from what I have been through in my life with Inflammatory Bowel Disease.

I hope you enjoy watching & please leave any comments/questions you may have either at the end of this post, on my YouTube or by e-mail at: ostomismnotpessimism@outlook.com! 🙂

Until next time,

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The Inspirational Blogger Award!

Credit to nuggets4nobles.com

Credit to nuggets4nobles.com

A HUGE thank you to the lovely Chloe from Dazed Fashion for nominating me for the inspirational blogger award; it means a huge lot to me! Please be sure to check out Chloe’s blog! She has some great reviews of products and some fab outfit ideas ranging from casual to outerwear, and from cute to well put together outfit ideas for nights out. Chloe’s blog also has some great beauty posts and useful make-up reviews and tutorials.

UPDATE (08/05/2014): Another MASSIVE thank you to the amazing Carrie from Cup Of Tea as well for nominating me. It means such a lot to know she nominated me too and enjoys reading my posts. You can see my nomination for this inspiring and lovely lady below.

I have been blogging for nearly 3 years now and I love it. My older blog is http://www.staceystoma.wordpress.com. I love to help others and provide support for those affected by Inflammatory Bowel Disease and/or bowel surgery and like the fact that despite all my suffering, I can perhaps make somebody else’s IBD/surgery experiences a little easier (whether that be the person themselves or a relative/friend).

 Here are the rules:

  • Thank and link the amazing person who nominated you
  • List the rules and display the award
  • Share seven facts about yourself
  • Nominate fifteen other amazing blogs and remember to comment on their blogs to let them know you’ve nominated them. (provide a link to your post)
  • This rule is optional you can proudly display the award logo anywhere on your blog e.g. on your sidebar and also follow the blogger that nominated you.

Seven Facts About Me

  1. I am not really a huge chocolate fan unless it’s Milkybar 😀
  2. My favourite bands are You Me At Six, Young Guns, 30 Seconds To Mars and Mallory Knox.
  3. We have 2 dogs called Suzie & Bobby.
  4. My brother is younger but a lot taller than me!
  5. I love medical programs; anything from Holby City to 24 Hours in A & E and so on…
  6. I have an obsession with floral print.
  7. “Fall down seven times, stand up eight” is one of my favourite quotes.

My nominations

I do not know 15 blogs well enough in detail to nominate so I am just going to nominate the blogs that I know well enough and enjoy reading at present.

1. I obviously nominate Chloe, who I have mentioned above & why, who nominated me.

2. Carrie from Cup of Tea – I find her posts a great read and find that her journey with Ulcerative Colitis is very inspiring!

3. Thomas from The Chronic Adventurer – he is very inspiring.

4. Hayley from BedEleven – she is one of the loveliest people I have had the pleasure of speaking to since my surgery & is very inspiring.

5. Emma from My Beautiful Messy Life – I really enjoy reading her posts about being a journalism student and having Crohn’s and an ileostomy.

6. Meranda from MerandaRoben – I love the IBD posts she writes & the awareness work she does.

7. Nicholas from Osto Life – Really inspiring and good awareness blog.

8. Last but not least, Beth from Polished Couture – I adore her shopping haul posts especially & think her blog is really well put together in general. I love her ‘haul’ posts and beauty favourites.

So there you have it guys! My nominations for The Inspirational Blogger Award. Thank you so much to Chloe & Carrie once again.

Until next time,

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