I wore purple for World IBD Day! Did you? 

Hi readers,

Yes, I wore purple for World IBD Day as you can see! 🙂 My Dad wore a #GetYourBellyOut wristband for the day, my Mum wore purple to work and quite a few of my friends painted their nails purple! I also wore my Crohn’s Awareness badges and mentioned the fact that it was World IBD Day at work and explained to people what this was if they didn’t know. It was very touching to get such positive feedback off people I work with and a few of them made the comment that if they had known more about it in advance they would have worn purple for the cause, so next year, I’ll be making sure the purple message for World IBD Day gets to a lot more people as much as I can! 🙂 I also had a few people ask me about my badges that I was wearing so they too helped to raise awareness. It always amazes me these days just how many people have now actually heard of IBD when it is mentioned and sadly, how many people actually have a relative or friend who suffers. It’s also nice knowing that I have some great friends who will do their bit to support me by just doing something as simple as painting their nails and donating £3 for the day like some of them did.

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You can do still donate to such a good cause at any time of day or night & of course you can also purchase one of the lovely purple #GetYourBellyOut bands!

I hope you are all okay & please do not hesitate to email me at: ostomismnotpessimism@yahoo.com if you need someone to talk to or have any questions to ask about IBD. Also, feel free to leave me a comment about what you did for World IBD Day! 🙂

I’m appreciating the rest this long weekend and I’m not back in at work until Tuesday so I’m enjoying a few days with my boyfriend & I went to Sheffield with my Dad on Friday night to see The Smyths, a tribute band, for the second time who were excellent! I’m struggling at the moment with fatigue, mouth ulcers, joint pain (especially my hips) and keeping myself upbeat. Everyone has their down times though no matter how strong they may be, and my boyfriend keeps reminding me that sometimes it is okay not to be okay. I am so lucky to have such an understanding and caring other half.

Sometimes, she thought, courage was simply a matter of putting one foot in front of another and not stopping.

—   Anita Shreve, The Pilot’s Wife

Until next time,

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Paint the world purple for World IBD Day!

Hi readers,

So as many of you may already know, tomorrow is World IBD Day.

Worldwide, around 5 million people live with Inflammatory Bowel Disease and it seems to be becoming more common and/or more talked about as time goes on. In the UK alone, there are around 300,000 of us who have IBD. It also seems to be becoming more evident about the vast span in ages that people start showing signs and/or are diagnosed with IBD. For me, I was diagnosed at age 7 and I am now 23, but I started showing symptoms before my diagnosis for a good number of years.

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Symptoms are not just the things that make it a “toilet” disease. IBD can take over the whole body in different ways and in different severities, and even when somebody is not classed as having active inflammation (also know as being in a “flare up”), they can still suffer from long-lasting symptoms, for example, from the effects of medication on the body that has built up over the years. I do not have active Crohn’s Disease, but I do suffer from the effects of what steroids have done to my body, and I find stress extremely hard to deal with at times, alongside having quite a poor immune system down to being on a lot of immuno-suppressants for getting on thirteen years. Fatigue, joint pain and mouth ulcers are something that are really proving to be troublesome at the moment. Joint pain mainly occurs in my wrists, knees and my hips. I get recurring mouth ulcers as soon as I start to feel a little bit run down. I also have the on-going problem of my stoma having abdominal spasms which cause narrowings behind it, sometimes for up to weeks on end with little or no relief. Inflammatory Bowel Disease is by no means a short-term thing or something that should not be taken seriously, & something I find myself wanting to repeat time & time again on behalf of all the other sufferers is that just because we look okay on the outside, it does not mean we are okay on the inside. Many of us have become experts at maintaining face when we are actually falling apart inside and struggling to see the light. It is exhausting.

Even though Inflammatory Bowel Disease is a frightening & challenging disease, the expanding awareness that it is receiving is fantastic and the support that the IBD community gives to others in similar positions is so inspiring and warming. I have made many friends due to this illness and even though it is not something that I would ever wish on anyone else, it is nice to know that you are not alone and that people do actually understand. I have found that a lot of people with this illness would do anything to make others smile, maybe because they know what it is like to have been in a bad place and may have been alone with little support or understanding from those around them at one point. This in itself is so amazing and inspiring that even people who feel like they do not have much strength themselves can find it within them to help those others.

Nationally, there are a number of landmarks that are going purple tomorrow in support of World IBD Day which is a huge and great step for the IBD community. These landmarks include Blackpool Tower, Gateshead Millennium Bridge and Leeds First Direct Arena as a few examples.

So what can you do to raise awareness and/or money for World IBD Day?

  • WEAR PURPLE! 🙂 I will be wearing purple to work tomorrow, as is my Mum and my Dad will be wearing one of the #GetYourBellyOut awareness wristbands in support.
  • Share World IBD Day related info and get involved on social media such as Twitter – #WorldIBDDay and #PurplePower.
  • Donate as little or as much as you want to Crohn’s & Colitis UK. It’s as easy as texting “IBDA99 £(insert amount here)” to 70070.
  • Do your #GetYourBellyOut selfies and join in with showing the belly support! You don’t have to have IBD to join in.
  • If you have a stoma bag, maybe ask those around you to wear one of them for a day so they can gain some insight into what a day feels like for you. This is something my boyfriend did with me recently, which meant more to me than words could ever say.

    My boyfriend wore a stoma bag for the day to get an insight into what daily life is like for me & to show his support ♥

    My boyfriend wore a stoma bag for the day to get an insight into what daily life is like for me & to show his support ♥

  • Obviously with more time and planning, you can plan a fundraiser; this could be anything from a sponsored silence to a sponsored run, or a sponsored read to a sponsored skydive for those who are really daring! This does not have to be done on World IBD Day; anytime is as good as any to raise money and awareness.
  • I will also be painting my nails purple! 🙂
  • Have a collection box at work.

There is currently no cure for Inflammatory Bowel Disease, but we will not stop hoping or fighting. Raising awareness and funds can help contribute towards many vital elements in the IBD world such as funding medical trials and research, helping to train IBD nurses and support services, and helping to get medical supplies such as stoma bags to less fortunate people worldwide. These are just a select few that need continued support so that the IBD community can carry on moving forward and hopefully one day find a cure and beat IBD for good. Having severe IBD myself which led to my life-saving operation and having lost my Uncle due to complications with IBD, it is as clear as ever that we should not stop raising awareness and fundraising until we have better treatments and finally get that cure. I would not wish on anyone what I have gone through and what I go through, and I would not wish the pain I feel through losing my Uncle on anybody either; I miss him more than I could physically ever explain and he is a major part of the reason why I carry on fighting as I do now. Even though he is not with me physically, his love and inspiration always lives on in my mind.

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We are warriors. We do not quit. We will fight. We will support one another. We will let the tears flow then half an hour later in public, bounce back with a smile. We will cherish every moment where we are not in pain. We will cherish a good night’s sleep and enjoying food when we can. We will cherish life… We will cherish life purely because we know the true harshness that can be reality of having no quality of life due or having experienced our lives hanging in the balance.

We will face our fears, because are fears are not going to stop us facing our future ♥

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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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It’s beginning to look a lot like Christmas…

Hi readers!

It’s high-time for another fashion post.

With Christmas fast-approaching, I have decided to do a blog post featuring some outfit ideas for Christmas fashion. I have included my ideas for ladies only, but if you are a guy who is struggling with a stoma and wants some ideas or even just a talk (ladies as well, of course!), then feel free to drop me a comment at the end of this post & I will get back to you.

Christmas can be a nerve-racking time for those who do have an ostomy bag for many reasons, not just finding something to wear. Personally, I know just how much of a difference finding some clothes that make you feel better about yourself can make. Sometimes, especially for new ostomates, it can be the difference between them not going to an occasion/gathering and going. It is a hard concept to get your head around when you go through such a change to your body, and can feel really overwhelming if you do not know where to start. A lot of people wonder things such as:

1.Will what I wear hurt my stoma? 

Very highly unlikely.

After having surgery, I’m sure you are very good at noticing when you may be starting to feel discomfort or pain. If anything does start to hurt, then you know something is wrong, but generally the rule I follow is as long as there isn’t a direct, tight pressure applied to my stoma so it is almost suffocated, then I should be okay. I do not wear really tight ‘bodycon’ things personally anyway, as this causes other problems such as bag leaks. I also swear by Comfizz stoma support products, as I’m sure you have seen me mention on other posts 🙂

2. What if I have an increase in stoma output and I can’t empty my bag straight away?

Go for something looser fit & remember the Loperamide (Immodium).

To feel the most comfortable when my bag is more active, I tend to go for tops or dresses that are the skater style. That way you get the gathered, tighter bit on the top down to under the bust, then the floatyness downwards of the garment to accommodate for any bag bulges. I find skater-style garments are ideal for giving me that bit of extra confidence as they allow me to be less paranoid about others noticing if I am having a day with increased output. Looser garments with busier patterns can also help detract the eye away from bag bulges. Also, remember to take some Immodium to help slow output down.

3. Will others be able to notice my bag through my clothes?

Other people are not as aware of it as you, so they are not too likely to notice it. There is plenty of stoma support-wear & are plenty of outfit options you can go for to help give you that extra confidence boost & where your bag will not even be slightly noticeable.

I rely heavily on the Comfizz stoma waistbands to help keep bag lines/creases & bulges under my clothes to a minimum, whether wearing tighter or looser fit clothing. I’ve also been told by my family etc that having an ostomy bag myself obviously makes me more conscious of it, because I’m the one who has it, and that they never notice it in any outfits I wear.

4. Will I still be able to wear the clothes I love & clothes that are in fashion?

Of course! Having a stoma bag does not limit you, it gives you the life you could not have before, as well as the choices. You can wear the clothes you love, and even try new clothing ideas you have not been able to try before from being too poorly to go out, for example.

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Here are some tops that I have found that would work great for Christmas wear. To give yourself that extra bit of confidence with tops that are a bit more basic like number one, try high-waisted garments such as black high-waisted trousers underneath to help keep your bag under wraps as well as a stoma waistband underneath. The glam neckline around this top makes it ideal for the Christmas season. You could finish the outfit off by going for some silver kitten heels with a matching glitter, silver clutch for example. Also, don’t be afraid to try bralet tops like number 3 with high waisted garments like the trousers pictured with it.

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The sequins theme is a big love of mine that always makes me feel festive, glam & glitzy 🙂 I’ve picked out some of my favourites above. These outfits are great for concealing your ostomy bag as all the sequins will detract attention away from any lumps or bulges that may start to appear from your bag as your stoma works. I personally love how sequin garments catch the light & have a few sequin garments myself. The jumpsuit (number 5) is a pick of mine that I absolutely adore. I would team this up with some black glitter heels or matching green kitten heels and a glittery green clutch bag of that shade.

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Last, are my picks that I absolutely love from everything I have seen shopping around the internet. The clothes I found all are from boohoo.com, the shoes and necklace are from newlook.com and the lipstick is from Avon’s long-lasting range, which I use everyday.

Thank you for reading! & don’t hesitate to drop me a comment or message.

Happy Christmas shopping! 🙂

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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#WorldIBDDay! ♥

Happy World IBD Day everyone!

Just a short post today to show you all my outfit for the day:

IMG_7309Proud of my abdo-battle scar and bag and love this t-shirt! I also love my badges that I got off Zazzle (one for my Uncle and one for awareness as well):

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Also, if you can, please donate just £3 to Crohn’s and Colitis by text:

Do your bit for World IBD Day!

Do your bit for World IBD Day!

The amount gets added on to the end of your phone bill so no bank details are asked for. This also ties in with the #GetYourBellyOut awareness campaign on Facebook and Twitter which anyone can take part in – IBD or not & ostomy bag or not! 🙂

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Here’s just a little snapshot of my IBD journey. To have it from the age of 7 definitely makes for lots of stories to tell & experiences that I’ve had.

Finally, just to prove that having an ostomy bag does not stop you living your life, in fact it gives you a life and has made me more comfortable in my own skin, here are a few photos from a recent photo session I did:

Credit to: Michael Hopps & Lime Photographic.

Credit to: Michael Hopps & Lime Photographic.

Credit to: Michael Hopps and Lime Photographic.

Credit to: Michael Hopps and Lime Photographic.

A big THANK YOU in advance to those that help to spread awareness and/or donate.

Until next time,

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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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