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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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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#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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My IBD quiz answers.

Hello again 🙂

So I thought I’d do this quiz and fill out my own answers that I got from http://merandaroben.wordpress.com 

Here are the questions & my answers:

IBD Q & A

  • Do you have Crohn’s Disease or Ulcerative Colitis?

I have Crohn’s Disease in remission and had Crohn’s Colitis (Crohn’s of the Colon) before my surgery to get rid of that piece of hell colon in 2011! Good riddance!

  • What was the most embarrassing IBD related thing that has happened to you thus far?

Hmm…I’m not too sure, there are a few things. One was probably when I had a scan and they had to insert a tube up my rectum to pass air into it to dilate it and because I was so narrow it really hurt and burst a bit of the lining and made me bleed. When I was on the way home after, my Mum & I stopped at a supermarket to get me something to eat and drink and I suddenly got the urge to go to the toilet and didn’t make it in time. All the blood and mucus just came flooding out and I had to get my mum’s hoody and wrap it around my waist covering my bum and legs until I got to the toilet to clean myself up then the car to change. It hurt so much! 

  • How did you react when you were diagnosed with IBD?

I was 7 at the time so I don’t really remember much other than being confused and scared and just wanting to be out of pain.

  • When you were diagnosed did you already have an idea of what IBD was? if so were you right?

I didn’t really have a clue because I was so young but I knew my Uncle had a ‘poorly tummy’ at the time – he had Ulcerative Colitis. 

  • Whom is the most supportive person in your life?

The ones that are close to me and stick by me and aren’t just there when it suits them and when I’m not poorly – you know who you are ♥

  • Has the diagnosis changed your life?

Yes, in a lot of ways, but I guess the only choice we have is to deal with the hand we’ve been dealt in life when it comes to this sort of thing and do the best that we can to live with it and not let it defeat us. It has also meant that I have met a lot of inspirational people that I wouldn’t have met otherwise.

  • Are you embarrassed to tell people that you have IBD, how long does it take you to tell people you have IBD?

I used to be quite cautious a few years ago but now I’m not bothered because if people want to make fun of me for it or not even try to understand then that’s their problem, not mine. I don’t wave it in everyone’s faces that I’ve got IBD but if the opportunity comes up then I will mention it. It also seems to be more spoke about as well as of recent months and more people seem to have or know someone who has IBD.

  • What reactions have you had after telling people of your IBD?

Mainly people have been interested and willing to try and understand but of course, I have had a few people that have made jokes and found it disgusting that I have IBD. As hurt as I initially got by it, especially because it’s something I didn’t ask for or can control, I just told myself that people like that aren’t worth my time of day and that it would maybe come back on them one day if they developed an illness. Quite a lot of the time, people I tell can usually relate to either having IBD themselves or knowing somebody that does – whether that be a family member, friend or acquaintance. 

  • What is your main trigger food? (only one)

Hmm… Thick chips. Yuck.

  • What is the best and worst part about having IBD?

The best parts are meeting inspirational people, being able to help others with IBD and learning to appreciate things in life such as not taking the feeling for granted when you have an appetite etc and the worst parts were having literally no quality of life when I was really poorly, the pain, not being able to eat and struggling to put and keep weight on, which I still struggle with now. Also, the absolute worst part is when you lose somebody to it 😦 ♥

  • Lastly ,Where was the odd’s place you had to go to the toilet?!

I’ve had to go behind a bush before when walking in the countryside, not the most gracious of places!

Until next time,

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