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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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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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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Introducing my first IBD/Ostomy Video!

Hi readers!

As requested, I have now produced and uploaded my first IBD/Ostomy video. I have also created a YouTube channel for my videos so if you wish to view my channel or subscribe to it, you can do so here: http://www.youtube.com/user/ostomismnotpessimism.

With it being my first video, obviously there are areas for improvement, but I gave it a good go as my main aim is to just provide help and support/information to others.

I will aim to do at least one video a week on different IBD/Ostomy related topics as well, as covered on my last blog post.

Please feel free to view my video & subscribe, or even leave me a link to your YouTube if you share your own IBD experiences and I will check them out. Also, you can leave comments if you wish at the end of this blog post or on my channel, but please be constructive as this is something I have put a lot of effort and care into in order to hopefully spread Ostomy Awareness and make others feel less alone.

I hope you enjoy watching!

Until next time,

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