Last Night I Wished My Ostomy Away

I’ve been trying to get it into words how I feel quite a lot for a while now but just haven’t been able to. Thank you Hattie for this post – it means a lot and contains a lot of feelings and thoughts I can relate with. Love you pretty lady x

I wished my ileostomy bag wasn’t real yesterday. I wished it wasn’t there, I wished it would go away. I knocked it whilst pulling down my top and just broke down. I’m not sure if I was overtired or embarrassed by the current situation – I’d blocked the toilet with baby wipes after cleaning up (apparently you’re not supposed to flush babywipes) – and my boyfriend was annoyed about it. He told me I shouldn’t be flushing babywipes down the toilet, whilst I frantically got worked up and tried to explain that babywipes were the only thing I could use!

It was really late, like 3am, and I hid under my duvet in bits whilst he sorted the bathroom out. I felt so bad, but he’d taken control of the situation and I felt too embarrassed to stay in a room with him! I felt really upset. I thought I’d…

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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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