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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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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Got to keep on pushing through!

Hello again readers,

Thought I’d just do a post to basically give you an update of how things are with me at the moment – things have been rather busy, but a good busy, which is great! 🙂

Job wise, my job is going really well & I’ve been studying towards my next exam which is coming up this Thursday (yikes!). I’m feeling more nervous about this one but I’ll keep my head in the books this week after work and hopefully the hard work will pay off.

Health could be better, but it could be worse! 🙂 Have been having issues with my stoma again and burning skin issues around my stoma. I saw my stoma nurse last week and she gave me some adhesive strips to put on underneath my bag over the area which was irritated by stomach acid to protect it which seems to be working well so far. With my stoma bags, I have always had to cut them a little bigger to allow my stoma to be free to function a little more than most people that have stomas as I get an aggravated and narrow stoma more easily due to the muscle tightening. This is only made worse if I have a really snug fit bag around my stoma. Going to see my surgeon on Friday morning to discuss having another little procedure to potentially cut/widen the muscle where my stoma leaves my stomach at skin level again as I have been suffering with more pain and episodes of swelling/hardness increasingly recently. Talking to my stoma nurse, it seems that this may have to be done as a more regular thing alongside me still continuing to dilate my stoma myself to keep it comfortable. Alternatively, if much improvement hasn’t been gained after a few times of this procedure, then last resort would be having to create a new stoma on the opposite side of my stomach, but I aren’t worrying about that yet as it isn’t necessary and, fingers crossed, this procedure will be able to help get things under control again. I have also noticed recently with the stoma issues that trapped wind has become more regular and troublesome, which is painful and gets quite tedious. Sometimes eating meals I also feel very sick and windy not long after on a number of occasions recently, today at lunch being the last time. It’s no fun & games but I’ve been through much worse so I will get through this too fighting.

Last Sunday, I did the #GetYourBellyOut Sponsored Humber Bridge walk with some of the amazing, inspiring ‘bellies’ from the #GetYourBellyOut support group. We had fun and a laugh despite the cold and blustery (to say the least) weather and all for a good cause, raising around £1400 for Crohn’s & Colitis UK. Well done bellies!

#GetYourBellyOut visits the Humber Bridge!

#GetYourBellyOut visits the Humber Bridge!

Life otherwise is pretty fantastic! Family life is good, have had some fab times with friends recently and have also started a new chapter in my life regarding somebody special. I tend to keep my private life from my blog but I feel that he definitely deserves a mention. All I will say on that note for now is that it is absolutely amazing to find somebody who loves me for the person that I am – bag, scars, faults & all. Also, somebody who sees me as a person, not my condition or stoma, & appreciates me all the more for it & helps me to embrace it, who helps me to grow and properly supports me in such a selfless way ♥ So, if you’re reading this & worrying about nobody ever accepting you or loving you for the person you are after your surgery, or with your condition, then please have faith, that it does happen & you will find somebody who loves you for everything that you are. Of course, you might find a few frogs before you find your prince so to speak, but anybody who cannot support you or accept you for the warrior that you are quite honestly doesn’t deserve your time or effort 🙂

Until next time,

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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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