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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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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Busy week!

Hi readers,

I’ve had a busy week sorting things for university and travelling there and back amongst sorting other things and being away so apologies for the lack of posts & videos.
Had a bit of a struggle recently with one thing and another so have also been trying to sort myself out.
Fingers crossed I’ll have a new video up this coming week although I’m not sure on what topic yet! If you have any IBD/ostomy topic ideas that you want me to cover let me know.

I’ll post again soon!

Until next time,

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Trying new bags: An update.

Hello again readers 🙂

As I explained in my last post, I’ve been trying out new bags recently to try stop leaks. I tried the Pelican Select Convex and initially got on with these really well besides the few sticking issues round the edges. However, I had a full day out away from home yesterday and found a few issues with them; the material and the emptying outlet. Even at the start of the day shortly after I had put the bag on, I was worrying I had leaks as the material became damp against my skin quite easily and was making my skin sore down near the outlet as it rubbed against my skin. Also, I found it wasn’t that good to empty in my opinion – it was quite fiddly and messy. The way the outlet has two sides and isn’t so much a flap that you can just drop down on top of that made it really hard to clean output from around it properly, especially in the creases at the sides and I found that each time I emptied it output had been seeping out because of this between empties. I had reached the end of my tether with it towards the end of the day and changed it. If the material was softer against my skin (admittedly my skin is quite sensitive) and the outlet was different, then it would be okay, but all in all this bag doesn’t work for me. That’s not to say it won’t work for others though! What works for one person doesn’t work for another so it’s always good to try these things out.

My Coloplast Convex Light Sensura One-Piece samples arrived today. I’ve got on really well with these so far and I’m glad as the Coloplast adhesive has always worked the best for me. I’ve also cut the hole size a bit bigger on the bag (around 24mm) to accommodate my stoma when it moves about more and becomes more swollen when it’s active. These samples have a clear film on underneath the cloth cover though so it’s quite novel being able to see my stoma peeking through when I lift the split cover up as I usually have and will be ordering the opaque version.

Been to the doctors today and got a viral infection he thinks in my throat and altogether, so keeping on top of the ibuprofen and getting rest whenever I can. However, I’m not letting feeling poorly stop my plans for the Easter weekend! Got to keep smiling 🙂

I hope you all have a good Easter Bank Holiday weekend if I don’t post before then & thanks for reading.

Please feel free to follow me if you have a WordPress blog yourself (I would love to follow back & read yours) or subscribe my e-mail which you can do in the sidebar, if you wish 🙂

Thank you in advance.

Until next time,

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