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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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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Choosing what to wear with an ostomy.

Hi everyone!

Personally, I love fashion & clothes and always have done even before my surgery.

Before I had my surgery, I was always worried that it would restrict what I wear but I have not really had to change anything to accommodate having a stoma. I’ve found that the only thing I have had to change is to not wear really tight fitting things like skintight bodycon dresses as it doesn’t leave my stoma enough room to work and increases the chances of leaks greatly. I find that I can still wear close fitting things though, and wear a stoma waistband or a stoma vest underneath tighter fitting garments to help minimise my bag being recognisable through the garment.

Some clothing tips I find work for me having an ostomy are:

  • Wearing ‘stomawear’ such as a stoma waistband or a stoma vest. I wear the Comfizz waistband most days as a lot of the things I wear are quite close fit, such as skinny jeans/jeggings and tighter tops. (Just type ‘Comfizz’ into google for these). Vanilla Blush also do great stoma underwear (I love the pretty high-waisted knickers!). Also, a lot of ostomates in the UK should be able to claim a certain number of ‘stomawear’ garments free a year on prescription (please check the websites of the stomawear companies for more details).
  • Choosing tops with heavier patterns to wear give me a bit more confidence that attention won’t be drawn towards any outlines of my bag, especially if they are tighter fit tops. Floral designs and striped designs are my personal favourites! (See below).
  • If I wear a tighter, plain vest and want a bit more confidence, choosing a patterned or lighter colour shirt to wear loosely over the top to add to the outfit and keep attention away from the stomach area (as seen below).

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  • Picking leggings that aren’t too tight but are a snug fit (usually higher waisted) mean that sometimes I feel I’m confident enough to not wear a waistband underneath them too, unless the top of my leggings are on show (e.g. if wearing a crop top with high-waisted leggings). (See below).
  • Wearing high-waisted garments such as shorts or skater skirts; personally I love both of these and skater skirts are a favourite of mine. (See below).

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  • Choosing Peplum designs! I have a few pretty peplum tops which I wear with a waistband underneath. I find that the waistband stops the bag at the top becoming visible if it protrudes a little under the top. (Pictured above, second on the left).
  • Floaty tops/dresses that are more gathered just under the bust; this way you still get a bit of the top that hugs your figure but the floaty bottom gives you a bit more leeway if, for example, you have an ostomy bag with high output. (See below).
  • Also, baseball design t-shirts as they are baggy and comfortable. (See below).

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Those are just a few ideas that I find work best for me.

If I go on nights out or occasions, I can take Loperamide (Immodium) capsules to slow the rate of my output rate down also, which helps to keep my ostomy bag more minimal and flat under my outfit, with a stoma waistband, especially if I have tighter fit dresses on such as these below:

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Most importantly, having an ostomy does not stop me wearing the things I love and having my own style. For most things I have found there is always a way to wear the things that I like without having to worry about my bag being noticeable through my clothes and the centre of attention. Those close to me always reassure me if I ever overthink things that from the outside you cannot tell I have a bag and that when they think of me, they don’t think of ‘Amy with a bag’, they just think of me as Amy, my own person in my own right. My Mum has been fab when my bag has been noticeable or got tucked under my waistband wrong and been a bit lumpy and has always told me to avoid me feeling uncomfortable or embarrassed at a later time. I find that this is great as that support makes me feel more comfortable as well.

Finally, I run an ‘Osto-MY Fashion’ Facebook group with three other lovely lady ostomates as well if any ladies would like to join. Due to the nature of the photos and concerns spread on the group (underwear garments etc) the group at the moment is restricted to females only, however, we have all agreed that if there becomes a bigger demand for a unisex group for example, we will do our best to arrange this. The link is: https://www.facebook.com/groups/442535202429992/

Hope you enjoyed reading this post & if you want me to do any similar posts or you have any topics you’d like to see me cover about living with an ostomy, please do not hesitate to comment on this or e-mail me at: ostomismnotpessimism@outlook.com. Also, if you would like a one-to-one chat or have any ostomy-related questions to ask or questions about living with IBD, please either comment or e-mail.

Until next time,

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New blog, first post!

Hi everyone!

Some of you may recognise me from my other blog (staceystoma.wordpress.com) and may wonder why I’ve set up a new blog. I decided to set up a new blog now so I can have a more up-to-date area to regularly blog about my experiences 2 years post-Panproctocolectomy surgery and start to introduce some videos talking about various IBD/ostomy things. I still have my old blog up and running for those who wish to visit and read about my experiences more immediately after my surgery and in the early days up until the start of 2014.

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I will also copy My IBD Story page over for those who would like more of a full story on my diagnosis with Crohn’s Colitis and how I came to have a permanent ileostomy. For those of you who are new to either of my blogs I will briefly give you a quick history of my IBD. I was diagnosed with Crohn’s Disease at age 7 then at age 17 I moved up to the adult clinic and got rediagnosed with Crohn’s Colitis (Crohn’s of the colon). Because my small intestine had been the target for the treatment for 10 years, this meant that my colon had been practically left untreated so was in a serious state. I was put on various drugs such as steroids and Azathioprine and also had the Infliximab (Remicade) infusions after having a colonoscopy that revealed the extent of the disease within my colon and rectum. I then had a scope a year after I had started the infusions and unfortunately my IBD had got too serious and was not responding to the treatment and was not healing so it was then decided on surgery. I was originally told I would need a resection but then on meeting with my surgeon it was revealed that I would need all of my colon, rectum and anus out which would leave me with a permanent ileostomy. Because of all the pain I was in and the horrible quality of life that I had, the news did not come as much of a shock to me as I had thought, and I basically took the view that if that’s what it would take to actually give me a life and stop my suffering then I was willing to go ahead with it. The next few months I spent between home and A & E then I finally had my surgery on August 9th 2011. The surgery saved my life as they found a large abscess the size of a baby’s head on my Transverse Colon (the bit that goes across the top) when they opened me up. If I had not had this removed, then it would have been a matter of days before I did not make it, with all the other factors taken into consideration as well.

The journey has not been easy by any stretch of the imagination and the week after my surgery especially was the worst week of my life. However, I would do it all again to have the quality of life that I have now.

I am nearly 2 years and 8 months post surgery and as of recent I have had my down times with it with bag leaks etc and have times where I find it hard to accept. All in all however I embrace it the best that I can and remember that it saved my life and without my stoma (Stacey I call her!) I would not be here. I am going to University in September and as daunting as it all seems, without my operation I would not even be here to be able to work towards University and get there.

I came up with the phrase ‘Ostomism Not Pessimism™’ myself as I feel that is the attitude you have to have with having a stoma and is a play on ‘Optomism Not Pessimism’ so that’s how it started! Even on my down days, I always try and remain positive deep down and keep telling myself that it saved my life.

Thanks for reading and feel free to subscribe or leave me any constructive comments or questions you may have 🙂

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