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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Swimwear with an ostomy.

Hi readers,

I’ve decided to do this post as a lot of swimwear is now being advertised on clothing sites and in the shops, and also it’s that time of year where (if you’re lucky!) you’re jetting off somewhere warm on holiday in the Summer months!

Choosing swimwear with an ostomy can be overwhelming at first, especially if you’re quite soon after surgery and all of a sudden the panic hits you of “what am I going to wear?” and “what can I wear if I don’t want others to see my bag?”. It doesn’t have to be complicated, and I’ve come up with ways round still being able to wear on-trend swimwear and/or the swimwear you personally love without having to majorly change your own style and taste just because you have an ostomy bag. Of course, there are people who have had ostomy surgery who are quite happy to have their bag on show; a big thumbs up to them I say and it’s a really courageous thing to do! However, it is completely okay to want to keep your bag to yourself and/or scars. Having ostomy surgery is a major thing after all, and it’s important that you listen to your own feelings and only do what you feel comfortable with anything, even besides choosing what to wear.

Today, I’ve been browsing the internet at different clothes sites in general and came across ASOS and their fantastic range of swimwear. Currently, they have up to 60% off, whilst stocks last. I have put together some collages of suitable swimwear I have found to give you all some ideas of picking swimwear with an ostomy. All of the picture credit is to ASOS.com.

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There are a lot of swimsuit styles out there at the moment, and ASOS certainly shows the diverse range of styles available. Here are a few that I selected which would work great with having an ostomy bag.

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The Playful Promises Swimsuit (left) is one of my favourites of the garments I have seen. It is very feminine and gives a striking, yet not over the top, burst of colour with the intricate lace panel overlay on the cups and down the middle; perfect for detracting attention away from any bag lines underneath. I chose the other three swimsuits as they all have patterns; from simple with the black and white spot swimsuit to more complex and colourful with the Mexicali swimsuit and floral design as well. Busy patterns are a great way of minimising attention being drawn to any possibly bag bulges or lines you may worry about. As you can also see with the Mexicali Swimsuit (second from the right), there are some gorgeous cut-out style pieces that can be worn if you want to show off your figure more. Cut-out designs are differentiated in where abouts the cut-out actually is; some being cut out at the sides with side ties to secure the bottom half of the swim suit and back cut-outs for example. Also, a good thing about having side cut-outs as well is that they come in varying degrees of to what extent the cut-out piece is, with front panels being thin to quite wide depending on the coverage the garment offers. This is great for having an ostomy bag but still wanting to feel confident.

BikinistextNext, I had a look at the bikini range that ASOS have on offer. There are some lovely pieces and different styles as well, ranging from your normal bikini, to low-rise bottoms, tankinis and some really feminine high-waisted pieces. Floral print is definitely on trend and one of my favourite prints to wear and there is an endless range of really pretty floral swimwear pieces throughout the internet itself. River Island and Topshop at the moment have a few of my personal favourites that I have seen when I’ve been shopping. Here are a select few I found on ASOS.

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As you can see above, ASOS also do an ASOS Curve range, which is fantastic for ladies who are bigger sizes and have fuller figures. I think it’s great to see women with curves and those who do need bigger sizes embracing their bodies and wearing such lovely pieces. It’s really refreshing to see and reassuring for people who need bigger sizes in general that they too have the right to feel confident and embrace what they have. This is the same for people who have ostomy bags; yes, you sure do have the right to feel body confident and proud whatever shape or size you may be!

High-waisted garments in general I adore so these high-waisted bikinis above were sure to catch my eye. High-waisted bikinis make me feel confident and give me that confident edge that I wouldn’t necessarily have in a standard bikini. I love the Tumbling Clowns bikini pictured, and have also spotted some gorgeous ones in River Island and Marks & Spencer. They are perfect for keeping an ostomy bag and scars tucked safely away whether plain or patterned bikini.

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Beach dresses are a great extra that give you that bit more coverage. For example, if you want to wear a normal bikini or your swimwear but feel a bit chilly or simply don’t want to strip down to your swimwear, then a pretty beach dress number is a must. Here are a few I found on ASOS.

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The Fishnet Insert panels on the first dress (left) are definitely on trend and catch the eye. Despite it’s plain colour and no pattern, the fact that you can wear swimwear underneath or stomawear garments, alongside the eye-catching panels of the dress, mean that attention on your ostomy bag will be kept to a minimum. My favourite of these beach dresses is on the second left; very feminine and floaty for running around and having fun on the beach, or lying back and reading a book.

ShortsformentextI have seen a few men voice their concerns about wearing swim shorts with an ostomy, usually their main concern being that some swim shorts can be too plain or not high waisted enough. Admittedly, when I have been looking around, there is a more limited range for men, but fear not, as I have come up with some ways around this and some good fashion steals. Here are some I found on the ASOS website.

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Again, a tip I swear by is going for the patterns to take attention away from bag lines etc. Above are some on-trend designs and prints that will do this. I also picked the longer River Island shorts with the white panel of colour along the bottom as the eye-catching bit of the shorts to take attention away from the abdominal and waist area. Also, with all the shorts being elasticated, this is ideal for having the right level of security and comfort you need with your stoma bag without feeling too restricted or the opposite. Also, a vest could be added or t-shirt over the shorts if you feel more comfortable and there is high-waisted stomawear on offer if the shorts do not quite cut it!

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I can’t finish this post without mentioning some examples of amazing stomawear. Stomawear consists of things such as stoma waistbands, vests and briefs in different levels of support depending on the needs of the individual. Comfizz garments (www.comfizz.com) I have sworn by since soon after my surgery! Their waistbands, vests and briefs are all suitable to wear under swimwear garments and to get wet if you want that little bit of extra security. For example, ladies may wish to wear normal bikinis and wear a stoma waistband over their ostomy bag, whereas men may wish to wear the high waisted briefs under their swim shorts if the waist sits normal and is not high-waisted. I have a number of Comfizz products and have never been let down.

Other companies such as Vanilla Blush (www.vblush.com) have a gorgeous range of stomawear, ranging from feminine and sexy high waisted knickers to swimsuits and high-waisted bikinis, to stomawear for men.

Get shopping everyone! 🙂 & remember that just because you have an ostomy bag, this does not take away your right to feel confident and love the skin that you’re in! In fact, if anything, having an ostomy bag gives you more of that right to feel empowered and confident because of the battles you have overcome! 🙂

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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I’ve found a bag! (Fingers crossed)

Hi readers,

Hope you all had a good Easter weekend and aren’t feeling too rough this morning after last night’s bank holiday! I am feeling fresh myself so I can’t complain. Hopefully the infection I had last week is finally clearing off too.

So I tried the Coloplast Sensura Convex Light One-Piece for a few days and I got on really well with it. I cut the bags myself to about 24mm to give my stoma a bit of extra room as it tends to swell when it’s active. The adhesive on that particular type of bag itself is the best I’ve ever used in all fairness and even seems to be a little stronger than the flat Coloplast Sensura One-Piece.

imageThis is the last sample of the lot I got (pictured left). You can see from that photo that I haven’t cut that one yet, and you can also quite clearly see the convexity.

Pictured right, at the bottom is the front of the bag. As you can see it has a split cover and is clear not opaque underneath the split cover so you can see the stoma (through the ‘inspection window’).

As far as I’m aware they don’t do the bag in opaque with a split cover, which is the only  drawback I see in my opinion as I’ve always felt more comfortable not being able to see into  the bag. The bag also has belt loops for those who use stoma belts and the baseplate is really strong and comfortable against my skin. The emptying outlet is also really good and easy to empty from and clean after properly.  The only other thing I’ve found to be different when wearing the bag itself is it’s a tiny bit bulkier, which is understandable because of the convex baseplate. I was out for the day on Saturday and the bag material itself I had no problems with against my skin like the previous, so that’s a definite bonus having that comfort. image (1)

I’ve ordered some more of the Coloplast Sensura Convex Light on my next prescription.

Hopefully I will continue to use these. I am also thinking about changing delivery companies so if anyone has any recommendations about which to use, please drop me a comment!

Until next time,

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My IBD quiz answers.

Hello again 🙂

So I thought I’d do this quiz and fill out my own answers that I got from http://merandaroben.wordpress.com 

Here are the questions & my answers:

IBD Q & A

  • Do you have Crohn’s Disease or Ulcerative Colitis?

I have Crohn’s Disease in remission and had Crohn’s Colitis (Crohn’s of the Colon) before my surgery to get rid of that piece of hell colon in 2011! Good riddance!

  • What was the most embarrassing IBD related thing that has happened to you thus far?

Hmm…I’m not too sure, there are a few things. One was probably when I had a scan and they had to insert a tube up my rectum to pass air into it to dilate it and because I was so narrow it really hurt and burst a bit of the lining and made me bleed. When I was on the way home after, my Mum & I stopped at a supermarket to get me something to eat and drink and I suddenly got the urge to go to the toilet and didn’t make it in time. All the blood and mucus just came flooding out and I had to get my mum’s hoody and wrap it around my waist covering my bum and legs until I got to the toilet to clean myself up then the car to change. It hurt so much! 

  • How did you react when you were diagnosed with IBD?

I was 7 at the time so I don’t really remember much other than being confused and scared and just wanting to be out of pain.

  • When you were diagnosed did you already have an idea of what IBD was? if so were you right?

I didn’t really have a clue because I was so young but I knew my Uncle had a ‘poorly tummy’ at the time – he had Ulcerative Colitis. 

  • Whom is the most supportive person in your life?

The ones that are close to me and stick by me and aren’t just there when it suits them and when I’m not poorly – you know who you are ♥

  • Has the diagnosis changed your life?

Yes, in a lot of ways, but I guess the only choice we have is to deal with the hand we’ve been dealt in life when it comes to this sort of thing and do the best that we can to live with it and not let it defeat us. It has also meant that I have met a lot of inspirational people that I wouldn’t have met otherwise.

  • Are you embarrassed to tell people that you have IBD, how long does it take you to tell people you have IBD?

I used to be quite cautious a few years ago but now I’m not bothered because if people want to make fun of me for it or not even try to understand then that’s their problem, not mine. I don’t wave it in everyone’s faces that I’ve got IBD but if the opportunity comes up then I will mention it. It also seems to be more spoke about as well as of recent months and more people seem to have or know someone who has IBD.

  • What reactions have you had after telling people of your IBD?

Mainly people have been interested and willing to try and understand but of course, I have had a few people that have made jokes and found it disgusting that I have IBD. As hurt as I initially got by it, especially because it’s something I didn’t ask for or can control, I just told myself that people like that aren’t worth my time of day and that it would maybe come back on them one day if they developed an illness. Quite a lot of the time, people I tell can usually relate to either having IBD themselves or knowing somebody that does – whether that be a family member, friend or acquaintance. 

  • What is your main trigger food? (only one)

Hmm… Thick chips. Yuck.

  • What is the best and worst part about having IBD?

The best parts are meeting inspirational people, being able to help others with IBD and learning to appreciate things in life such as not taking the feeling for granted when you have an appetite etc and the worst parts were having literally no quality of life when I was really poorly, the pain, not being able to eat and struggling to put and keep weight on, which I still struggle with now. Also, the absolute worst part is when you lose somebody to it 😦 ♥

  • Lastly ,Where was the odd’s place you had to go to the toilet?!

I’ve had to go behind a bush before when walking in the countryside, not the most gracious of places!

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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