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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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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#WorldIBDDay! ♥

Happy World IBD Day everyone!

Just a short post today to show you all my outfit for the day:

IMG_7309Proud of my abdo-battle scar and bag and love this t-shirt! I also love my badges that I got off Zazzle (one for my Uncle and one for awareness as well):

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Also, if you can, please donate just £3 to Crohn’s and Colitis by text:

Do your bit for World IBD Day!

Do your bit for World IBD Day!

The amount gets added on to the end of your phone bill so no bank details are asked for. This also ties in with the #GetYourBellyOut awareness campaign on Facebook and Twitter which anyone can take part in – IBD or not & ostomy bag or not! 🙂

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Here’s just a little snapshot of my IBD journey. To have it from the age of 7 definitely makes for lots of stories to tell & experiences that I’ve had.

Finally, just to prove that having an ostomy bag does not stop you living your life, in fact it gives you a life and has made me more comfortable in my own skin, here are a few photos from a recent photo session I did:

Credit to: Michael Hopps & Lime Photographic.

Credit to: Michael Hopps & Lime Photographic.

Credit to: Michael Hopps and Lime Photographic.

Credit to: Michael Hopps and Lime Photographic.

A big THANK YOU in advance to those that help to spread awareness and/or donate.

Until next time,

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Bag leaks… Don’t you just ‘love’ them?

Hi everyone,

I’ve been experiencing increasing bag leaks the last few weeks, which as fellow ostomates will know, can be quite inconvenient. More than anything, I find that they knock my confidence a little and are a messy annoyance.

After my surgery, I was started on the Dansac bags which material wise have been my favourite; the bag covers are nice and soft and look the best in my opinion. The adhesive didn’t work for me though, mainly at night. This was because I tend to get quite a lot of wind at night causing the bag to balloon and subsequently with the Dansac bags come away from my skin. Since then, I have been mainly using the Coloplast Sensura One-Piece Drainable bags; I find that these are the best for adhering to the skin, especially when experiencing ballooning on a night. I have given a few others a try but haven’t found them to be suitable for me due to the decreased adherence to my skin compared to the Coloplast, such as the Salts Aloe Vera range, although I loved the bag itself.

The last few weeks I have been getting leaks which up until now I have not really had that many of, so I have been lucky in that sense. One of them was driving back from a gig and hotel stay in Manchester with my Mum when we were literally passing the sign that told us that the next services were not for 20 miles! My initial reaction to that was panic, but I quickly told myself that I’d just have to make the best I could of the situation, especially as I was driving and pray that Stacey didn’t do much else until we reached there. Still, it’s not over pleasant feeling your output seeping its way out under the bag and onto the skin, waistband and leggings! Then other leaks have been when I’ve been out and about or at home in the daytime. I had one when I was out shopping with my Mum the other day and changed my bag and sorted the mess in my Mum’s car in the car park; all in all it was about a minute bag change, which considering the mess and annoyance I can’t really complain at.

I always carry a little kit around in my handbag for such events and I have done since right after my surgery. I prefer to be prepared for the eventuality and carry something around rather than risk it. In this kit I have:

  • Dry wipes (4/5)
  • Skin barrier wipes (4/5)
  • 4/5 bags (I’ve had a few occasions where I’ve had a few leaks one after the other)
  • Wet wipes (You’re not really meant to use these on the skin near the stoma as a regular thing, but in the case of leaks it’s sometimes a case of whatever you can grab to make the job easier, so long as it isn’t considerably harmful)
  • A few disposable bags
  • A spare pair of knickers (having output seep down your knickers really isn’t pleasant to put up with all day!)

I carry my kit in a little make up bag, although a lot of ostomy companies provide kits as part of their delivery service for taking out and about.

Just like with having Crohn’s before my surgery, having accidents or bag leaks either way is never convenient or pleasant but I’ve found that if I try to stay as calm as possible and just tell myself that accidents do happen and I will be able to sort it that I’m not as panicky. Even people without bowel problems have accidents from time to time, and it’s just something we all have to deal with when the eventuality arises. Even 2 and a half years after surgery, I still find I do get a little upset by it, especially because it reminds me of Crohn’s experiences before surgery, but now I am thankful that I am actually able to have a life and go places which wasn’t possible for many years before surgery.

I have recently tried the Pelican Select Convex One-Piece drainable bags, which I have found a lot better for the daytime. I still wear the Coloplast Sensura of a night because of the strong adhesive and find my leaks usually occur in the daytime away from home. The Convex design means that instead of the baseplate being flat, it is curved and in a sense pushes the skin around the stoma properly down and the stoma more outwards to ensure that output goes down into the bag properly. I also find that I’m more confident now about wearing my tighter clothes and leggings etc, as I always have worn since surgery, and am less worried that a leak is going to occur. This is because I feel that the Convex bag gives me that little bit more room and leeway to ensure that output actually goes into the bag and not underneath the baseplate. I sometimes get a lot of output build up behind my stoma and it suddenly all rush out at once, as I get muscle spasms behind it that can stop output coming through as well so its vital for me that the output has the best chance of getting down into the bag as possible. I love the fact that the skin protector around the bag also has a foam backing for that added bit of comfort and security. The only thing I have found that bothers me a tiny bit about the bag is that there are two places at either side at the top that don’t stick down to my skin properly just around the outside of the adhesive, but this isn’t a huge problem to me as I wear a waistband over it anyway usually and it’s only a tiny bit of the outer adhesive. I find that my skin appeared sore the first day I tried the Pelican bags but it has been okay since and I put that down to the skin having a change in bag adhesive to get used to.

I also have the Coloplast Convex Light Sensura samples on order so I shall be giving those a try.

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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