Archive | July, 2012

Race For Life 2012!

30 Jul

So yesterday, I completed the Race For Life 5k, woop! 😀

What an amazing feeling it was. To be raising money for such a major cause in society today was such an honour. It was fantastic to see how many people got together to raise money for Cancer Research. The atmosphere was really lively and encouraging and everybody seemed so up for raising as much money as they could.

I’ve wanted to do the Race For Life for a few years now. I lost my Grandad a few years back due to cancer and have known and know people in my life that have also sadly lost against, beaten or are fighting cancer.  This year, I was able to do it, which made me so happy. No matter how badly I have wanted to do it these past few years I haven’t been able.

I walked fast for the first half, then thought, “you know what? I can run the rest of the way, nothing will stop me!” & off I ran for the rest of it! It took me 40 minutes to complete the 5k which I am really proud of. The buzz I got from taking part and the amazing feeling when I crossed the finish life was just fantastic. To think back to this time last year and even a few years ago, and to be able to proud of what I achieved yesterday just means so much to me. I raised around ÂŁ500 all in all, and sponsors are still coming in from many lovely people who have supported me. Thank you if you sponsored me, it means so much to many people.

We did it Stacey! 🙂 On to the Race For Life next year I reckon! I know Grandad would be very proud. I miss him so much & think of him every day ♄

Having a stoma does not take away your life, it gives you life and makes you able to take many amazing opportunities you would only have been able to dream of before. Embrace your life with a stoma.

Remember, ‘Ostomism not Pessimismℱ’, that’s the saying I made & live by! 🙂

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A tribute to a wonderful girl.

27 Jul

Alison was such an inspiration to me. The first time I saw a picture of her I noticed her glowing smile that could light up a whole room, and just how much of a beautiful girl she was. The fact that she had a bag didn’t even occur to me until I studied the picture more, and when I saw her bag, I just thought “Wow, she is beautiful, she is proof that we can be proud of our ostomies!”. 

I then read more into her story, and wow, what an inspirational girl. She had been through so much, yet was still smiling and putting her effort into helping other people. Alison helped to give me strength and reassurance that things were going to be okay when I was really ill and just after my surgery. Jess, & Alison, from Uncover Ostomy have made so much difference to my life, it’s amazing. 

Alison was a fighter, determined to make out of life what she could with such a horrible disease. To have an ostomy bag is something to be proud of, she helped me to realise. Unfortunately, as much as she embraced having an ostomy bag, it didn’t work for her, and she had her ostomy reversed. What hell she had to go through brings tears to my eyes, it really does. We all go through such hell with Inflammatory Bowel Disease, admittedly in different extremities, but Alison had to suffer with IBD in such a horrible way, to an extent than more of us have suffered. She had countless operations, and had to undergo yet another operation recently.

Tragically, things didn’t work out for her and she ended up in hospital on a life support machine, just enough so her family & friends could say goodbye to her. I can’t believe I am writing this…It is so so sad and there is a place in my heart that feels numb, I will miss her. I look at her photos and the things she did and it inspires me so much to carry on raising Ostomy Awareness for her and to be proud. She will always have a place in my heart. I wish I’d told her just how much she has helped me and still does.

For Alison to be forced to leave in such a cruel way is just so unfair I cannot put it into words, let along at such a young age. Her memory will definitely live on & she will carry on inspiring people for many generations to come.

Rest in Peace, Alison. ♄

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The opinions of others.

22 Jul

When you first get your ostomy, or even before your op, it’s normal to worry about what others will think. Some people don’t & decide from the offset that they are going to be really open about their bag and not care what anyone has to say; positive or negative, but most people do worry about it. Before my op, I didn’t really think about what others would think of my bag, if I am honest, I was mainly focusing my thinking on how good it would feel to have a life.

After my op, I wanted to wear clothes that I liked, obviously, so other people seeing my bag wasn’t really an issue, as I’ve never been into tops that show my belly or cut-out tops, and my Mum bought me a Comfizz waistband for me to wear under my clothes.

It has never been my bag showing that has bothered me, more the scar because of the difference in scar colour compared to my pale skin. I think my scar itself is a lot more noticeable. I have a 5/6 inch scar up my stomach, to the left of my navel (as I look at it) from my operation, as they had to take my colon and tumour out via that as it wasn’t possible via keyhole surgery.

Many a time I stood and looked in the mirror before my surgery and cried at the thought of my stomach being no longer ‘bare’ and having to have something on it for the rest of my life. Even then, I couldn’t picture it or imagine what it would be like. A month or so before my operation, my stoma nurse gave me a fake stoma and some bags to get used to what it would be like to have one on my tummy and to practice changing bags/emptying them. This benefited me as it made me more prepared, but still, you never know what it’s like until you’ve had the operation and you have to deal with it, no choice on the matter.

As more time passed after surgery, I soon grew to realise that indeed, Stacey would fit around me, and that I wouldn’t have to fit around her. Of course, in the initial recovery period, there are a lot of new things to learn and life is pretty much about your new stoma and adjusting to it as you begin to get your life back, but in time, my routine I have with it for changing my bag has become as natural to me as brushing my teeth, it has become part of me. I am nearly a year post surgery, and I am still learning a lot about what food affects my output etc, but I know Stacey quite well now and am very comfortable with her.

So how do you tell others? Well, you might not want to, it’s entirely up to you, but you shouldn’t feel ashamed of having an ostomy. Of course, you can gauge who you can tell and who you can’t. I can just gauge with some people who has a narrow mind and would probably not take the news of me having a stoma in a positive light, but I can also tell with most people who would be interested in it and accept it. Don’t get me wrong, I don’t use it as a conversation starter with new people, unless of course, you’re at an ostomy roadshow or something similar, but then again, I’m not scared to bring it up. If people can’t accept it, then that’s their problem, not yours.

Take a recent example, I have been quite apprehensive about how I will tell people when I go to University and what University Life will be like with Stacey, but I stayed at a good friend’s University house a few weeks back. We went round to a little gathering at another house, all these people I have never met before, and 2 hours in, there we all were talking about health and Stacey popped into the conversation. Everybody was really interested in learning about what a stoma is and how I got it, to my pleasant surprise. I then had a bit of a worried moment a few hours later about emptying my bag in the toilet as I had forgotten to put some of my Ostomy Deodrant in, then one of the guys I met came up to me and reassured me that a toilet is a toilet and it really did not matter. He reassured me that they were getting to know me for me, and that my bag is simply a part of me and if anything, makes them think a lot more of me for what I’ve gone through and being so brave and positive with it all. This honestly made me well up. For so long I had been worrying about the University lifestyle, that it couldn’t have gone any better to sway my opinion. Now I feel a lot better about going to University. Admittedly, there will be some people who won’t try to understand or I won’t tell, but I certainly won’t deny having one if the chance comes up in conversation or I get asked. Why should I? I have nothing to be ashamed of. There will be a wide range of people with different health problems there, and different backgrounds and lifestyles, and Stacey is simply part of my life and background.

If anyone ever tells you you can’t be proud, or feel sexy, or show off your body with a bag, prove them wrong! Yes, nobody’s perfect, but we should all feel proud of our bags and scars for everything we have overcome! I wonder if we’d see the people who criticise going through the hell some of us have had to go through and still come out the other side smiling? Something tells me their minds are too narrow.

Here is me braving it all 🙂 I hope this shows you all that really, having a bag is not the end of the world, in fact, it is something that has it’s own beauty & is something to embrace. Mine gave me my life, without it, I would not be here. Embrace your bag & you, you are one special being ♄!

 

Ostomism not Pessimismℱ ♄

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The end result of the ‘NHS Advances in Stoma Care’ video I got to be part of.

19 Jul

So here is the link to the final version of the video on Stoma Care, that I worked on with Comfizz. It was such an enjoyable day & I am so pleased with how the video has come out!

More than anything, I am honoured to be part of taking those steps further to raise Ostomy Awareness and to help represent such an amazing, friendly and supportive company; Comfizz.

You can check out their stoma support garments at: http://www.stomawear.uk.com/

For the full article, go to: http://www.edirecttv.co.uk/videos/nhs-advances-in-stoma-care/

I am so pleased I got such a wonderful opportunity! 🙂

One step further to Ostomy Awareness!

Making some progress…

18 Jul

So I’ve been doing my dilator every day for a week now, and even though it’s been too painful to push it completely in, I’ve managed to get it most of the way in, a bit further each day. I never look forward to it, but it’s something that has to be done, and I have been through a lot worse… I just keep reminding myself that when I find myself getting upset. Don’t get me wrong, I’ve felt disappointed in myself that I haven’t managed it all yet, but at least I have been doing it and not bottling out. Stacey has felt so much better really since the day after I started using my dilator. She no longer feels tight or gravelly and painful when food is coming through and I am finding that I am having a more regular pattern to my output if I eat properly in the day. I am so pleased that the pain has subsided and now I don’t feel worried that my Crohn’s is coming back or anything along those lines. I shouldn’t have thought it, but having suffered with it for the vast majority of my life, it would not be natural if it had not crossed my mind, no matter how pessimistic or optimistic I was about it.

On the anaemia front, it is still quite significant, but I have been taking my iron tablets & have been given some anti-sickness tablets if absolutely necessary, though I am not keen on taking anti-sickness as most of them make me sick, weird I know! Everything else in my blood results was fine, but I need to keep persevering with taking the iron then if things still don’t improve they are going to look at giving me iron infusions. Still feeling very tired and find it hard to get warm once I’m cold and stay warm, feeling dizzy and weak, but as I always tell myself, things could be worse. Just got to get on with what you can and try to keep smiling and enjoy yourself! 🙂

Since last time I wrote, I have been working a little bit, seen friends and had some great days with them, had an Indian Takeaway for my Gran’s Birthday and went away for the weekend just gone with my Mum! We went to Tynemouth to see The Wanted perform at Tynemouth Priory and Castle, which was just phenomenal, definitely up there in the best nights of my life. I had an absolute ball, jumping around non-stop for an hour and twenty minutes, made some new friends, sang my heart out and got all of The Wanted boys to notice me and wave at me/blow kisses at me/make peace signs at me 😀 Without Stacey, I wouldn’t have even been able to consider it, it would have been a definite no-go this time last year or the past 15 years. Then after, we stayed overnight and had lots of giggles, then the following day we headed back. On our way stopped and enjoyed a gorgeous Sunday Lunch, yum! That’s another thing that Stacey has allowed me to do… enjoy my food, and besides enjoy, actually be able to eat! It is just amazing, more than words could ever explain! It makes me well up just thinking about how lucky I feel and happy to have her and be here to experience lots of new things without worrying about being in pain or not being able to make it to the toilet in time. Even the things I did experience, I never properly enjoyed, especially towards my operation I would have panic attacks and bad anxiety as a standard thing going out. I also met  Donna Mear, and her daughter, who is a lovely lady with an ostomy, even though it was a brief meeting! It was really nice to finally meet her. I also finally found the guts  (pun intended) to go and get my nose pierced yesterday, and have a cute, little diamantĂ© jewel now as a nose piercing! 🙂

I have been thinking a lot recently back to this time last year, with it coming up to a year post-op next month. It is truely amazing how quick things can turn around in such a short space of time. It is amazing how one month, you are heading for death’s door, then the next you are practically at it, to the next having your life saved then building a life you have never had or have imagined before in the months that follow. Going through my photos on my laptop has made me really emotional, just to see how ill I looked last year and over the years, and how the pain and illness shows in my face and body, no matter how hard I tried to hide it. I remember now how I just wanted to give up and no longer carry my life on this time last year, I had had enough and was ready to give up the fight, but something inside me just kept me slowly pushing through it and as the saying goes: “When your mind says “give up”, Hope whispers “one more try” .” There will be some of you probably reading this, who feel how I did when looking at others who had an ostomy or had got better before my operation, in the sense that you think “Will that ever be me who gets better?”, “Will that ever be me who has a life?” and “What have I done to deserve all of this pain & suffering?”…All the questions you go through in your head like that when such a horrible disease is trying its best to overcome you and destroy you, no matter how hard you try and fight. The truth is, it will get better. You might be reading and be thinking “well, it’s easy for you to say that…” and I can totally understand your point of view, because I did exactly the same, but take it from me, somebody who has been there, it will, it won’t last forever. It may sound a little clichĂ©, but believe that it will get better, even if there’s only a tiny bit of you that can believe, because as long as you have hope and faith, you will get there. Have faith in those who are going to make your life better too, they are committed to making you better. Have faith that your life will turn around and you will be able to do things you have only been able to dream of, even if that is something simple like dreaming of a life where your days aren’t spent counting the tiles on the bathroom wall as you hopelessly sit there clinging on for dear life in agony while the whole world and it’s wife drops out of your backside, or refuses to ever make an escape, depending on your “lovely” devil child of a Digestive System.

To give you an idea of how ill I was inside, here is a photo from my Colonoscopy over three years ago now, before I started Infliximab:

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Pretty grim, eh? And to think I survived another two years before surgery, with that getting worse, and strictures left, right and centre, I have no idea how. That is just a small portion of my colon, I would dread to see the entirety of it! I remember my consultant at the time coming through to me after the scope and saying “your intestines are shot” and explaining to me how he has never seen Inflammatory Bowel Disease so bad more than a few times in his career, let alone on a teenager.

The best thing about it all? Yes, Infliximab failed, all my medication and treatment options failed, but I no longer have that now. The devil colon has gone and will never return! Here I am, alive to tell the tale, medication free & I can very happily tell my devil colon & Crohn’s Disease to go to hell! I fought you, and yes, I won! 

Stacey, we make a great team! 🙂

Attention J-Pouchers!

11 Jul

Top Photo: Meg (Left) & Me (Right) (: ♄

So I’m doing a blog post to ask those who have a J Pouch/have had J Pouch surgery to please let me know. I have an amazing friend, Meg Price, who writes: http://www.stanleystoma.wordpress.com, who has just had stage 1 of the J Pouch operation. She would really benefit from talking to those with experience of the J Pouch as she is feeling quite lonely and finding things very tough. If you could please let me know if you’d be willing to talk to her by commenting on this or by joining ‘My Bag & I’ on Facebook and letting us both know, that would be great. She doesn’t have much opportunity to get on the internet at the moment, so if you could please let me know and I will get in contact with her.

Any help is much appreciated. She is an amazing, inspirational lass and I really want to help her in any way that I can. Nobody should ever feel alone. She is a true fighter and I am very proud of her, those who know her will know she is such a lovely girl. Please help me support her. We love you Meg ♄

Thank you for reading ♄

The outcome of my trip to the hospital.

11 Jul

To say I wasn’t nervous this morning would be a lie, but, I’ve been through much worse, right? That’s what I keep telling myself.

I saw one of the surgeons who did my operation & one of the stoma nurses, both extremely lovely ladies who make me feel totally at ease & looked after & reassured. I really was not looking forward towards Stacey being poked around at once again, making me cringe at the pain! But hey ho, you get on with these things eh? We have no choice. If you know what’s best for you, you let them do what they have to do. The surgeon put her finger inside Stacey and had a good wriggle about which was quite painful and sore because it is very tight, and so did my stoma nurse. It was quite comical really, I had to laugh, they both have different sized fingers so they were comparing how tight Stacey seemed to the width of their fingers whilst I attempted to bite my tongue, not to swear or to inhale suddenly at the pain and pull some horrid face! They had to wait on a few occasions for Stacey to stop grumbling and pouring, ever the drama queen that she is.

After this, my surgeon suggested that the best thing for me would be dilation everyday at the moment. When I first went in I saw my stoma nurse opening a package with the dilator in, which at first, didn’t even occur to me what it was & I just thought it must be for someone else…Not actually for me, what an amazing gift, I must say, just what you want for Christmas, yeah right. You could have knocked me down with a feather at the suggestion of this…good job I was laying down on the bed! The thought of dilating myself really makes me cringe & feel very uneasy, I thought I’d put all that behind me with the removal of my colon and my devil child rectum; no more colonoscopies, tubes, fingers, gas to dilate the colon, all of that never again, thank heavens. 

This is the dilator I have to use every day for my stoma.

I never even thought of things going into my stoma, I mean, things are meant to come out of there, but then again, same with your bum. They both showed me how to dilate myself, to which, at first I couldn’t even look and covered my eyes, scrunching them up in an attempt to escape what was happening and forget the pain. The bit that got me the most was the popping sound it made when the dilator was pushed past a certain point of my intestine muscle, that also hurt the most, but that popping sound is perfectly normal and is what I need to look out for when doing it myself. Then I thought, “come on, face it, this is reality, you’ve gone through much worse.” The surgeon reassured me it would be fine and that I had to look so they could show me what to do properly, so I looked, and yes, it was weird, but not the world’s biggest deal, I will get used to it, it’s just something incredibly new to me.

So, I have to dilate every day when I change my bag and leave it in for approximately 30 seconds. I’ve been given a lubricating jelly to use to make it a lot more comfortable and manageable. I have been told that it is bound to be very sore and hurt for a good while at first and to expect some blood, but hopefully, as time goes on, the pain will get less and my stoma will become less tight and more relaxed. No surgery on the cards yet, if it is at all needed, thank goodness. I have to go back in 2-3 months to reassess the situation, but according to my surgeon, I should be able to get it all under control with this dilator every day without the need of surgery to re-fashion Stacey.

Other than that, good news, she is really pleased with me and how far I have come since this time last year. It is people like my surgeon and stoma nurses that really make me have faith in what I can achieve with Stacey and know that I am far from alone.

I feel so lucky. No sign of Crohn’s or inflammation or anything untoward.

I will get used to this, yes, tomorrow when it comes to it and for a while I will be a bit of a wimp and it’ll take be a while to pluck up the guts to do it (pun intended) but just like getting used to having Stacey, it will become part of my daily routine before I know it. I just keep telling myself:

“No stress Amy, you can do this, you have been to hell and back already, this should be a walk in the park.” 

Without struggle, there is no progress.