Archive | August, 2012

Emotions & less than 3 weeks to go…

26 Aug

Until I move to Uni, yikes! Nervous doesn’t cut it, but I’m also excited for new beginnings and to finally get my life in the direction that I want and have some control over it, without Crohn’s Disease ruling my life and happiness.

I’m a bit up and down with things at the moment, not because of my ostomy, just a bit touch and go with my emotions in general. The other week, I had my anti-depressants upped by 10mg, but I’ve been forgetting to take them/not being wanting to take them. I’ve pulled myself together and started taking them again today, I guess I really have to try to help myself even if it feels pointless at times. People who say depression is a weakness are wrong, depression is a sign that you have been strong for pretty much as long as you can remember, but you just need some help. People who have depression should not feel ashamed. They are not alone. I don’t have many friends at all that I can talk to about how bad I feel sometimes, not properly, but I have two at the moment who I at least try to talk to, even if I do feel like they don’t need to hear me complain! I’m an introvert when it comes to help, very much so. I don’t like to be a burden to people, and as many of you know, it’s a lot easier to bottle your feelings up than it is to share them. I just keep battling on, in the hope that one day soon, things will get a lot better, like when I get settled at University and life really gets under way and I have lots of new opportunities and people in my life. I find it very hard to talk to people about how low I feel at times, I think mainly its just an accumulation of everything that I’ve had to cope with throughout these past 20 years, I think anyone in my position would feel the same way in all fairness. I find myself just wanting to be told things will be okay, and have a shoulder to cry on, a shoulder I feel comfortable to cry on. I find it hard to eat, my appetite is all over the place. I either want to eat loads, or I can’t even manage a biscuit. I’ve spoken to my Dietitian about it, and she is great. Sleep wise, I just can’t switch off on a night until the very early hours, that’s when it hits me the hardest. I can go for days without that much sleep at all, then I can just spend a few days sleeping all morning and then it’s afternoon before I even realise and some days I don’t even feel like getting out of bed, but I still do, I try. Friends that I thought would be there for me thick and thin, don’t even know how I’m feeling or how difficult I find things at times, because they haven’t been there to even try and support me, they are too wrapped up in their own lives. I’d never wish this on anybody else, nobody should feel alone.

Some things I cannot stand at the moment, however, are, for example, if you aren’t even going to try and understand, then don’t get mad at me for being low in mood. I’m sorry, but even some of the people that are closest to me act as if I’m being in a low mood for no reason….I’m not a bad person who is just moody for no reason. Then when I finally pluck up the courage to talk to someone, 9.9 times out of 10, people just throw it all back in my face and just say “things will get better, you’ve got no reason to be depressed” and that’s the end of that. Still doesn’t change the fact that I feel how I do, in fact, that infuriates me even more. Depression is not a competition, it doesn’t matter who has the most or least rubbish going on in their lives…Everything affects everybody in different variations as that individual person. Some thing that might not bother you, might crush somebody else. A lot of what we say has such an impact on other people, so think before you speak, or at least try to understand. People just want to know you are there for them sometimes, they don’t want to hear it if you don’t get why they are depressed. People can’t control it, if they could, do you think they would choose to feel this horrible? No. I’ve had a few counsellors, and to be honest, I just find it difficult and not of much help at all. One thing I do find that helps me is music & singing, I adore singing, it channels a lot of emotion.

On the other hand, I do have a lot to look forward to, and I’m using that as the basis to get me through at the moment, as nervous and apprehensive as I am. The extreme few people that I could count on one hand who actually do try to understand and want to help, I appreciate you so much. No matter what I feel about myself, I know I am strong. I am being strong right now, and doing my best to just take everyday as it comes despite how I feel inside a lot at the moment. It took me a lot to write this post, but I think that shows I am strong in showing people, that even the people who seem the strongest, fall down sometimes. Please bear with me 🙂

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Prepare for a rant.

19 Aug

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SO angry right now. What actually possesses people to create or think this sort of thing?! I have a blog on Tumblr (some of you might have heard of it), just a general blog on my interests etc, and I am so fed up of seeing this come up on my dashboard. There are no words quite clear enough to describe just how plain rude and disgusting this behaviour is.

Many things are going through my mind right now after seeing this countless times, and in all honesty, I just want to explode with anger. For one, these ‘people’ obviously have no insight into what it is like to have a relative or somebody they care about suffer and not be able to help, or even suffer from anything themselves. How narrow minded can people actually be? It totally baffles me the levels some people will stoop to. Utter idiots, in fact, that term isn’t anywhere near strong enough, but I’ll leave that one to your imagination.

One person wondered why I cared about this sort of thing. Truth is, of course I care! I have a stoma and know many people with stomas, or who need stomas/have had stomas. The LAST thing people need to see before surgery or at any stage in their recovery is something like this. It is unnecessary and totally uncalled for. No, stomas aren’t the prettiest things to look at, I admit that, but I have seen worse things to look at. Who cares if they aren’t pretty or whatever word you want to use, seriously? Do you seriously expect that something that comes out your body to excrete waste is going to be covered in glitter, multicoloured and aesthetically pleasing?! Oh, come on, please! What angers me is when people totally refuse to understand the concept of stomas or that they actually save lives and help people…They are that shallow that they make a judgement on how something looks, just because it’s a bit different and something you might have not seen before? Do people wear their stomas out for everyone to see their waste coming out?! No, I think you’ll find that’s what stoma bags are for, if people actually had the decency to even try and understand and see over their own love for themselves, ignorance and overly-magnificent egos, and not magnificent in the positive sense. People act as if we ask for this sort of ignorance and cruel comments.

Not highlighting any subjects specifically, but in today’s society, if other subjects that are a bit risky or different were discriminated against, nobody would even allow for that to happen and they’d be made to never forget the fact that they said what they said, and in some cases, even imprisonment. I don’t think anybody should be discriminated against, just because they are different. We live in a society that is multi-cultural, multi-faith, has a wide range of backgrounds that people come from, different sexualities, different interests…Really, people are still going to be so rude? This is one of the reasons I do this blog, for Ostomy Awareness, because there needs to be way more awareness about stomas and Inflammatory Bowel Disease. It is amazing how many people I talk to who have, or know people, with stomas and/or Inflammatory Bowel Disease, yet the awareness is miniscule compared to other matters. The same goes with a lot of other illnesses that people don’t even try to understand because of the lack of support and awareness.

Even after my rant, I will say one thing, and that is that stoma or not, illness or not, with everybody’s individual differences, we should be allowed to live a life without unnecessary, cruel discrimination. The worse thing is, is that our society is like this now, and to be honest, I dread what it will turn into for generations to come if this carries on. We shouldn’t have to feel disgusted at ourselves for having a stoma, in many cases that saved our lives. We should feel proud.

Ostomism, not Pessimism™ 🙂

Oh, and Karma will probably come back round… 🙂

Less than 5 weeks to go…

14 Aug

until University! Wahooooo! 😀

I have got so many mixed emotions about it, but I mainly have butterflies & am extremely excited for a fresh start & new beginnings!

Every new beginning will bring new experiences with Stacey, mainly good all being well! I just keep reminding myself that Stacey is the reason why I am here and that she is not a hindrance. Sure, there are times when I get annoyed and start to wish I was without her, but then I remind myself, well I wouldn’t be here without her, so I’d rather have her and not change a thing in that respect. Even if I hadn’t had my operation and by some miracle I was alive, I would be in a severely worse state that I am in now…I would have no life, whereas now I do…The sky is the limit, as they say and from one of my favourite songs “Won’t stop ’til I feel the sky at my feet, my dreams are my wings.” This time last year, I wasn’t physically able to go to University, so I’m very lucky to have been able to defer my offer for a year and start when I’m as ready as can be this September.

University has been great so far about my medical needs and my ileostomy, which makes me feel even more comfortable about going. They have been so great and literally can’t do enough for me. Sure, I am dreading the times when Stacey decides to conveniently start talking in a lecture theatre like some erupting volcano but hey, I’ve been through much worse right? There will be my moments where things like that happen and, A) I just want to cry B) I want the ground to open and swallow me up or C) Both. One thing, however, which I find keeps me sane (well, half sane) is humour. I try and see the funny side of things like that with Stacey as much as I can, as to be quite honest, if I hadn’t learnt to laugh things off like that now or other things, then life would be extremely miserable and I would have lost my character and a lot of my personality. I am entitled to have my down days as well, not going to beat myself up about it, to be honest, I have reason to have my down days, I’ve been through way more than your average 20 year old has, but you know what? I am stronger for it, despite going to hell and back.

I’ve found out who two of my flatmates are going to be, and I’ve told one of the girls all about my ileostomy, and it made me so happy and a lot more comfortable how accepting she was of it and how interested she was. She assured me that she’s going to be there to help me through the hard times especially and that if I get any stick for it then people aren’t worth my time and she will stand up for me. It is really nice and lovely to know that someone would do that for me and that people will see me for who I am, bag or not. Like she said to me, the bag is just a part of me, it doesn’t define me. She’s right.

Roll on moving day!

Aside

A year ago today.

9 Aug

A year ago today, at this time, I was waking up the most petrified I have ever been. I was so close to death, yet I didn’t even know just how close and how much of a struggle and a fight the next few days were going to be to fight to live. To be quite honest, I didn’t want to live, I had grown so tired of fighting and did not want that any more, I just wanted to be peaceful and free of pain. The thing I was looking forward to the most from my operation was to not have to be in crippling agony and on the verge of literally crapping my pants, as the phrase goes, every single second. In all honesty, I was actually curious as to what it was like to live, not just breathe and tick over.

The past year has been such a roller-coaster and extremely hard. It has taken a lot of adjusting and willpower to get through it all and come out smiling. I still get my days where, to be quite honest, I wish none of it had ever happened, but then I think without it all, I wouldn’t even be alive, typing this right now and feeling the cool morning breeze float in through my window as the sun comes out and  hearing the birds sing. I wouldn’t even be able to get up after this, as I will be doing, then head to York for the day, it wouldn’t even be a possibility. I wouldn’t be looking forward to University, or looking forward to the future. Yes, life is hard, nobody said it was going to be easy, and boy, does it sure test us. As much as I may complain and be upset at times, I would not have my life any other way. I love Stacey more than life itself as she gave me life, she is my lifesaver.

Without a doubt, first off, I would not be here without my Dad. I will be forever thankful for his decision to force me to go to A & E 3 days before my operation, as much as I disliked him for it at the time 😛 Dad, thank you, more than you will ever know, for saving my life. That may sound dramatic, but it was you who took me there, and thanks to you, I was able to get the things I needed to make me just strong enough for the long operation ahead. Thank you for your endless support and watching ‘Dinner Date’ all those times in hospital with me and making me laugh! Mum, thank you so much for all your love, care and support. Thank you for the silly times in hospital that kept me sane (well, half sane!) and for all the times you have wiped my tears away and put up with me when I didn’t want to live any more. Tom, my amazing brother, thank you for being the least selfish and most caring teenager I have ever met, and for the endless hugs that made me stronger. I owe so much to my family, more than I could ever put into words, I will be forever grateful.

Here’s to the phenomenal surgeons, consultants, nurses and stoma nurses that gave me the best care I could have received. Without them, without a doubt, I would be not here.

Here’s to Meg Price, the most beautiful, courageous, kind and inspirational girl I have ever met. Your strength has made me strong and your smile and determination despite everything you have to put up with is extremely inspirational to me. You are amazing girl, never forget that.

Here is to Jade, the beautiful cadet nurse who has an ostomy. She looked after me before my operation and made things not quite as petrifying.

Here is to the two lovely stoma nurses who look after me and put up with my crazyness! Those ladies are just so amazing, more amazing than they know.

Also, here is to the beautiful Alison, who will never stop inspiring me. Sleep tight, angel.

And here is to the one & only Stacey! As much as you are full of poo and can be a pain at times, I would never ever be without you. ♥

I am now going to get ready to head off to York for the day! 🙂 Who thought this time last year that I would be able to even enjoy waking up on a morning, eh? 🙂

09.08.2011 ♥

OSTOMISM, NOT PESSIMISM™. 🙂

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A scar.

7 Aug

A scar is just a mark, not a burden, but a start of something new.

Crystal Clear,  Young Guns.

This band means a lot to me. They write a lot of songs that I can relate to ♥ When I’m feeling low, hearing a song that sounds as if it’s been written for me brings me the greatest comfort. I think to myself “yes, someone really does get me…someone else has been where I’ve been.”

The Ostomy Rollercoaster.

6 Aug

The first time I experienced a blockage was around 2 weeks post surgery. I was so elated with the fact that I actually had an appetite and a choice of what to eat for the first time in my life that basically I went overboard one night and took things too far. I mixed foods and fizzy drinks and just absolutely went to town on the whole thing, so to speak, much to my regret early hours of the morning. My output slowed down dramatically, then all of a sudden I was getting the worst cramps, Stacey was struggling to pass wind over several hours, and then I started being sick every half hour, at the same time as Stacey started going crazy. Not a very pleasant experience, at all. The pain added on top of that from the 5/6 inch abdominal wound made being sick a thousand times worse and painful, considering I have a phobia of being sick in the first place!

So this past week or so has been a bit of a rollercoaster, both emotionally and physically. A week ago I experienced a blockage, which was really painful and made me feel sick and just generally out of it and uncomfortable. I suspected it as, generally, by the time of 3am in the morning, my stoma is in serious active mode, and there was nothing and I had passed nothing for about 6 hours. This happened when I first got my stoma, but luckily that was my body just trying to adjust to everything. Last Monday, early hours, I knew something wasn’t right and had been experiencing a distended abdomen and a dull pain below and around my stoma that was gradually worsening. I tried not to panic, and immediately increased my fluid intake to lots of Ribena and water to try and encourage things to pass. This, unfortunately, had no effect. In hindsight, the first thing I should have done was take some Paracetamol or Ibruprofen to help get rid of the pain. Getting the pain under control means that you are more relaxed and that your muscles are relaxed, as when you are in pain, your muscles and your whole body tenses. Instead, I waited a while, and sat or laid on my side with my knees tucked up under my chin against my chest to try and encourage things to pass. I also had a walk about, hoping gravity would help, but still, no relief! So, I resorted to going to the bathroom and sitting with my bag off for 20 minutes with an incontinence sheet underneath my stoma in the great hope that things would get moving. I massaged around my stoma and gently pushed around it and luckily, this started to get things to move, slowly. The relief I felt was just fantastic, it was like a huge weight had been lifted off my shoulders. Even just a bit of output shifting reassured me that things were passing through. After those 20 minutes, I cut a new bag a bit bigger than normal (25mm instead of 23mm) to give my stoma a bit more room to breathe, so to speak, as Stacey was quite swollen and obviously not amused! I knew potatoes and chips were harder for me to digest and pass through, and I had eaten quite a fair bit of potato-based foods and steak pie that day, so it was probably an overload of both. The first time I had a blockage I had had some steak pie, so I am taking it that those were the culprits together this time. However, it’s vital to remember, that some people are totally fine with chips etc, it is different for the individual. What causes a blockage for one, might not for another, it is all trial and error. Mental note, remember to chew your food properly. The fact that I have a tiny stoma that’s even tinier where it comes out of my stomach at skin level at the mucosal junction doesn’t help these matters, mind, but you work with what you’re given.

Over the next few days, things were still painful passing through, and everything felt like such a chore that was trying to get through. In fact, even though I probably shouldn’t have, I stopped eating for pretty much 3 days and just drank lots of fluids. Stacey was pinching and pushing and pulling, quite the wriggler on my stomach to be honest, just making sure I don’t forget she is there, right? 😀 Using my dilator had been getting easier, but it was still very uncomfortable and painful and I still could not manage to push it in as far as was needed. At one point, the pain nearly made me pass out, and I just thought to myself “stop, you aren’t doing this anymore, ring your stoma nurse.” Using the dilator had become impossible and I was in constant pain and petrified to eat.

So, over the next few days, I went to see my stoma nurse, and she checked Stacey for me and put her finger down her to check my blockage had cleared and that she wasn’t over-tight. Luckily, the blockage had fully cleared and she said that, even though Stacey was tight, it wasn’t at a dangerous level and that she could fit her finger down. She suggested that instead of using my plastic dilator, that I scrap that, and with using a medical glove to cover my hand and some lubricating jelly, that I use my index finger. She showed me how to dilate myself with my finger even though, to be quite honest, I was really not in the mood to be poked and shoved anymore and was very sore. To my pleasant surprise, this was a lot easier and no where near as uncomfortable as using the dilator. I think the main element of the fact that I have more control over my finger and can feel exactly what is happening helps me a lot, I do find that things do affect me a lot psychologically and I have to be psychologically prepared before I do anything, or I just start to fall to pieces. Over the next few days, things got easier and less painful, and I took Codeine Phosphate for the pain. Some people have to be careful with Codeine as it slows down the bowel and Peristalsis, so it is vital that you check with your stoma nurse or doctor before commencing taking any painkiller you have not taken before or in a long while. I was also advised to stick to a low residue diet for now, so no things such as raw fruit and veg, Chinese food, wholegrain and things with a lot of fibre and caffeine, for example. I have to ring my stoma nurse tomorrow, and it was suggested to me that if things weren’t much better or shown much improvement, I would have to see the consultant again and very possibly get booked in for another operation to refashion my stoma. Luckily, fingers crossed, things have improved quite considerably, but I still aren’t eating a great deal and still get a bit of pain. We will see what tomorrow brings!

On the emotional side of things, I have been finding things quite tough to be honest. The other day, I just wanted to literally rip the bag off my stomach, get rid of the whole thing and just wished it had never even happened. I thought “Why me? What did I ever do to deserve this? I want to be normal.” Then again, what is normal? I can do being strong for so long, but there does come a time where I just get well and truly fed up and wish I could just go to the bathroom like most people. There comes a time where I just wish I could rewind and never ever have Crohn’s and grow up like a child should do. I missed out on so much, and that hurts me and always will be something that gets me. All I remember of my life is Crohn’s, I don’t have many good things to remember as things go, not without things being masked by pain, trips to the hospital, spending my life in the bathroom or getting stomach ache at the sight or smell of food. I wanted to be like the other people at school and go on foreign visits, partake in the musicals at school, be able to run around and play Basketball like I loved without having to sit down or rush to the toilets and be embarassed. I want to be able to have a flat, toned, tanned belly that if I fancied it, I could just show off without even having to worry a tinge about getting funny looks or comments off others, as much as I’d try to rise above it and do it anyway! It takes a lot of guts, pun intended. I don’t want to have to worry for the rest of my life about having an intimate relationship with somebody and my bag being there, or whether when I meet someone or fall in love worrying about what they might think or whether they’ll accept it. Even if it didn’t bother them, I’d still think about my bag getting in the way and whether I have to empty it or fold it up before even being able to have intimacy as adults do. It’s just the things like that, that really get to me sometimes. Most of the time, I rise above it and just remember that I am alive and it is Stacey that saved my life, but it still makes things difficult. I just keep reminding myself that at the end of the day, somebody who loves you will love you and your body, bag, imperfections and all. Somebody who loves you will take the time to learn about it and understand it, even if it might confuse them or be a shock for them at first. People who appreciate you for who you are will see you as you, not you with a bag, that’s just one thing on your body. It doesn’t take away your personality or how people see you in the street. Honestly, it’s natural to get insecure and worry about having a bag, even the strongest of people have their moments and it is completely fine to have them. I try to be as confident as I can, but truth is, yes I am proud, but I am only nearly a year post surgery, and I am still growing to adjust to it and accept it. Some people may never fully accept having a bag in all honesty, but you adapt as best as you can and deal with the cards you are given in life. It’s your only choice, especially when it’s live or die.

Despite everything, I do appreciate Stacey. This time last year, I was just three days away from potentially dying. I was in agony and to be quite honest, wouldn’t have cared less if I had died. I was done with fighting. Even now, that chills me. It was so close. But, I’m here to tell the tale now. That’s the main thing, and for that, I am so grateful and forever thankful to the surgeons that saved my life.

Better a bag, than a box.

Ostomism, not Pessimism™.

Now you don’t see my bag 😀