Woo! I’m back on! :)

April 7, 2012

Hi guys,

Haven’t been able to get on my diary for a while but thankfully it’s back on now & all sorted Did this video the other day to give you all a little bit of an update on me

Hope you are all well & taking care.

 

Best Wishes.

Amy & StaceyStoma x

Talking With Andy & My Time In London!

March 11, 2012

Hello everybody

For those of you who don’t already know, Andy is my boyfriend I decided to do another video tonight, talking to Andy about his experiences with Crohn’s Disease and living with an ostomy. He no longer has an ostomy, so he had a reversal and is now living a healthy life, watch the video for more details The video is split into 2 parts as it just exceeded the 15 minute mark for YouTube, whoops!

Part 1

Part 2

I have been a busy bee again lately, working, volunteering, seeing friends, travelling here, there & everywhere and I’ve just got back from an amazing weekend in London with my Mum. We saw ‘Ghost The Musical’ which was incredible.

The special effects were stunning & the musical made me cry :”) We also saw ‘Rock of Ages’ with Shayne Ward and Justin Lee Collins in, which was absolutely brilliant and a good laugh! Amazing weekend Our hotel was so nice & I just get a great vibe in London! I also had a great night out in town last night with Andy & one of my best friends, James! Had a great laugh & danced the night away & enjoyed a few cocktails!

Was 7 months on the 9th since I had my op! And here we are Stacey! It’s sure been hard but I’m pleased with my progress and how my life has been turned around! I have also managed to break the 8 stone mark properly for the first time in my life without medication! I am so chuffed. Size 10 jeans and tops now! Can’t complain! It’s all really good news

Take care everyone x

Dietitian

March 1, 2012

So I went to see my Dietitian a few days ago (well a Dietitian, my usual one was away) & since my operation nearly 7 months ago I have put on 12kg in weight, really pleased! I am the heaviest I have ever been without any help from medication and I feel healthy! GREAT NEWS! She said I am doing really well with my diet and to have 2 Polycal supplement drinks a day if I can just to get some extra calories & nutrients inside me. She also said to have a bit more iron in my diet from things such as stewed steak and oily fish, broccoli etc.

It is nearly 7 months since my operation – Wow, time sure does fly! My stoma is no longer 100% what my life revolves around although I love Stacey to bits. Until as recently as a month ago, my stoma was literally all I thought about, but now, I find that I can go about my day and I am not thinking about it or worrying about it half as much. It is very much a part of my routine now, just like brushing my teeth or taking a shower! It is not a hindrance to me, it is far from that. Stacey is part of me & always will be & I embrace her & love her for giving me a great quality of life I never experienced for the first 19 years of my life.

My Mum & I are going to the West End next week to see Ghost, I cannot wait! We have also got a good few more gigs booked for the summer months to go to, including The Wanted again (yeeessss!) at Tynemouth!

I am also down at my boyfriend’s family’s at the moment and heading back on Saturday. We went round Windsor Castle That was even more beautiful than I remembered it to be from just over a year ago.

Those things are just one of a countless number of examples of what Stacey has allowed me to do and given me. I can enjoy life because of her

I have a check-up with my surgeon at the end of March and lots of exciting things coming up this month.

Happy March everyone!

Lots of love and Best wishes,

Amy & StaceyStoma

xx

Busy, busy, busy & The Wanted!

February 21, 2012

Hi guys & girls,

Had a busy week! Been out and about, volunteering at pre-school, staying with my boyfriend & then this weekend just gone I went to Sheffield with Mum to see The Wanted. WOW! Now, those who know me will know I am a huge The Wanted fan, my bedroom is basically decorated with The Wanted posters for wallpaper, so you can imagine my weekend was just out of this world. We saw them on Saturday night (18th) and Sheffield Motorpoint Arena and I just can’t describe how amazing it was, it was the best concert ever. All thanks to Stacey, I was able to be there and it was a dream come true.

Next goal is to meet them :p hehe. I had such a good time with my Mum. She is just brilliant and always has been as my Mum, she is a best friend to me as well as my Mum. We had lots of giggles and girly chats and it was so nice just to chill out together I drove there and Mum drove back & both ways we sang our hearts out to The Wanted! :’)

I am doing really well with Stacey at the moment, it is getting closer to 7 months since surgery. I got a bit worried the other night when, by accident/half choking, I swallowed a Tooty Fruity sweet whole. I thought it might cause a blockage but some fellow ostomates I know reassured me that most sugary and sweet based products break down in the stomach from our stomach acid and just advised me to make sure I drank plenty of water. I had no problems thankfully I have put on weight also, which is great, I am nearly 8 stone now. I hope I can keep that weight on. I am going to see my Dietitian on Thursday so will see if she gives me any advice on what foods would be of the best benefit to me at the moment.

Today, I am just having a relaxing day with my boyfriend at home. The sun is out so we may go out later I hope everyone is well! x

Valentine’s Day Video

February 13, 2012

Hi everyone,

So it’s been quite a while since I did another update. I got the idea of the topic from watching a fantastic video of Maggie Baldwin’s she recently posted on her Facebook group & YouTube, but I’ve gone into it in my own way & explained my own opinion in a little more detail.

Because it is Valentine’s Day tomorrow, I have spoken about my opinions and advice on meeting somebody new and telling them about your Ostomy
Sorry for the rubbish quality!
For my Valentine’s Day, I am spending it with my boyfriend & we are going out to lunch then spending some quality time together
I hope you all enjoy it whatever you are doing, take care

 

Fashion Update

February 5, 2012

Hi everyone,

I have updated my ‘Ostomy Fashion’ page: http://www.stomawise.co.uk/the-diary-of-an-ostomate/ostomy-fashion/ & will be continuing to work on it. If anybody has any ideas or things they would like to see featured in it, please do not hesitate to drop me an e-mail at: amy@stomawise.co.uk.

Had a lovely meal out at a Chinese Restaurant last night followed by a cocktail with Mum. I had a cocktail called a ‘Jelly Baby’ which was yummy! Today, I have slept and just taken it easy really. I also played quite a bit on The Beatles Rock Band. I am loving Guitar Hero & Rock Band atm Tomorrow, I will be volunteering at Pre-School again for the morning which I am looking forward to, just hoping all the pipes haven’t frozen due to the snow we have had as they have done when it has snowed before! It is thick in snow outside but it hasn’t snowed anymore today and there doesn’t seem to be any signs of it snowing again at present.

Life seems to be really trying at the moment, but I am a strong believer in “what is meant to be will always find a way.” Take care everyone!

 

Cold Walls

February 1, 2012

So I’m starting this post really randomly when I say that cold walls are surprisingly soothing. Tonight/4:13 at present in the morning I feel so sick & unsettled & my legs feel like they want to walk a million miles, they are so restless. My stomach feels so full of air & every few minutes Stacey keeps having little attempts at alleviating the air from my stomach, loudly. I have a thumping headache and my stomach is doing somersaults round and round whilst I sit here leant up in bed against this cold wall. I can feel the cold sooth my skin & strangely provide some little calming relief. Stacey just made another loud and bubbly, whole hearted effort at relieving my bubbly tummy & now I’m just starting to feel hungry in all honesty.
Just imagine if we couldn’t feel pain, we would never know what it was like to be relieved from pain or what our bodies are saying to us about the state we are in. Pain lets us know that things are not right and, in most cases, that we need to do something about it.
I think I may have a little bit of a blockage/upset stomach. I had a sandwich from Subway earlier tonight/yesterday now with lettuce and cucumber, ham, pepperoni, cheese and barbecue sauce. I think the concoction of all the ingredients probably didn’t help! But lettuce and cucumber I tried this time for the first time since my operation and probably didn’t chew as well as I should have. Then I’ve had Blue WKD, and a fair amount of it for me, which just put the edge on it all I reckon, hence the pounding headache!

I’m going to try and get some sleep now.
Dear my complex body, please let me get some sleep when I lay down, without my stomach protesting and my legs feeling like they want to run away with me as I am quite simply shattered.
Yours sincerely, me.

Relaxing in a hot tub.

January 30, 2012

Hey everyone,

So I spent my Sunday afternoon relaxing in a hot tub which was really lovely and calming. I was a little bit apprehensive thinking about things such as going in a hot tub or swimming before because of having an ileostomy bag, & wondering, for example, if it would stay stuck on or whether my stoma would be harmed. Truth is, it felt no different to before when I did not have a bag and did not hurt Stacey as I was worried about with the water jets etc. Just to be safe I wore my Comfizz support vest underneath my tankini top and this made me feel a lot more comfortable, though my vest rode up my stomach anyway when I was in the hot tub somehow on a few occasions! I was really impressed with my ileostomy bag, it lasted over an hour in the hot tub without coming off and when I got out it had only started to peel and the adhesive had disintergrated a little from the top, but nothing that was even anywhere near to my bag coming off being a danger, it got nowhere near that point where I was worried. I use Coloplast One-Piece Sensura bags, really impressed with the adhesive strength. When I got out the hot tub, I decided I was going to change my bag, then cleverly went and cut and pierced the inside lining of the bag whilst cutting where the output is held, so could no longer change it as I would have been covered in output in a matter of seconds of changing it! It’s easier to nick the bag than you think when cutting I have found out of late, so I always blow a little air into the bag to lift it away from where I need to cut before cutting and cut carefully. So, my bag lasted another hour and a half until I got home as I had no other new Coloplast bags with me, then another 45 mins at home whilst I did a few jobs then finally had my shower and took off my bag Impressed!

So now I have successfully managed to overcome the worry of going in a hot tub with other people with my ileostomy bag, my next worry to overcome is swimming. I am more ready for that now by a long way, so keep your eyes peeled

I hope everyone is well. Today I do not have much planned apart from just taking it easy as I am very tired and achey. Take care everyone

Friday.

January 27, 2012

Means the weekend

I apologise for the lack of diary entries going on recently, have had a lot going on in my life and life is a rollercoaster with lots of dips right now. Just bear with me and I will get past it. Time heals a lot of things as we all know, even if not fully. I will get through the down times, but for now, its just taking each day as it comes. I hate the feeling where you feel lost, but I keep telling myself that I can get through this as I have been through much worse.

I hope you are all well and have a good weekend. I am having a chilled out one with my brother then volunteering at pre-school again on Monday morning volunteering which should make me smile

 

Looking Back…

January 19, 2012

Today has been a really stressful day, you know those days where everything just seems to go wrong or work against you? Well today has been like that. I’m writing this originally on Microsoft Word as the internet has ‘kindly’ decided not to work for me tonight on top of everything else. It is really quite something just how we all forget sometimes how much we rely on Technology today to communicate with one another and keep us in touch with the rest of the world. The world would probably appear such a different place to us all if we had no internet in our daily lives. So when you read this, I’ll have accessed the internet, unless it just decides to never let me write to you all again of course, then that’s a different ball game and could become a bit of a problem!

A lot of things have been going round my mind recently. Something that is very prevalent now I am over 5 months on from my surgery is just how many opportunities I missed growing up with Crohn’s Disease and as a teenager, as it got worse, to the point where it seriously affected my everyday life. I would be lying if I said that it does not get me down to think I have not experienced a lot of things people my age have experienced. You could argue that I am probably not as mature as some people my age in the sense of my experiences such as socially and travelling etc, but then you could argue on the other hand that I have a lot more experience dealing with illness and how to get on with life as best as you can with what life hands you regardless of the fact you are in pain every day. I had no option but to be mature dealing with my illness, I could not run away from it or escape the reality of it all.

People say to me regularly how most people, even those 20 years or so older than me would not be able to cope with things as well as I have, but then again, I think you have to be strong when being strong is the only option you have, or you would never get through the tough times or appreciate just what the better times mean. Its nights like this when I get down with a lot of things that I really resent Crohn’s Disease as it stopped me doing things I would have got a lot from such as going away with school to France. I also remember it now, as if it was yesterday, that I had to spend my day in hospital having medications pumped into me around age 8 whilst all my school mates went on a school trip without me. I cannot quite put into words just how left out I felt and different then, just as I did on many occasions. That will always be in the back of my mind and get me sad that I could not be like every other child around me at the time. Hospital seemed to be more prominent than my school life and social life. Every little occasion and thing always seems to stick in your head of everything you were denied from suffering at times like this. Anyone who says they never sit there and imagine how different things may have been without an illness is bending the truth a little, well I believe so anyway, I could be wrong, but we wouldn’t be human if we didn’t question things. I remember never been able to be a proper sister to my brother as he grew up, as for example, times he asked me to go outside on a warm summer’s day I would sit there in several layers of clothing and still be freezing and in pain and not be able to chase him around the garden as I wanted to, or join him on the trampoline as I never had the energy and if I ever got on the trampoline I had to rush inside in excruciating pain to the toilet if I ever was lucky enough to have a few bounces. Of course he was too young to understand and it pained me so much emotionally to not be able to be the sister I always dreamed of no matter how much I wanted to. There were times he would get upset with me as he didn’t understand, but somehow he could always tell when I was upset and needed a hug and would come and cheer me up.

Now I have Stacey, I realise just how ill I was and how badly my everyday life was affected, increasingly so with each Birthday. I love the fact that she has enabled me to do things in my life that I could never do before that I could only dream of doing such as enjoying a simple meal, choosing food and looking forward to eating food with a good appetite. I will never be able to get that time back that I lost with my illness, but I cannot change that. The only thing I can do now is make the most of what I do have and strive to achieve what I have always imagined as I am in the best health now I have ever been in my life.

Nobody would want to go through what I have been through in their whole life, let alone the first 20 years. Nobody would want to go through other awful illnesses or problems 20 years into their life, let alone in their whole life time. I would not wish it on anybody. With all the struggling, pain and years of hell, I guess I have become a lot stronger person and just learnt to appreciate how much of a gift it is to have good health and be able to do things you want to do and strive to make your dreams come true whilst we are able. We all have times like this when we reflect, and I think it is good to sit back and reflect on life because in the long run I think that is what helps us to see more clearly and shapes us into the people we become as we move through our lives. It is okay to feel sad and some people do suffer from depression, it is quite understandable, but to me, feeling sad or depressed is not a sign that you are weak, it is purely a sign that you are tired of having to be strong or that it means that being strong for so long comes without consequences, because being strong for so long always does take its toll on a small or large scale at some point. I have been on anti-depressants since the age of 17 years old, and when I tell people this most people do not believe it as I appear a very happy, bubbly and strong young woman I get told. Anti-depressants are not something to be ashamed of or scared of, they have helped me and taken the edge off the emotional struggle when I have really needed the extra help and I am normally a very happy girl who has a lot to look forward to Even the strongest people struggle and it is totally fine to accept that and accept that sometimes you do need that extra help.

I am just so thankful I have a second chance of life almost, and I have got a lot of catching up to do on the years I had taken away from me, and it will all come in time, step by step. Just look at where I am now and what I have achieved already this soon after my surgery!         

Having my permanent ileostomy is all still very new to me and will continue to be a huge learning curve for the rest of my life, but Stacey has become a part of me now, I love her and she is part of my daily routine, not a hindrance or something I wish I was without, she saved me. Having a permanent ileostomy does not define me, it is purely just part of what makes me the person I am today and helps shape me into the person I will become during the rest of my life time. I am proud of Stacey and what I have achieved and I always will be Never lose sight of who you are or be afraid to follow your dreams. No matter how low we may get sometimes or even if we feel there is no way out, there is always someone else who can empathise and offer a helping hand. We never have to feel alone.

Running, Meals Out, Bowling, Dancing Stage…

January 18, 2012

Just another few things I have very recently accomplished 5 months on from surgery, thanks to Stacey. I cannot describe just how amazing it felt to run for the first time, even if only for 15 seconds at a time, and not have to stop or feel pain and rush to the toilet for severe agonising diarrhoea immediately. Today, I had a lovely meal out at Frankie & Benny’s with my boyfriend, my best friend & her boyfriend. I shared a small Tomato Purée and Garlic Bread Pizza with my best friend for Starters and a yummy BBQ Chicken Wrap and Fries for Main Course and polished it all off quite nicely with Diet Coke refills We then went Bowling and I put real effort into it and felt I could bowl properly for the first time since my operation and also went on the Dancing Stage with my best friend afterwards which was highly amusing! I may have slightly pulled a few muscles, and have an aching wrist as I am weak in my wrists, but hey, so what? I had fun! And what are a few pulled muscles and an aching wrist in the grand scheme of things? Nothing to complain about to be honest!

An update on the dreaded Iron tablets… To cut the story short, I never needed them anyway! I am never keen on seeing other Doctors besides my usual Doctor who first suspected I had Crohn’s Disease at age 7, but there are sometimes where he has no pre-booked appointments available or I cannot see him for one reason or other and I have to book in with another Doctor, usually a lady Doctor who I see on occasions. First, around November 2011, she suggested my Crohn’s was coming back and prescribed me some steroids, which I highly disagreed with and was 100% sure in myself that it was indeed not Crohn’s coming back that soon after surgery, if at all. So I did not take the steroids, as my poor body had become reliant upon them for 13 years and I thought ‘no way am I going back there, I’m staying steroid free since Day 1 of having no Colon!’ and as I thought I would in time, I picked up a few days later and just kept getting the occasional shooting pain behind my abdominal scar. Then I had to go see her a few weeks before Christmas again to have blood tests, and when the results came through I was told that she had noted down that I was severely anaemic and needed iron tablets fast as my Haemoglobin levels were indicating the urgent need for Iron. So as you all know, I put up with the ill feelings and discomfort that the Iron tablets gave me, until I couldn’t take anymore feeling rubbish and gave up. I had also been having stomach aches and pains behind my abdominal scar again and the scar itself was getting quite uncomfortable at times near the top from still being quite keloid (thick). This time I was extremely keen to get an appointment booked with my usual Doctor, and to my luck I managed to get a pre-booked appointment for this Monday just gone. I went to see him and he told me that there was no need for the Iron tablets at present and in fact, unlike the lady Doctor had said, my Haemoglobin levels are not a cause for concern but my diet needs sorting in order for my body to gain the right balance of Iron that it needs from nutrients in my foods as it now absorbs them differently without my colon. So I had the going on with those Iron tablets for nothing basically, which got me quite annoyed. So my Doctor is going to ring up my Dietician, which my appointments with have been getting put backwards time after time since my surgery, despite the surgery I went through and the need for Dietary Advice afterwards, and tell her in a polite way to get her finger out and see me soon as I should have been a priority case since the days after my operation forwards. My Doctor also felt my abdominal scar and said that it feels like there is a build up of acid and bile behind it, not helped by the fact I stopped taking my anti-acid tablets under the other Doctor’s advice! He gave me some more anti-acid tablets to take and some special scar cream which should help stop the stomach pains. I have also had to go back on supplement drinks (Fortisip and Polycal) to give my body the extra nutrients it needs, which in turn, should help me put weight on as I have stalled at around 7 stone 4 pounds for the past few months. What a carry on! Needless to say I will not be seeing the other Doctor again and my usual Doctor has said that he is there on the end of the phone and to tell the reception that he has said he will always fit me in even if they say that there are no appointments available in future.

So there you have an update on my health situation!

I have had some tough times recently, just the ups and downs of getting used to life with a bag and the things life throws at you in general! It’s been a rollercoaster few weeks and I have had my days where I have just felt like staying in bed from being exhausted and wanting to just cry for hours on end. But c’est la vie (that’s life! ), not going to beat myself up over it. Any person on this Earth has good days and bad days, its all part of life. I have also had some lovely times recently volunteering more at Pre-School, shopping, seeing friends & nights out. I have got quite a few things coming up in the next few months to look forward to including planning a holiday, doing some more modelling for Ostomy Wear, Stomawise events, seeing friends and living my life to the fullest that I can! I also met another lovely ostomate this Monday just gone called Naomi who has just recently had surgery to form her permanent Ileostomy (Stanley! ) at age 22. She is a lovely girl and I am so glad that I have been able to be there for her to talk to etc through the recent times with everything she has been through. We are both pretty crazy, hence why we get along so well, and I find that she is great to talk to and such an inspiration. The way she has taken it all in her stride is really amazing and she deserves to be extremely proud of herself. If you’re reading this Naomi, keep going girl, you are doing a fantastic job with each step you take in your new life as a permie ostomate

This has been a loooooong blog post! But I guess I did have some catching up to do with you all after these past few days of not writing! I am having a relaxing night in with my boyfriend tonight, eating sweet treats and just being lazy, this is the life!

The dreaded iron tablets…

January 12, 2012

I’ve had about 5 iron tablets now & I’ve definitely noticed the side effects. I’ve felt really queasy the past few days and unable to sleep, and when I have finally caught some sleep I have slept very lightly. Stacey isn’t the biggest fan of them by the sounds of things, she gets very noisy when I’ve taken them for several hours and goes from having very runny output to thick output, I don’t think she knows where she is at, bless her! My ileostomy output is also very dark brown/black at present and definitely smells stronger on the tablets, which is taken quite a bit of getting used to, especially when I feel queasy! It’s quite a picture really, me stood at the toilet trying to empty my bag, hold my nose or hold my breath and wipe my bag when I’ve finished and roll it back up then scramble for the Ostomy Air Freshener!

I take my iron tablets literally as I get into bed on a night, so I am going to try taking them with a meal when I do not have an empty stomach for them to sit on as by all accounts Ferrous Sulphate/Fumate tablets are quite a concoction for the digestive system to deal with on its own. I understand that there are certain foods you are meant to avoid taking them with such as dairy products like cheese and drinking milky coffee, for example, when you take them.

Besides feeling shattered and a bit rubbish, I am doing well and am keeping my fingers crossed that I will get on with the tablets better when I take them with food, so I am persevering. I have managed to keep going on with my daily life & have had the great honour of modelling some pouch covers for the C&S Pouch Covers website and advertisements.

I met up with a friend yesterday who had surgery to form her Permanent Ileostomy in December then unfortunately got a twisted bowel so had to have another operation to correct it and managed to get out of hospital 2 days before Christmas Day… She really has been through it and I admire her strength and courage. She is looking really healthy and glowing, it was really nice to see We went out for lunch which was really nice and had a catch-up chat

Today, I have been catching up on the sleep I didn’t get last night and my plans for the next few days consist of eating when I feel like it (appetite is a bit dodgy), watching tv, having some retail therapy when my money finally clears then heading home on Saturday to my parents’ with my boyfriend to head out on Saturday night for my friend’s birthday drinks

New Hair & 5 months! :)

January 9, 2012

So I had a lovely afternoon of pampering and getting my hair done this afternoon Got two differents shades of red in my hair now in streaks and got my hair cut into a bob! You can’t see the red in the video because of the lighting and webcam but will have to get some pictures up from daylight
Had a little weird thing going on with my bag today, which I will explain in my second video post.
The video cut off the very split few seconds but here goes:

Pretty impressive eh? 2 videos in 2 days hehe!

5 months since my surgery today! Thank you so MUCH Stacey! <3

First Video Post, Fingers Crossed!…

Hello everyone!
So I’m not feeling so down now, great news Still very tired but have started taking my iron tablets so I’m hoping I have no negative side effects & that they start to work very soon.

I thought I’d get a little ‘creative’, if you like, and have a go at creating and posting a video for you all. Basically just so you can see and hear me in person as I am behind this diary, I thought the video would be a good thing to do. I hope to now do video Diary posts more frequently, and as I mention in the video, if you have any stoma related issues you want me to create a video on, e-mail me on the address featured in the video or John

Here goes!

Very short and sweet but there you go

Until next time…Best wishes
~ Amy (amy@stomawise.co.uk)

A rollercoaster few days…

January 6, 2012

For some reason, one which I don’t know the exact cause of,  I have been feeling quite down with not just Stacey, but everything for the past few days. Everyone’s entitled to their down days though, I keep reminding myself that and just to keep believing that in time things will get better, as they always have one way or another. I’ve felt so alone…but then I’ve seen just how many people are there for me, especially on support groups on Facebook such as ‘My Bag & I’ and ‘Young Ostomy’. The first group is run by my friend Meg and I, and she is truly inspirational. She is always there for me to have a rant to or have a laugh with, whether it’s about my ostomy or life in general and even though I have not known her for a long while, she has already become one of my good friends. The second group is run by my friend Jade, who I first met when I got rushed into hospital. She is a Cadet Nurse and I’d spoken to her online and via texts when my Stoma Nurse got me in touch with her when I was first told about having to have my surgery. She was the first person I spoke to really openly about my thoughts on having a stoma and she took away a lot of the fear. She is another great inspiration to me.

I also had a bit of a tough day with Stacey a few days ago, I ended up having to change my bag 3 times that day because of leaks, bad wind and odour and had bad diarrhoea. I haven’t been feeling my best anyway because of Anemia. I dealt with it though, and did my new bags as I needed etc and refused to let it make me cry.

One thing I have always wanted to do is model, and another trigger of my down mood, which was stupid at the time was seeing pictures of one of my friend’s friends modelling. It got to me really deeply, seeing her modelling with her stomach showing and just being there in her whole being, no scars, no stoma bag, fashion modelling and swimwear as I have always dreamed. I had a real sinking feeling how, unfortunately because of the world of fashion, I can never do that, not showing my tummy anyway. I don’t have the nicest figure or skin or a great set of boobs like models seem to have, and everything about the pictures just screamed out to me “look at her, you could have been like that…”. So I gulped and tried to control how I felt deep inside and how much it really got to me, but truth is, when I got a moment to cry, I cried…I cried my eyes out. Having an ostomy saved my life and I would never change that, but it never takes away the emotional strain it puts on my life. I really embrace my bag as you all see and read about, but sometimes I just have to accept there will be days where I cannot do that and I struggle, and let myself cry and accept everything takes time, as much as I want everything to be perfect right now.

I posted about my feelings in one of the Facebook support groups, and the support I received was truly amazing and overwhelming. The support and kind comments I got made me start to see past all the negativity I had been feeling about it and that I can in fact model and I will be modelling, just in a way I hadn’t really imagined and accepted before. I will be modelling for Ostomy wear and challenging the possible negative stigma this year and apprehension that surrounds all elements for anyone having a stoma, facing bowel surgery or having bowel problems. Truth is, nobody’s body is perfect, we just all shape these views in our heads of what perfect to us looks like, and the media ploughs that on home more than we really see. 2012, the year I am the face of the Stomawise Ostomy Awareness Campaign as you have probably seen on the front page. That needs to be my focus and it will be. I will get past my negativity towards how seeing those pictures affected me, I will.

I will do my best to do you all proud and do my best to make Ostomy awareness a priority and more prevelant in today’s society and cultures. If we educate people more and allow people to see we should not be ashamed of looking different and being different to ‘the norm’, then we are making a huge step towards making every ostomate out there feel more proud and being able to embrace their ostomy. Those who do not have an ostomy or have never heard of one before will have the chance to realise just what it is and learn about it if they wish and even though we may not be successful in reaching everybody with our awareness campaign, we will try our best here at Stomawise, and get it out there that having a stoma does not make us ‘disgusting’ or ‘dirty’ or ‘weird’, but in fact, it makes us who we are and we will embrace who we are proudly. Nobody ever has to be alone, ostomy or no ostomy.

I hope everybody is well. I will get over this down patch. With everything I have been through, I can do this.

 

Here’s to a Happy & Healthy 2012…

January 1, 2012

I am determined to make this year the year for Ostomates & accomplish a lot of things that Stacey will allow me to do.

2010, & 2011 even more so, were the worst years of my life so far. When I started 2011 I had no idea what it would hold, and that I’d endure the toughest things I have ever been through in my life. It held a lot of pain and grief for me and many times I wondered if there was ever going to be any way out and if I would ever have my chance at life, free of pain and suffering. I kept my fingers crossed that my Infliximab infusions along with my medication would work, but I knew myself better than anyone else and knew deep down inside I didn’t feel great and told myself that I needed to start thinking about what would happen to me if it didn’t work and, as hard as it was, tell myself that if I ever had to have surgery, it would be for the best.

When I got the news that I had to have my colon out, everyone before hand was trying to keep me so positive, reassuring me that I would need a resection as my Gastroenterologist suggested at first. I remember the day 100% clearly like it was yesterday that I met with my surgeon for the first time, sat in the waiting room hiding my nervousness deep down with smiles and just telling myself that anything must be better than what I was feeling and suffering. I didn’t want to let those around me down, get them worried or appear the pessimist, but I knew in my heart of hearts that with my strictures and the severity of my disease, the chances of a resection were extremely slim. I had a feeling I’d have to have a stoma on and off for the most of 2011, months before it was set in stone. I’d tried in my head my own little ways of trying to accept it and get my head around it, and to some extent I did, as I kept telling myself it would be a new start, but truth is, nothing could prepare me for how I felt the moment the surgeon told me I would need a stoma, let alone a permanent one. A huge wave of fear of the unknown washed over me, my heart beating ten to the dozen and trying to hold back the tears and listen to what was being explained to me.

Then I met my Stoma Nurse for the first time. It all happened so quick, from sitting waiting for my appointment to going into another room and going through lots of leaflets and questions and what having a stoma would mean for me. My Dad and boyfriend kept looking at me in disbelief and I could see the hurt in their eyes that they felt so helpless and that there was nothing they could do but me there for me and get me through, and getting me through would be a hell of a rough journey for all of us. Even though it was all setting in, from the second I was told I would need a stoma for life, I was extremely set on battling through the last few months of pain and having the operation. I was so desperate for a way out from all the pain and suffering, I wanted my colon gone, gone for good and I wanted to beat such a hell of a disease that had ruined my life and  had stolen many opportunities and days of enjoyment and things that girls should be doing away from me as a young girl growing up.

The next few months were filled with many ups and downs, questioning the surgery and suddenly being set against it, but then in my heart of hearts knowing that it was have the surgery or die. The fear of the unknown, it always got me. That’s what scared me the most, having the “what ifs?” in the back of my mind and how I would really feel once I had the stoma formed and I always wondered if I would make it through the operation from being so weak and chronically ill. I saw the Stoma Nurses and had my Pre-Operative Appointments, as they wanted to give me a good few weeks to try and get my head around things so I was as mentally prepared as possible for surgery, but the truth is, I was a young girl of 19 years old, who wanted nothing but to know what it felt to actually live, not just survive, no matter what I had to sustain.

The first date I was meant to have my operation I was too weak, and would have only been able to have the first stage done that day if I survived and had to have an emergency operation. If they had done the first stage, it wouldn’t have got rid of most of the disease so I wouldn’t have felt the benefits. Thankfully, I responded to IV Steroids and managed to last another few weeks of building myself up as well as I could before I just gave up and was rushed into A & E by my Dad. I hadn’t eaten or drank for days and every gulp I took made me ache and whimper in agony. 3 days later, I had my operation. Tuesday 9th August 2011 was the best and worst day of my life. That date saved me. If they hadn’t operated, I would have had a few days left if that. I could write forever about how I felt post-op in the first few days and weeks, but I will write in detail in another post about that. All I will say now is that I would never go back to not having a stoma and passing waste like the body is primarily designed to. I am glad I don’t have to spend hours on the toilet in agony and screaming in pain and never being able to eat. Having Stacey done was the best decision I ever made, and I stand by that forever. I am complete with her now. Here’s to 2012 and the rest of my life.

I must say, however, that without my amazing family, boyfriend & close friends, I couldn’t have done it, they were the ones who came to see me every day without fail and pick me up when I was begging to die and put up with my moods and have to endure seeing me go through hell. They are my reason for my happiness and why I am here today, why I never gave up. The amazing medical team I had I will also never forget and they are in my hearts forever. Without them, I definitely would not be writing this.

I hope everyone has a fantastic 2012 and has lots of good luck and health. We all deserve it Unfortunately we will all experience the bad times, that is life, but what is important is that we are all there for one another and realise that we are never alone as feeling alone is one of the worst feelings ever. Having a stoma has made me realise this and that there’s no need to be alone. Surround yourself with love and support and embrace it. There are many fantastic support groups on the internet and support meets that I have seen and am part of, many of them being on Facebook. If you have Facebook and/or wish to chat or ask questions please feel free to drop me an e-mail on my Stomawise account: amy@stomawise.co.uk. I am always here to help and no question is ever stupid!

2012 will be the year we all unite even more

Today, I am having such a lazy day and chilling out before the big drive home tomorrow. It is pouring down outside, and one of the best feelings ever is being all cosy and tucked up in bed whilst the rain is pattering down outside – Lovely!

 

Last Diary Entry of 2011…

December 31, 2011

Hi guys & girls,

I hope you are all having an amazing NYE, wherever you are in the world reading this or have had an amazing NYE or will have

I’m having an extremely quiet one this year. Looking forward to 2012, a fresh start and new beginnings and opportunities with Stacey.

So I wish you all a Happy New Year and hope your 2012 is filled with happiness and good health!

Let’s make 2012 the year for Ostomates!

Until next year,

Amy & Stacey.

Anaemia

December 30, 2011

I’ve suffered with Anaemia for a fair few years now, ever since I got diagnosed with Inflammatory Bowel Disease. Iron pills never agreed with me with my IBD so I always ended up getting dangerously low in Iron then requiring a blood transfusion. I have always been slightly on the anaemic side as a ‘normal’ reading from my blood analysis from as long as I can remember. Now it’s back again!

When I had my surgery in August I was very anaemic and lost quite a bit of blood so had a blood transfusion during and just after surgery. I kept having my blood levels checked and my iron levels were fine more or less after surgery and for a few months after. I’ve been feeling really tired the past month or so and thought this was just down to me getting back to normal after the operation but have been feeling increasingly weak, dizzy and really fatigued and sometimes felt like I’ve been coming down with something and unable to do much at all.

I had my blood levels checked a few weeks back and have got the results back. I think the anaemia I suffer with is Iron Deficiency Anaemia.

 From what I understand this is where I have: fewer red blood cells than I should, smaller and paler red blood cells and my red blood cells will have lower levels of Haemoglobin (what transports oxygen around my body. Typical symptoms I have been experiencing are; bad tiredness and weakness, open sores & cracks on the outside corners of my lips, dry & flaky nails, headaches and have felt a few palpitations where my heart has felt to suddenly race or skip a beat. I’m not entirely sure of the cause but I guess it could be a mix of results of the surgery I underwent, menstruation and my IBD. I’m hoping I tolerate the iron pills better now I have my ileostomy, but we shall see how it goes.

Stacey doesn’t seem too bad, have just had a few pains but nothing to worry about!

I was kind of getting used to the feeling of not having to take so many pills and being well, then along comes another problem! Oh well, at least I am here I can’t really complain, this is nothing compared to everything I have been through. Moving forwards

I am hoping I feel a lot more energised in the next few weeks!

 

The ‘Stacey Stoma’ Poem…

December 28, 2011

Feeling a little bit creative today, so I wrote a little poem about Stacey Stoma and my thoughts from straight after my life-saving surgery.

Here goes!

Me under 3 hours after surgery with my bear

When I first woke up and felt in a daze,

 My body and mind felt a bit of a maze.

I remember taking a big sigh of relief,

And like I could almost taste the anaesthetic between my teeth.

“My new life starts now”, I thought to myself,

Even though it seemed a far-fetched dream to have good health.

Then I do not remember much for 3 or 4 days,

But the post-op glitches and the colourful, floating haze.

However, I know that when I saw Stacey for the first time,

I did not fear or think of the climb.

 

5 or 6 Days After Surgery in Hospital.

Instead I knew she had saved my life,

And she didn’t remind me of trouble or strife.

Before, she was just an unimaginable gift,

A light at the end of the tunnel that just seemed to drift.

But then she was here and my disease gone,

In a way she is one of the best things I’ve ever laid my eyes upon.

 

Even with that aside, the first few weeks I just wanted to cry,

I even remember things being very tough and me begging to die.

I’m so glad I persevered and saw it through,

And it is with great thanks to those around me that I am here too.

Today, four months on it has not been easy,

But I’ve learnt to love Stacey and not feel uneasy.

I get my down days but then I ask myself “why?”

I am here because of her and I can reach for the sky.

The sky is the limit and I can achieve my dreams,

I can help other people and get them through no matter how difficult it seems.

 

 Stacey is part of me and I’ll always believe,

That because of her I can strive & achieve.

She saved my life and I’ll be so thankful forever,

To the surgeons that gave me her and never gave up on me whatsoever.

Be proud of your ostomy and embrace what you can,

There’s always someone there to understand and give you a helping hand.

‘Ostomism’, not pessimism, is the key,

I now know what it is to live and be free.

I am now more alive and stronger than ever,

Stacey and I will face everything together.

 

Love you Stacey & this is for all my ostomically beautiful ostomates

Keep smiling folks! you are all wonderful.

 

 

 

My Christmas…

Wow, I had a lovely Christmas, definitely the best Christmas yet and a different Christmas compared to the others. Main difference = me being HEALTHY!

Christmas Eve and Christmas Day were great. On Christmas Eve the family, my boyfriend & I played family games & went on the Nintendo Wii and generally just chilled out & had a laugh. Christmas Day, we had a lie in then got up about 9:15 & went downstairs into the lounge altogether to open some of our presents. Being around my family and not being in pain, with my boyfriend too, was so different yet so amazing, now I really know what it feels like to be alive. I got so many lovely gifts for Christmas, including Me to You Bear things, Disney Store things, make-up, a new dress, new pjs, new shopper bags, sweets, beauty gifts, ugg boots and some money. We had a lovely relaxing day and went to visit my Grandad up at the cemetery which was peaceful. I helped Mum prepare our Christmas Dinner, then the bast part came – tucking in, eating it and even asking for seconds! Who would have thought it just 4 months ago that I would be enjoying my Christmas Dinner and even eating one single potato, let alone a huge plateful and having seconds?! Besides having time with my family & boyfriend, that was what really made my Christmas, enjoying my dinner for the first time in my life & having no pain or ill feelings after, purely delightful!   Dinner consisted of: Chicken, carrots, sprouts (needless to say I chewed them to bits!), stuffing, roast potatoes, Yorkshire puddings & gravy. I was so focused on chewing my food properly, especially the things I hadn’t tried before after my op such as sprouts and stuffing, but this was such a small price to “pay” if you like, that it didn’t even occur to me until after I’d eaten that I had made sure I had chewed the newer things to bits. I just remember sitting there after and working out why it had taken me a bit longer to eat! Then on Christmas Day night we saw my Dad’s brother & wife & my Gran. My Gran was very pleased to see me and as was I with her, it was a nice night.

Me, in my dress I got for Christmas, on Christmas Day Eve

Boxing Day, my boyfriend & I went on a lovely walk around town. The weather, another thing that was different this Christmas, was lovely and sunny and quite mild for December, completely a contrast to the snow and freezing temperatures in 2010. Then during the afternoon, I had a nap (obviously tired out from Christmas Day :p) then my family, my boyfriend, our 2 greyhounds and I walked round to my Nana & Grandad’s House (about a 5 minute walk away) and spent the afternoon there chatting away, enjoying food and drink and swapping gifts. It was great to have a laugh with my Nana & Grandad and reminisce on good memories we all have. Family time was really great this Christmas and thanks to Stacey I was able to fully enjoy it & indulge in it!

I am now down in Windsor with my boyfriend & his family for a week or so. I will be celebrating New Year here. I drove us down yesterday, and it took us just over 6 hours to get here, with traffic and stops. Needless to say that today I am shattered, but I have had another lovely day today, with my boyfriend & his Dad, and managed to gain myself some bargains – a phone case, iPhone dock/speakers and some beauty things! I am SO proud of myself for the drive down, just 4 months after my surgery. I believed in myself and listened to my body and took the stops I needed with my boyfriend and I am tired, but I did not overpush myself.

Thank you Stacey Stoma for the best Christmas yet… I bloody love you girl

I hope everyone else has had a happy, healthy and joyful Christmas time and has a lovely New Year. I hope 2012 brings you a lot of happiness, health and success…I am convinced to make 2012 my year and really get somewhere on raising Ostomy Awareness