Monday, 29 July 2013

Alan Carr & Injections

Hi Guys,

I want to start this post off with a special mention to my Uncle Alf, after a family BBQ this weekend, I promised him he would get a mention to try and 'spice up' my blog!

As many you will have seen I had a bit of exciting interruption to my Saturday night in a few days ago! There I was, dropping off to sleep when none other than Alan Carr retweeted my blog. Now I have gotten in to an awful habit of asking celebrities to RT my blog when I'm bored. I am so keen to get it out there, to educate people and rid the stigma attached to both bowel disease and stoma bags. I never really believe that these high profile people even look at my tweet, but after Sir Alan Sugar retweeted a few weeks ago my faith was restored. Since Lord Sugar first tweeted about my blog I have had lots of lovely celebrities and high profile people in the entertainment, sport & fashion industry retweet my blog - which I am truly grateful for. I was so excited that Mr Carr tweeted it, but it was around midnight and everyone was asleep so I was left to celebrate on my own. A couple of my friends who I thought would be awake, including Jess in Oz received texts.
To all my new readers, who have turned up via Alan Carr or otherwise, big hi and thank you for reading, I really appreciate it.

Now for an update on old Margaret, who continues to be a right pain in the arse.
I rung my stoma nurse last week after realising I was allergic to the new bags. It has now been decided that I will stick to my old ones and muddle on through as we have kind of run out options regarding the convex type. I have such sensitive skin and react easily that there aren't any conex bags out there left to try. This means that the seeping is continuing as well as the itching and irritation. It isn't exactly ideal but I guess, right now, it is my only option.

I am also continuing my Humira injection treatment as well as tablets daily. A lot of people are often intrigued and ask a lot of questions about the injections I have to do. Many people are, as I was, terrified by the thought of self injection but I want to put everyones minds at rest.
Below is a photo diary of injecting - NO PHOTOS OF NEEDLES for the squeamish out there.


Humira pen injection - very quick and easy and you don't have to see any needles.


Ice on the site where I will inject - means I do not feel anything


Pen with both caps off, ready to inject 


You press the grey end to the site, click the purple/red button and hold for 10ish seconds


Here is the site after the injections, the tiny pin prick barely leaves a mark and if it does it is a small bruise which fades after a few days. The red area is thanks to the ice. 

If I am honest, sometimes it is sore but I have found ways of combating this and making it less painful and much easier. Ice is a life saver, numbing the area. The needle is tiny and moves so fast out the pen I don't even feel that go in, the liquid however is quite thick so that going in to my tummy is what can be sore. The site can sometimes itch afterwards but an antihistamine soon clears that up. The whole process is about fifteen - twenty minutes out of my week and yet it kept me symptom free for years. Humira has been my wonder drug. 


On Wednesday I am heading to Bournemouth with two of my best friends, Jo and Nash, to visit another best friend Becky. I am so excited, it will be Margaret's first proper night out, trip to the beach and night away from home. Before Margaret I could have gone away with a small overnight bag but thanks to all her stuff, I am heading away with a huge bag instead!! 
As I will be spending a day at the beach, I had to sort out some Margaret friendly swimwear. When I am at home I am more than happy to sunbathe in a normal bikini with the bag out, but in public I do not want to scare others off. Personally, it doesn't bother me so much if my bag could be seen, but I don't want it to upset others around me. So, for the first time since I was 11, I bought myself a swimsuit. 


I love it! It is feminine and such a gorgeous colour. I don't feel frumpy or old in it, you can't see Margaret at all and it is in fact a lot more slimming than most other swimsuits or bikinis. 

I won't be posting on Wednesday as I will be away, so will update you on my Friday post. I will also start posting only twice a week, Mondays and Fridays, as things calm down in my life. My Wednesday lists will now be on Fridays instead.

Thank you all for your continued support and love. 
Love you lots
xxx

Thursday, 25 July 2013

An allergic reaction and 'The Margaret' dance

Hey Guys,

So I had another bit of a palaver over the past few days. It turns out Margaret is a bit sensitive and grumpy and was not happy about having her bag changed. As you guys know I have swapped to a convex bag, which should help my skin and wound heal faster and stop it being sore.
It turns out I am allergic to these new bags! To those that know me, this is not really a surprise eh! I endured many comments whilst at school about being 'allergic to everything' - many conversations have been started with words such as,
"Are you allergic to water?"
"Oh Gabi, I bet you're allergic to air"
"Oh my god, you are allergic to everything"
"What would happen if I stuck a peanut up your nose?"

But yes guys, I have found another thing I am indeed allergic to. It started Friday night with prickling and itching under the bag's seal, I ignored it through to Saturday night at which point the itching was unbearable. I was heading out so didn't change the bag so endured it for a while longer, putting it down to the heat. I woke up Sunday morning and I had scratched at the surrounding skin so much it now had open and sore patches. The surrounding seal was also disintegrating where I had scratched at it so much. I took the bag off to find a red, raised rash where the adhesive had been stuck to my skin. I can't tell you how itchy it was, I washed the area and used adhesive remover wipes to get rid of all of the sticky stuff. I then sat with no bag on for as long as I could to try and ease the itching and allergic reaction before putting a new bag on. I applied barrier cream, which helps look after the skin underneath the seal and then stuck one of my original bags on. I have since spoken to my stoma nurse and it has been decided to just have me stick to the original bags which I know work. The heat has of course not helped at all.

Despite Margaret being a nightmare again, I had a really nice weekend.
Saturday night was my friend Wyn's birthday party. This was obviously something to be excited about as it was going to be the first time in a long time that all of my friends were together, but it was also going to be the first time Margaret stays out past 10pm! Wooo, Go Margaret! Two of my best friends came round before hand whilst I had a crisis about what to wear.



My bestest friends, Becky and Jo

We eventually got on our way and walked the fifteen minutes to Wyn's house, ciders in hand. 
Wyn's was brilliant, he had put in so much effort in to the evening with fairy lights, marquees and DJ decks everywhere. The place looked especially amazing when the sun set and it got dark. 


I have two main highlights from the evening.
1/ Was a little dance move I like to call, The Margaret. 
At some point in the night I noticed some balloons which were lit up from the inside so they glowed. I thought this was BRILLIANT and got very attached to one of these balloons, carrying it around with me. Later on in the evening someone came up to me and asked what on earth I was doing. I was inadvertently hitting Margaret with the balloon, as it was so itchy. I didn't know quite what to say so went with the story that I was just dancing... I thought that would be the end of that. Until to my horror a whole group of my wonderful friends started copying my "dance move". I couldn't bring myself to tell them that I was actually trying to stop the intestine sticking out of my tummy from itching so just went with it. The only person who knew for a while was Becky, and we were creased up laughing for so long. 
So to all you lovely lot who spent much of your Saturday night slapping your stomachs, now you know why!


Me and my balloon. The flash, as you can see, was very bright.

2/ The second highlight was when Becky and my friend Sam picked up two huge beanbags on their backs and 'sumo whrestled' with each other before landing in a heap. Can you tell we are all in our 20s?




At about 1:00am Matt came and met us all from work which was lovely, recently he has been working so much and so hard that I haven't really seen him all that much. We spent a lot of time dancing, which I have really missed. By 2:30am I was exhausted. Matt and I headed to the local McDonalds (naughty!) as I was starving before grabbing a taxi home and sleeping for a long, long while. 

I have spent the last few days going on walks, heading to the pub and baking.


Summer Fruits Drizzle Spong Cake




I have been feeling a lot happier and like my old self thanks to being able to drive and getting out a lot more. Fingers crossed everything keeps just getting better eh! 

Lots of love, 
xxx

Sunday, 21 July 2013

Best Bloggers & an Update


Hi Guys

So, as I said way back when I first started Gift of the Gab (2months ago-ish) I am a big lover of blogs. I am secretly, or not so secretly, pretty nosy and love reading about what other people are up to.
As I missed my Wednesday post, here is my Wednesday list of my top blogs. Some are Crohn's based and some are fashion and lifestyle based. Enjoy! 
In no particular order...


Incredibly brave 22 year old woman who is conquering breast cancer. Her blog is heart warming and so honest, it really makes you realise what is important in life. 

Rumi Neely posts images of her outfit choices as she travels.

A young stroke victim who blogs amazingly about her battle to recover from an awful event. Her blog is more of an ongoing story rather than your typical blog posts but is one of my favourites.

I only recently found this blog but LOVE the way it is laid out. It is so crisp and easy to navigate. 

Another brilliant fashion blog, focusing on street style from round the world.

I found Tanya Burr about a year ago and think she is brilliant. She has a blog as well as two vlog's one is make up and beauty and the other is candid videos about her life. 

This is Steph's wonderful blog. As I have said before, it was the first 'stoma' blog that I found and it will always remain a firm favourite.

Rachel (The Stoma Bag Lady) blogs and vlogs about her journey with her stoma Winnie. She had her op about 6 weeks before me and is trying to complete 101 things with her new partner in crime! 


So I have begun writting this post whilst babysitting. Something I haven't been able to do in a long, long time. At the moment I am unable to have a full or part time job so it feels great to earn some money! I also love working with children. I have always battled with the idea of becoming a teacher but decided to pursue my fashion dream first. I would love to be a primary school teacher or to work with special needs or disabled children. For the past few years I have worked, helping a family with two autistic boys and a toddler. I love working with them and it is the most rewarding thing I have ever done. 


My beautiful view whilst babysitting

Yesterday marked 6 weeks since my op! The big 6 week mark has been reached! 
When people talk about recovery and goals it always seemed to be that up until 6 weeks things can be tough but from then on you should be able to start getting your normal life back. 
The most exciting thing I can now do is once again drive. I cant tell you how excited and happy this makes me. I learnt to drive four and half years ago and right from passing my test had access to a car, this has meant I am very used to being able to head off whenever I fancy. I am very independent and have hated having to rely on others to get around and not being able to just get out the house and away when I wanted to. There are two reasons why I was unable to drive, the first being I had just had major abdominal surgery. My stomach was sore and I had a wound, this made it virtually impossible to have a seatbelt around me let alone perform an emergency stop! Once I was able to do that, technically I could have driven with no issues. The second reason however is that, like many insurance policies, I am not insured to drive my car for 6 weeks after major surgery. I would never had thought of this had I not been told!



One of my first trips has been to drive to my hospital to have my first appointment with my consultant since I welcomed Margaret. I did not bring up the fact that they share the same name, which I would like to re-iterate is a complete co-incidnce! 
She was lovely as ever, and went through my symptoms and current medication. It was decided that everything would remain the same for the next three months at which point I may be able to lower my dose of Humira injections. I am currently doing one a week but it would be great to go down to every two weeks again as I am not really a fan...
I also explained to her about my tiredness.
It is one thing I am constantly battling with, today for example I woke up after an 11 hour sleep, went to the hospital for two appointments, came home had lunch and then slept for 3 hours. I had only been awake for four hours but was desperate for more sleep. I have now been awake for four hours and I am seriously flagging. I am finding it hard not to curl up and close my eyes.
It is ridiculous and very frustrating, it makes me very worried when I have to fully get back to 'normal' life, ie: uni, work and placements. 
She decided that I needed some bloods doing to see if I am still anaemic and that we would go from there. 
So off I trotted to the bloods room, took my number and chilled out until it was called. I have always been quite nervous of needles and my veins are known for being a bit of a nightmare! Thanks to this disease I have had to get very used to being poked and jabbed and have pretty much gotten over this fear. I no longer sit there, heart pounding and wanting to cry. As the phlebotomist took my blood she said, "I think I recognise you, are you in here often". Bit awkward when they started recognising you for the amount of time you spend in hospital!

I then had an appointment with my stoma nurse! Who said that Margaret was looking the best she had ever seen! Check her out huh!
She gave me a new type of convex bag (the domed one I showed you a few posts ago) which I have now had on for about 12 hours. So far so good I think! It feels so light and thin that I can't feel it on my skin. As far as I'm concerned there is nothing there. We will see how long this lasts eh!

I have also decided that I am going to really focus on my diet and how well I am eating. I have had my fun for the past six weeks, eating everything and anything I fancied just because I could! But now is about time I began eating healthily again. My lovely friend Emma sent me through some amazing recipes and links to some great sites and I have been testing out some new lunches! The favourite so far is a delicious Mediterranean omelette, which is amazing, so easy to make and full of healthy goodness!

I also got the juicer out from the back of the cupboard and juiced a lot of fruit! The favourite combo being mixed berries and pear. I was nervous about the acidic problem coming back but it wasn't actually too bad. I felt tingling and a bit of stinging but nothing compared to what I experience a few weeks back!






The weather has been amazing where I am, and I have been enjoying getting out there and walking with the family and dogs - often followed by a drink at the local country pub. Bliss! 




I will update you all on my lovely weekend, later on in the week!
Lots of love
xxx

Monday, 15 July 2013

Gin 'n' Tonic

Hey Guys,

Today I have been very silly.
I had a lovely afternoon sat in the sun, in a local pub garden with some old friends from school. It was so nice to catch up with everyone and enjoy myself whilst having my favourite strawberry and lime cider. My friend Louie then offered to buy me a gin n tonic - a drink I have never had before. There was some deal on or something which meant it made sense to buy two. How could I say no?!
I have to say, it was quite nice, a strange and quite bitter taste but I liked it.
I was at the pub for over three hours sat in pretty much direct sunlight, and I was so so hot. I was sweating and really felt like I was over heating. When I stood up I realised I was a little bit tipsy... for the first time in a long while - that gin definitely went straight to my head! I got home and pretty much went straight out on a dog walk with my Mum which looking back wasn't the wisest idea. I started to feel really shaky, a bit nauseous and headachy. The dreaded de-hydration had hit me!
I had a bottle of water followed which didn't seem to do much good, so followed it up with a Lucozade Sport. This thankfully made me feel a lot better. It was scary to realise how close I could have been to being quite poorly.
The thing is, when you have an ileostomy you need to stay extra hydrated. You absorb a lot of your fluids in your large intestine, which in my case is having a rest and not doing its job. This means that the output of Margaret has a lot more fluid in than a normal stool. I have to say, I have been doing a very bad job at drinking the required 2 litres of fluids a day. Today was the first time, however, that I really felt the effects. A day in the sun, drinking alcohol with no water or proper food is probably not the best idea eh!

Thanks to the amazing weather we are lucky enough to be having I have spent much of my time outside. Me and Matt decided to create our own make shift paddling pool. We were going to go buy one but couldn't be bothered to go walking through the shops in 30 degree heat. We started off with a piece of tarpaulin filled/covered with water, we then moved on to bigger and better things!
Matt had an ingenius brain wave and filled an old pond with water. It was freezing but refreshing and so nice whilst lying in the sun!





Jakey sheltering from the sun

I have also been baking some more.


Lovely lemon drizzle cake (my favourite) and some cupcakes. The photo shows them all before I decorated them, but it was all delicious, even if I do say so myself!

Margaret has largely been behaving herself despite the sun - I am clearly training her well! I am finding it quite difficult to cope with having a big sticky thing stuck to my side in the heat. She itches, prickles and sweats which is horrible. Luckily I have been able to judge moments when she isn't very active and I take the bag off and lie there, letting air get Margie. I can't tell you how amazing this feels. I have also been able to have cool showers with no bag on which is equally as brilliant!
I now also take Imodium before my evening meal and before I go to bed to try and stop me having to get up in the night. This is the main thing which is driving me mad, I have to really pry myself out of bed in the middle of the night to deal with Margaret; which is not fun. Although the pain is pretty much not there and I am feeling so much better than I was before the op, I am constantly exhausted. I wake up tired and am tired all day. I am not talking about tired after a long day, I mean if I close my eyes I may not be able to open them kind of tired. Fatigue would probably be more fitting. I do my best to keep going despite the tiredness but I deliberately don't plan anything until after midday because I know I won't be able to function. Hopefully this will get better over time eh!

Thanks for listening to my ramblings again, I would love to hear from anyone who has had trouble with sleep and always being tired!!

Lots of love!
XXX




Friday, 12 July 2013

Food & Confidence

Hey Guys,

I am writing this whilst sat in the sun, in my garden, with my dogs and a cold drink, listening to Macy Gray. Matt came home from work early and I had my favourite home made pizza for lunch. Safe to say I am pretty content right now. A huge contrast from how I was feeling even just a week ago.




I have strangely found since welcoming Margaret in to the world that I feel a lot more confident. There are a number of reasons why I think this could be the case. Firstly I have lost some weight, I am so much happier with how I look and the size that I am, which has of course effected my confidence. However, I do think there is more to it than that. Having Margaret and a bag to worry about and deal with has made me realise what is actually important. Who cares if you have a bit of tummy fat or bingo wings? Of course health and fitness is very important but my old worries of how I looked in clothes and whether my thighs/arms/face/tummy were too big have largely gone. I don't care in the same way I did before. Of course it is still important to me how I look, as it is to most people, but I don't feel the same stress about the petty, small things. Who would have thought it would have taken having a bag and my intestine poking out to realise this!

I find it such a shame that I spent years worrying about how I looked in a bikini when now I would give anything to be able to wear one without Margaret.
Having this blog and the reaction I have had from people has also given me a level of confidence. Many of my friends over the past few years have grown apart, naturally we all see and talk to each other less as we all head off to different parts of the country for Uni and work. Going through what I have has meant I have been contacted again by so many people I used to be really close to. Being poorly has made me realise how important it is to see and make time for people. It has also made me see that I am liked for me not for how I look or whether I have an intact colon. As my lovely friend Milly said, "Everyone loves you for who you are not your Crohn's".
I'm not just saying this to big myself up or show how many friends I have, because I believe it is true of everyone. I don't think anybody picks their friends on their appearance or clothes they wear - in the whole scheme of things that really isn't important.
After the shock of me having this operation and once I have caught up with everyone, Margaret and Crohn's is all largely irrelevant to my friendships.
The way Matt still loves me despite the bag has also made me feel so good about myself. To him I guess it was a no brainer, but I think it is only natural to worry about how your other half might see you differently when you have your intestine poking out of your stomach. He has been nothing but accepting and amazing through out the whole process which has in turn made me feel comfortable about myself.
If he still loves me with Margaret and my friends don't care, I think I should learn to be happy in myself too.

I have also had a lot of questions about food. Now I am not ashamed to say, I really love my food. It is very important to me, and when I was faced with this operation it was one of my biggest fears. I am happy to say that I can eat pretty much everything I want to.
From the outset I was told to avoid mushrooms, wholemeal products and food with skins such as apple skins. I have tried to stick to this as much as possible but apart from those restrictions I eat whatever I want. Five days post op, the day I left hospital, I had a McDonald's and a pizza. I made sure I chewed everything really well and had no issues. My attitude it that this bad won't stop me living my life and doing what I have always done. I find that by not being fearful right from the start I have fully embraced having Margaret. She is having to adapt to my life rather than the other way round.
Of course there is a lot of trial and error, certain foods massively thicken up the output whilst others make it watery, some foods come out completely whole and others cause my bag to inflate with gas. I have learnt that acidic foods including raw fruit and veg is a no no due to pain, until my wound has healed. I don't see what there is to fear as long as you follow the rules.
Where as most people eat mashed potato or rice crispies and milk as their first meal after the op, I was given toast. The nurse told me as I left the hospital to try have a completely normal diet and I didn't need to be strict or worry, this included one of my favourite foods, olives!!
For a food lover like me this was a huge relief!
So to all those who have just had a stoma fitted or who are having one in the future, please do not worry, like I did, about food. There is no reason at all why you can't eat the foods you love and why you can't go back to normal foods really soon after the op!

I hope you all have a wonderful weekend, thank you all so much for reading!



Lots of love,
xxx

Wednesday, 10 July 2013

Happy

Hey Guys,

I have had a bit of turn around in the past week. The new diet is working a treat and the pain is a lot better. I had the best weekend in a long time, I think the sun makes a big difference to everything. I headed to my old school's fete and then went shopping with Mum on the Saturday and Sunday was spent walking the dogs, sitting in a pub garden, watching Murray with Wimbledon and then having a BBQ. Matt had most of the weekend off which was so lovely - he is working so hard at the moment. I have spent as much time as I can in the sun, I will no doubt have the oddest tan lines thanks to Margaret.


It was a lovely few days, and as I sat there in my garden waiting for the BBQ I really did feel really happy. I realised that the last time I remember feeling completely happy was my birthday, 4th October 2012, the day before my horrific flexi-sigmoidoscopy experience. Of course there have been happy times, I have laughed and had good days but I haven't felt completely happy in the moment, about the future and everything in general since then.

The new bags have unfortunately been a bit of a nightmare, I went through four of them in about two days. Within hours they had peeled off.


Obviously this is not what you want to happen given what said bag is collecting...
Different bags work for different people and there are lots of factors involved, such as you skin type and sensitivity and the size and shape of your stoma. This means that despite this one not agreeing with me I'm sure I'll find another option. I keep forgetting I am only five weeks post op and it is still early days. Next week I am going to head to the hospital to have a look at different bag options to hopefully find one which works.

Yesterday I saw my stoma nurse again, at clinic. The pain has been getting better so I haven't been as aware of Margaret. We took the bag off to have a look and she is a bit sore and raw looking. It was again quite sore when being cleaned but I guess it is all baby steps. The wound is continuing to heal, which is great but I have now got two spots on the wound site. To me they look like white heads, but they bleed and are quite sore when you touch them. At least my nurse has seem them though so there is someone keeping an eye on it all, hopefully they don't turn in to anything more serious. Strangely the painful area isn't where the 'spout' is but around the opposite side where I have damaged skin and where the stitch ripped. For now there is nothing I can do but apply my healing paste and powder and hope for the best!

I have also been a bit of a social butterfly so far this week! I have met up with lots of different lovely friends and seeing more tomorrow. I can't tell you how good it is to get out and be 'normal'.
I have also been getting my Mary on! Yes, she is back, for the first time in over two months I baked again! I made 24 cookies for Matt and Sean for when they are at work and a batch of lacto free cupackes for me!



Speaking of lactofree I would like to say a huge thank you to the company, Lactofree, for the wonderful vouchers they sent me. Their products are a complete life saver and taste amazing. My family can't taste the difference and some products are even nicer than the dairy version! I especially love their vanilla ice cream! So big thank you to them. 


I have also gotten back to painting my nails. This was something I used to do ALL the time; I would never be seen without polished nails. My favourite current colours are Peppermint and UltraViolet by Rimmel. I am also obsessed by the Barry M colour range and the nude/pink shades of Revlon. There is something about having your nails done that makes you feel lovely even if you have had no sleep, look a state and are in pain. 



My over flowing tool box of nail polishes. 


Peppermint and UltraViolet
& the return of my lovely feet...

Having my nails painted and baking clearly shows that I am getting back to my usual self! The main problem at the moment is how tired I am, I am regularly sleeping 14 hours a night which is ridiculous. I am struggling to fall asleep every night and I still have to wake up 2-3 times to sort out Margie, but once I am asleep I am spark out. I am having to set an alarm if I need to be up before 1:00pm which is ridiculous! I hope this does get better as time goes on, and in time for my next internship come September!
I don't know how many people know but I will be interning at British Vogue! This has been my dream since I was 8 years old, I even sent a letter to Vogue aged 15 asking for work experience. I still don't think I have gotten over the fact I will be working there in just a few months time. I will of course be keeping you all updated with mine and Margaret's experience & what we wear!

One of my guest pieces has been posted on the lovely Steph's blog (you met her on Monday). I talk about my Crohn's story, from diagnosis to now. If you fancy having a read of my guest piece and the rest of her wonderful blog check it out HERE.
Thank you Steph for being so so lovely and always so supportive. 


I will leave you with news that fellow Crohn's sufferer and amazing magician, Dynamo, tweeted about my blog which is brilliant! It is so exciting when high profile sufferers spread the word about the disease!
Thank you all for continuing to support me! I am so so grateful!

Lots of love 
xxx


Monday, 8 July 2013

Meet Steph


Hey Guys! 
I am very excited to tell you all that I have hit over 30,000 views! Fellow Crohn's sufferer and amazing magician Dynamo re-tweeted my blog which I am sure helped. It is great to hear of high profile and successful IBD sufferers, it just proves that there is no reason it should stop you doing anything. 
To celebrate getting the word out to so many more people about IBD and ostomies I invited one of my favourite fellow bloggers to write a guest post for me. Imagine Being Different was one of the first blogs I read the day I was told I would be meeting Margaret; it helped me to see that it really wouldn't be so bad. 
So thank you Steph!


A big thank you to Gabi for letting me ramble on her awesome blog. As Gabi has recently had surgery for an ileostomy, I think it’s only fitting that I tell you about when I had my own.
At the end of May 2010, I had to have an emergency operation because my Ulcerative Colitis was flaring so badly. 
I had been told about surgery since being diagnosed with UC, which was back in 2008, but I never for one second really thought that it would happen to me so all the information completely bounced over my head. 
I had been in hospital for two weeks because of a virus in my bowel which wasn’t allowing the Colitis to settle. I had been pumped with so many drugs and had so many blood tests that my arms were black with bruises. Surgery had been thrown around and I said that I was tired of being sick so maybe surgery was best, I had so many things I wanted to do with my life and though I tried to never let Colitis truly stop me, he was such a party pooper sometimes and he inevitably did stop me from doing the things that I wanted to do. 
The first time I saw the stoma nurse, she marked my tummy with a black marker for where the stoma would sit and showed me some leaflets. I really don’t know what I expected the stoma to look like, but I do know that when I saw one for the first time I was like “What the…” and after she had left, I burst into tears. 
How was I meant to live my life with my intestine popping out of me? It was like right there!!! In all its pink glory, gleeful that it had been given a taste of the outside world.  
I didn’t really have time to get used to the idea, and maybe that was a good thing. Knowing me, I would have researched all the stories, freaked myself out and become super stressed about it. 
As I’m writing this, 3 years on, it’s only now that I see how unbelievably sick I was. Before I had my surgery I nearly passed out in the hospital shop and there were times in my recovery that I had to get a nurse to help me get out of bed so that I could go to the toilet.
I think people with IBD are the strongest people I have ever known. We battle through so much because we don’t want to miss out on life. We try to enjoy life as much as possible despite our shortcomings and the majority of the time people don’t even realise how sick we are. To be honest, I don’t even think we realise how sick we are! We’re so used to battling through the bad days it’s only with time and perspective that we realise that perhaps our stubborn nature of pushing through and not letting IBD win, can hinder us. 
The reason why I say this is because during my recovery process after my first operation I wanted to be out and about doing things. I pushed myself daily to recover but what I didn’t give myself was time. I saw the operation as something that would make me better and I was sick and tired of being sick and tired so I expected to have the operation and be back to normal pretty quickly. 
But what I didn’t think was that I had just had a major operation and not only that, I was extremely sick before the op. My body was trying hard to fight being so poorly and them BAM it had its large intestine removed, and was in massive shock and yet there I was, two weeks later trying to have a beer, watching the football in the pub. I put epic stress on myself to return to normality that mentally I struggled and wondered why it wasn’t happening quickly enough. 
Of course, hindsight is a beautiful thing and I’m sure those of you who have had the operation are sick of being told to give it time. I can only tell you of my experience and I’m sure, that like myself, you will find your own way. 
I named my Stoma Tin Tin and used to talk to him all the time. By the way, I do not recommend talking to your stoma in public, if you are a girl, you will look like you’re pregnant and if you’re a boy, you’ll most probably look a little strange. 
I found it easier to deal with, especially if he was acting up. I remember once trying to change him and he was spurting this weird, thick green goo and I couldn’t get the bag over him so I’d shout at him to quit p*ssing about. It never worked, but it made me feel better. What did work though was either changing the bag in the morning before I had eaten. Or Jelly babies. Those bad boys would stop any output long enough for me to clean and pop a fresh bag on. 
As time goes on, dare I say it, you and your stoma may even become friends. This is most probably going to sound a little gross but sometimes I’d just watch Tin Tin. I’d lie down and stare at his movements and listen to all the weird little noises he made. I wouldn’t go as far to say that I miss him now I have a J-pouch but I do think fondly of him from time to time, and I think that’s also because I was lucky that I did have a very well behaved stoma. Sure, he did things occasionally like leak whilst I was on my first holiday abroad or explode in bed, but generally, he wasn’t too bad. 
So I guess what I’m trying to say through this ramble is, let your body heal at its own pace, try not to get too frustrated with the ‘one step forward, two steps back’ routine, love yourself, and most importantly love your stoma. Chances are that little guy saved your life. 
You can find me over at www.imaginebeingdifferent.co.uk or @Super_Steph23 for more of my ramblings :)

Lots of love
XXX


Friday, 5 July 2013

A Face for Radio

Hi Guys!

Well! As many of you will have hopefully seen, yesterday myself and this little blog graced the pages of the local paper! How exciting! A lovely reporter, Ellis, has written an article about my battle with the disease and how I want to raise awareness of it. Secretly I just do it so I can one day meet David (we are on first name terms you see)...
But joking aside I'm excited that it has raised awareness about IBD but especially having an ostomy.
If by reading this article, and hopefully then reading my blog, even one person has a better understanding of what it all means and how it doesn't have to be the end of your life, then that is my job done well.
So... first stop local paper, next stop This Morning?!



One thing that does scare me is that thousands of people in my local area will no know that I have Margaret! I do like to think there is more to me than Margaret and Crohn's but I accept that that is what many people will know me by.
Hopefully I won't be heckled in the street eh. "Show us ya bag love" - that would be a bit awkward...

Aside from this blog I have been doing a bit of extra writting. Mainly guest blog posts for other amazing bloggers and people with IBD but also pieces for fashion and internship based sites, which is really brilliant. One that I was especially happy to write was for a brilliant website www.inspiringinterns.com.
They are an incredibly helpful site dedicated to helping people find internships, work placements and graduate jobs, many of which lead on to a full time roll or graduate job. I sent them my blog to have a little read and in return they asked to me write a guest post for their site!




The rest should all be going live over the next few weeks so the moment they do I will post a link on here for you all to check out. Sometimes I have written about my whole Crohn's story or other experiences, but the content is very often different from my blog - in other words you should all definitely read it!

Finally I have some very exciting news. Off the back of my article in the local paper I received a call from BBC Radio Berkshire yesterday. I was chatting to friends at the time so didn't pick up the call but listened to the voicemail a while later. They had seen the piece about me and had checked out my blog and were interested in conducting an interview with me about the disease, my blog and I guess, Margaret.
This little intestine is going to be famous!
We sorted out all the details and it was decided that I would feature on the Breakfast Show today. This did not give me much time to prepare myself I tell you!
I didn't think I would be that nervous, all it is is talking and I love to do that! But I only got four hours sleep last night I was so busy going over possible questions they might ask me.
This morning I was picked up by a lovely taxi man at 8:35 who took me to the small studio in the local council building. I couldn't get myself up to the main studios so was doing a live interview from this smaller studio instead. I walked in, met a very nice press officer who showed me how everything worked in this small cupboard of a room. I then sat there with headphones on and a microphone on the table, waiting for it all to start.







From 9:00 I could hear the radio show through my head phones and it was clearly a jam packed show. The producer was talking through the headphones every now and again updating me on when I would be on. Strangely the longer the wait the less nervous I got! The light in the room was on a timer so every now and again it kept turning off and plunging me in to darkness. It took me a couple of seconds to work out it was on a motion sensor; from there on every time it did it I waved around like a maniac. Eventually, it was my turn! It went so fast and the presenter was nice. I had to answer questions about the disease and how it effects my life, as well as the bag and also how other people react to my disease. We also spoke a bit about the blog and raising awareness. Once it was all over I turned the machine off and just walked out. It was the most surreal few hours. It was only as I was chatting to the taxi guy on the way home (he had kindly waited for me for over an hour) that it dawned on me that I was unsure whether the name of my blog was even mentioned! Whoops! How we managed that I don't know. I will post a link to the interview when I find it!



Once that stress was over I spent the rest of the day sitting in the gorgeous sunshine with my lovely dogs reading Clare Balding's autobiography. I especially love the bits about dogs... of course!
I tweeted about how heart breaking it is and she replied! Which totally made my day!
My lovely stoma nurse also gave me a call to make sure I was okay - she has ordered lots of TLC - I am being looked after by the nicest people! My weekend is going to include lots of relaxing, sunshine yummy food (salad not included) & visiting my old school fete.

What are you all doing this weekend?
Lots of love
xxx


Wednesday, 3 July 2013

All in ya head

Hi Guys!

This is my second attempt at this blog post - the last one deleted itself. Not happy about that!
So, here we go again.

If you have read my last post you'll know I have had a tough few days recently. The tramadol has been doing its job, and has allowed me to get a bit of rest, which has been brilliant. I still struggle to get off to sleep but I soon get so exhausted that I drift off and the sleep I actually have feels more restful. It has also slowed the output of Margaret down, meaning I don't need to get up in the night so much. The pain is still there, so I couldn't wait for the nurse to come yesterday.

I had to lie out on the sofa, so she could have a proper look at Margaret. Mum was at work so Dad was there with me for support and to help explain everything. I am rubbish at telling people, mainly medical people, how bad things are and how much pain I am in. I tend to give in to what they say or think and don't stand up for myself enough. This, without a doubt, has meant that over the past year things have at times gotten a lot worse than they needed to be. Now, when I need to have key conversations with nurses, doctors or surgeons, I try to have someone else there with me, as a back up if needs be.
My stoma nurse had a look at Margaret, and felt around her, which had me practically jumping off the sofa. It was then that she told me that there was nothing wrong with her. The wound was starting to heal and there was no reason that she could thing of for my pain. Of course I was relieved that she was healthy and healing okay but also concerned as to why I was still in so much pain.
She gently suggested that sometimes when it has been sore in the past, the pain can be psycho-symatic, basically in my head. I can see how I was always expecting the pain and was very tense a lot of the time with anticipation. But I knew that the pain I was experiencing was definitely there - I didn't know what to say! There was nothing left to see or do, so we put a bag back on Margaret as Dad went out to answer the phone.
We then sat down and had a chat about my diet, it was at this point that we had a brain wave. It turns out that I have been eating a lot of acidic foods. Of course I have been avoiding oranges and lemons but have still been enjoying foods such as tomato and rocket. I have in fact been eating some acidic with every meal. My output it still quite quick meaning it is full of stomach acid, this a long with with acidic foods has been burning my skin. The output has been leaking in to the open wound, which is when I have a big overwhelming stab of pain, it is then sitting there until I change the bag (two days) which is causing me the constant stinging. Ouch!
I am now banned from all raw fruit and veg, including salad, which after 24 hours I am already missing. Once I am all healed up I should be able to eat it all again.
I am so glad that the mystery has been solved and that the reason isn't too serious. It wasn't all in my head!
My bag has also been changed. Until now I have had standard, flat bag but I am now moving to a convex bag. It has a raise dome shape on the sticky bit which helps push Margaret out, meaning the output should avoid seeping through on to my skin.



Apart from the seal, the bag is still the same size, it is just a bit more sticky-outy. This may not be a permanent change but until the wound heals, this is what I will be using.

Thanks to the tramadol I was able to get out with Matt for a bit of a shopping spree. Unfortunately, not the kind of shopping trip I like! Rather than clothes, Matt needed to get a few bits n pieces for work. Although it wasn't overly exciting, I really enjoyed getting out.


A rake thats taller than me! I really am a short arse.

I have also had a few more really lovely messages. I thought that once the novelty of my blog wore off I would stop hearing from people but this hasn't happened! I am constantly amazed by some people. Some people have been absolutely amazing, including people I would never have thought would be. People I haven't spoken to in months or even years have gotten in touch consistently and have been amazing. Others, who I would have expected to be right there haven't been. I think part of the problem is how long I have been poorly for, frankly the novelty wears off. Without feeling sorry for myself, visiting the sick girl does become boring and I know that. It is so true that you find out who cares and who is even thinking about you when you are poorly sick. 



I will leave you with this message in Haribo from Daniel, he gave it to me at about midnight, when I was stuck wide awake. My kind of message!

Lots of love
xxx

Monday, 1 July 2013

Poor Old Margaret

Hey Guys,

After a long time of putting on a brave face and slapping on a smile I finally cracked on Saturday morning. I have been plodding along, since I had the stoma separation, hoping it all gets better but have been in a lot of pain on a daily basis. I have been taking the maximum dosage of paracetemol and trying to kid myself that it is all getting better. With every bag change both the stoma site and the skin surrounding it was becoming increasingly painful. The actual gap has been closing and there was no evidence of infection that I could see, so I just assumed it was normal.

I hate making a fuss and am not very good at saying when enough is enough. I just keep on going until I crack. The last straw came after I spent the night constantly coughing and blowing my nose. The pain around Margaret became excruciating. I couldn't straighten up when trying to walk and when the stinging/burning pain got really acute I was frozen in pain. I think it took having this cold and feeling down right awful to give in to how bad I have felt; no more brave face for Gabi.


Me, very uncomfortable.


Mum rang the hospital who said we had to call 111 and I would be told what to do from there. I did this and spoke to such a kind lady who took all my details down and asked lots of questions. The questions required Yes/No answers, and each answer I gave led on to the next question. My answers led to a notice saying I needed a transit ambulance to come pick me up and take me to hospital. I was so shocked and my "please don't make a fuss" head came back. The thought of being taken to hospital via a transit ambulance is mortifying. After speaking to my Mum, the lady agreed that an ambulance wouldn't be sent but I had to be seen by a Dr within two hours.

The local hospital then gave me a call and I set off with my Mum for an emergency appointment. The Dr was so lovely, I hobbled in looking down right horrific. My face puffy due to steroids, my hair scraped back in to a bun, one blood shot eye, a completely blocked nose and a croaky throat. I was definitely not looking my best.
Mr Dr went through my symptoms and gave me a sympathetic look, telling me I was clearly trying very hard to keep on going. He made a very good point, saying that they could very easily treat the pain but what was more worrying was why I was in so much pain... something I strangely hadn't given much thought to.
He was concerned that three weeks on from surgery it really shouldn't be this bad.
He then wanted to have a little peep at Margaret. I sat there, holding myself awkwardly, trying to stop the pain as he had a good look. He poked around the area and I tell you I nearly hit the ceiling the pain was so bad. It really did take my breath away, and he was only pressing very lightly. He noted that the whole area around Margaret was swollen and slightly red. To look at, Margaret didn't look too awful or horribly infected but Mr Dr was concerned that there may be underlying infection underneath the skin.
I have taken a photo of poor old Margaret, but I'm not sure if you guys really want to see her, in all her ugly glory...
Mr Dr bought in his colleague, Mr Dr 2, who enjoyed having his turn at poking around (as you can see Margaret was very popular) sending me into agony again. Poor guys, they were so gentle and so kind but the pain was crippling. They did a swab of the area and had a chat about the best course of action whilst Mum and I put a bag around Margaret.
Mr Dr prescribed me two sets of antibiotics and my old favourite, Tramadol, for the pain. I also had a very kind telling off. He told me that I should never again sit around in this much pain, or with an infection, especially not after surgery. Infection can turn really dangerous and really nasty, very quickly.  I have definitely learnt my lesson that sometimes it really is okay to make a fuss. I keep going and keep going until I crash and then it is all much worse than it could have been.
I was sent home under the instructions that if I did not feel better within 12-24 hours I would have to head back up to my surgical hospital to see the surgeon or someone more specialist on the colorectal ward. This is something I really do not want to have to do.

I am a bit concerned about the Tramadol as last time the side effects made me feel so weird and nauseous. It makes me feel like my arms and legs are floating and not attached to my body. I did work out that I need to have food in my stomach before taking them other wise they really make me want to be sick.
Despite their nastiness I am hoping that they will let me get some proper rest.
Since leaving hospital I have yet to have a good nights sleep, and I am a girl who needs my sleep! I barely get into a proper sleep before having to wake up to empty the bag, this is happening at 1am, 4am and 7:30am... Each time I wake up, I am instantly aware of the pain and subsequently it takes me about half an hour to get back to sleep again. I cant lie on my side which I find so so irritating. I wake up exhausted. I am carrying myself so awkwardly to try and alleviate the pain, causing me cramping muscles all up my neck, back and arms.
I really am in a sorry state.

After hospital I spent the rest of the day under a quilt on the sofa, feeling very sorry for myself. Luckily I had my trusty companion by my side.


My brave face and Flynny dog

Sunday was in general a much better day, although the pain had not improved I was in a much better mood. It is amazing how a bit of sun can make you feel so much brighter. I think my cold was also starting to lift, so I wasn't feeling so poorly. I slept in until 12:30, which I think is my record since I got out of hospital. Although my sleep was disrupted, I just stayed in bed and tried to rest as much as possible. My brother was playing an end of season game at a football day and I really wanted to get out of the house. I dosed myself up on tramadol and headed there with Matt, Mum and Dad. The idea was that Dans football team played the coaches and committee, but they were down on a few played so Matt ended up joining in! He obviously wasn't expecting to play so was running around in pumps and jeans against a load of 16 year olds. Dad headed home to prepare the BBQ and Mum and I sat, relaxing in the sun. Even though I wasn't doing much, it was just nice to get out of the house, do something normal and be amongst people. Now I have a very dodgy history when it comes to watching ball games, I have been hit on the head more times than I can remember. Somehow the ball always finds me, everyone always finds this hilarious, but I can tell you its blimen painful! Luckily, I got through the match with no football attacks. 
As the day wore on the pain got really bad, it reduced me to tears it was so acute. Being in pain is extremely exhausting, and quite scary. I find being told I shouldn't be in pain, really worrying - what is going on in that tummy of mine?!




Me & Matt, Jakey being cheeky & a few snacks before the BBQ - all these things cheered me up
after a rubbish time. 

Thank you all for your continued love and support, it really gets me through. I have also been trying to spread awareness for this disease as much as possible. If you could all share, RT or pass the blog on I would be so grateful. The more people that read it, the more people will understand the disease and the stigma attached to having an IBD or an ostomy will be gone. 

Lots of love 
xxx