Friday, 28 June 2013

Are you feeling better?

Hey Guys!

Well, on top of everything I have come down with a stinking cold, thanks to my wonderful boyfriend!...
My throat feels like I have swallowed razor blades, I have gone through a whole loo roll, blowing my nose, in less than 12 hours and I have a temperarute. Safe to say I am feeling pretty awful. The problem with having an IBD and the medication you are often put on, is that your immune system is shot. I am actually on drugs called "immunosuppressants" which says it all huh! This not only means that I catch everything going but also that when I catch a common cold or bug it can turn nasty much quicker. A cold which has made Matt feel pretty rotten for a couple of days could knock me for six for double the amount of time. Lovely jubly!
Having to constantly blow my nose, cough and sneeze is also proving very painful for poor Margaret, I am scared I am going to do some damage to her but I am hoping she is a bit stronger than that!
This bug has meant that I have had to cancel seeing my friends, which I am gutted about.

I was recently asked by an anonymous reader, what my thoughts and experiences were with managing my disease with diet. Obviously being a bowel disease, diet is a very important factor. However, I personally do not believe it can cure or treat the disease on its own. If this were possible, I would obviously be doing it and Drs would be promoting it. Instead, my Drs have barely touched on my diet and I have never been referred to a nutritionist. I have noticed that what I eat can effect the severity of symptoms, for me this mainly comes down to lactose, but I have found that once out of my system it goes no further. I do believe that food and diet is important but only alongside traditional medicine. By eating the wrong things, I aggravate my symptoms rather than cause them, which is a big difference. This does however mean that at times I will treat myself to naughty foods, some people choose not to do this, but for me I believe you only live once and sometimes a few stomach cramps or a difficult night is worth it - especially knowing that it won't cause me any lasting damage - as I said, I love my food!
Of course, this is only my experience and others may disagree. Over time I may change my mind and start cutting out foods completely, or focus more on diet, but right now I have found a way that suits me.

A few days ago I stumbled across a fellow IBD sufferers blog, her name is Sara Ringer and she is American. She has been through a lot with this disease and still remains positive and vlogs her experiences with an IBD. Whilst reading through her posts I came across a section which captured my thoughts perfectly. This pin points my thoughts when people ask if I am feeling better...

"There is no better because there is no cure. There are just varying degrees of how bad it is and when it's less bad than normal then to me that's good. We have to adjust to what is normal, or good, or healthy because to the average public they'd never be able to put up with what I go through daily"

When I am asked if I am better, I never know what to reply.
"Yes, today, right now I feel better than I did yesterday but next week or tomorrow or tonight I might be feeling worse again. It is not a steady journey of getting better, I have set backs and good days and bad days. Yes, I feel better than I have done but am I better no, my 'better' symptoms are your "ill off work". I am still in some pain or am exhausted even on my 'better' days."

But you can't really say that to everyone, I think their jaws would hit the floor. I know they only mean well and it is the right thing to ask someone who you know has been poorly. It is just a hard thing to answer. It doesn't help that Crohn's is a hidden disease. From the outside I can put on a brave face, slap on a smile and nobody would know that I was suffering. This means that it is very easy for people to forget I am sick, and that actually it is pretty bloody awful. I thin for many it is a strange concept that I don't just 'get better', they can't get their heads around it and can't possibly imagine being un well, every day, for months of even years at a time.

Last night we, along with 1699 other homes, had a power cut. Like a little kid I found this strangely exciting until I realised that meant no internet and that my programs wouldn't be recorded.

Matt and Dads reaction was to go to sleep, which left me awake and bored and darkness set in. It was then that it dawned on me, I would have to sort Margaret out in the dark. I prayed that the electricity would return in time but I soon realised it wasn't going to and I had to face emptying and cleaning the bag in near pitch black, with not even a street lamp for guidance. For months I have had a flashlight app on my phone for times like these, but on Wednesday I deleted it, always the way!
I managed to do the whole thing, in the dark, on my own! I am very proud of myself. Things could have gone so much worse, I dread to think.
We also have a strange blip in our back up alarm system which means that when the electricity goes off, so does the alarm, for 20 minutes. Luckily, it only sounds from the outside, which for us inside isn't too bad but our neighbours aren't too happy. The alarm also sounds when the electricity goes back on, which in this instance was at midnight! Thank god, we got the code to work!

Last night it was also my brothers prom!

Doesn't he look smart! I felt like a proud sister, and even went with my mum to drop him off at his friends house, where they were all hopping on a London double decker red bus to arrive in style. I mainly went so I could be very nosy and look at all the girls dresses!

I will leave you with the newest bunch of flowers, these are from my Auntie and Uncle and are gorgeous, they came with a lovely vase too - which I am so happy with! They are so pretty and arrived in a HUGE box!

Lots of love

Wednesday, 26 June 2013

Busy Days and the Morning After

Hey Guys!

A few days ago I came across this amazing film, released by - the GI Society in Canada. It is a truly brilliant animation which explains IBD simply and perfectly. I urge you all to watch it and if you are an IBD sufferer to check out their site. Although it is based in Canada it is still full of very useful info! Canada has one of the highest rates of IBD in the world, so they are a great source for information and help.

& the AMAZING film

Now here is my Wednesday list for you all:


1/ Paint my nails
Even when you are stuck in pyjamas, your hair is dry and brittle and you have dark circles under your eyes, having your nails done is an instant pick me up. It is a flash of colour, that makes me feel like my old self. I also find it incredibly therapeutic, to make my nails all pretty again.

2/ Eating
I am not ashamed to say I am a bit of a foody. Food is very important to me and dictates my mood probably more than it should. If I am craving something specific or there is nothing that nice in the cupboards I am not a happy girl, I get so grumpy when I haven't eaten. I'm sure Matt will back this one up! If I am ever a bit snappy he always says, "Are you hungry?" - which of course makes me even moodier! Poor guy!

3/ A bath
As I have said before, I love my baths. They always relax me and make me feel better when everything is a bit rubbish!

4/ Bake
Baking always makes me feel good, and watching people love and eat my baked goods makes me very happy. It's shame that I can't do it from my bed, but when I'm feeling up to it it's a mood booster.

5/ A hot water bottle
I am sucker for a hot water bottle. It doesn't seem to matter what time of the year it is, I always love a hot water bottle. They not only ease pain and relax my tummy muscles but I also now associate them with comfort, so they always make me feel better.

6/ Box sets
When I am down, poorly or in pain I find a good box set invaluable. It is so easy to get lost in a box set and forget about your own world for an hour (or 10)...

7/ A hug
Nothing beats a hug.

8/ A walk
Now in recent times I haven't been able to walk very easily, and I wouldn't call myself an "out doorsy type" but I do like a nice stroll. Especially if there is a pub at the end of it! My Mum has always said, if I'm feeling down, "Get out of the house, go for a walk, get some fresh air" - and it definitely works.

9/ Magazines
I am a magazine lover! I often wait until I can buy a months lot in one go and read them all one after the other. I rip out pages I like and clothes I want and I have a file of shoots I love. The geek in my definitely comes out, as does my love of the fashion industry.

10/ Matt
No matter my mood, Matt makes me feel better. He makes me laugh every day, even if he is just being so frustrating! He doesn't let me wallow or feel sorry for myself, his fail safe answer is, "Oh babe, what are we gonna do with you, it'll be okay". He is my rock and my best friend. He doesn't let me take life too seriously, and reminds me that there is more to me than this disease.
He will chat away about his big plans or ideas and I am there to bring him back down to earth; we are a mighty fine team. I would say we bring out the best in each other and I am an incredibly lucky girl to have him in my life. He is very lucky too of course!!

Yesterday I had the busiest day in months! I had already arranged to see Harry and his lovely girlfriend, Phoebe. They picked me up and took me out of the house - which in itself was very exciting. We wandered through town, had a very cheeky McDonalds and sat outside a coffee shop in the sun. It was so lovely to feel like an actual human being, we barely spoke about the bag, Margaret or Crohn's which was so nice. I also had the best drink! An iced, strawberry lemonade. I am supposed to be drinking a ridiculous amount of fluids a day and have been doing so badly at it, but this would get a lot easier if I could have one of these every day!
I got home on a bit of an energy high, I blame the sugar in my wonder drink, Matt had some brilliant news about his work and was really keen to talk about it all. So I decided to go on a dog walk with him and my three gorgeous woofs. Initially my plan was to wander with him for the first 15 minutes then turn back and let him continue on his trek, but I felt good so kept on going. Half an hour in, Margaret was not very happy and was seriously aching, I was glad when we got home. Not that I had long to relax as an hour later I was out of the house again, for Matt and Hannah's Dads 50th birthday meal. It was a surprise at a lovely restaurant, the food was great and it was nice to dress up but I was exhausted. When you are feeling shattered it is so hard to put on a smile and chat with strangers who have no idea. I also had to sort Margaret out, out of the house for the first time. Which was nerve-wracking but went fine! Now that I have done it once, I think I will be a lot more confident in the future.

Matt and I ready to go out

It is safe to say I massively over did it yesterday, I am now so drained and achey. Last night my bag began peeling off, and my stomach became painful and bloated. Margaret was very sore, and I had to take pain killers to get to sleep. Today I have had to cancel on seeing one of my friends and I am having a bit of a bed day. I think that is my lesson learnt!! When you start to feel a bit better, it is very easy to get carried away! I now promise myself to take it a bit slower, even if I do feel okay. 

I also thought from now on I would stick to a schedule with my blog; as much as I can, I will be posting on Mondays, Wednesdays and Frida; with Wednesdays including my lists. That way all you lovely readers will know, roughly when the next post will be coming! If you are a regular reader I would really appreciate it if you could subscribe to my blog, that way my new posts will turn up in your inbox - you'll never miss a thing.

Thank you all again, for reading and your continued support! 

Lots of love

Monday, 24 June 2013

A Very Eventful Morning & My Bag

Hi Guys!

A few days ago I had a bit of an eventful morning. As you know Margaret has been playing up, and on this particular night I had to wake up to sort her out and empty the bag at 1:00am and again at 5:00am.
At about 8 I woke up and noticed that the bag surrounding Margaret was huge, I opened my eyes to find my first ever leak. I will spare you all the details but lets just say it wasn't very pleasant.
I don't know why I had woken up but thank god I had. Up until now setting my alarm at set times has meant that problems like leaks have been avoided. We are wondering whether I have had a bit of a stomach bug as Matt has also been feeling un well. Speaking of Matt, through out the whole time this was going on, he did not wake up once. How, with all of the commotion, cleaning up and disruption, I don't know. But I love him for this.
Leaks are not supposed to happen and there are many products out there to stop them happening.
I immediately woke up my Mum to help me out as it was turning in to a bit of a nightmare. My Mum is amazing, she never fails to be right by my side when I need her. Her nurse training is a definite plus, she doesn't get grossed or freaked out by all the goriness so I never feel embarrassed. I think that is where I get my practical head from, none of this has ever grossed me out. I can openly see anything and not be disgusted. I have changed and emptied the bags and dressings by myself pretty much from the start and am not really phased by any of it. In fact I find it all pretty cool!
I couldn't imagine and have never had to do any of this on my own, and that is massively down to my Mum. I am surrounded by an amazing family and every one of them helps me get through everything in their own way, which I am truly grateful for.
After everything I got to shower for the first time with the bag off. It felt amazing! I was so worried that the water would hurt Margaret or the wound around it, but it didn't at all. If anything it was soothing and it allowed me to get the whole area really clean, which is so important. It felt great to be free, and allow my skin to breathe, I also looked in the mirror with the bag off, for the first time since I was in hospital. The first time I did this I was horrified that this is what my body looked like and felt so awful about myself. Since then, the swelling has pretty much gone down and I feel a lot like my old self, I actually already feel really attached to Margaret. Is it weird that I talk to her?
I am not bothered by having her there as she really is quite small and low down for a stoma. The part I am still getting my head around is the bag bit, but I will get over this and when I can move on to a smaller bag, I think things will be a bit easier and it'll look a bit more subtle.

So here we have it guys, for the first time, this is my bag. I won't show you Margaret just yet as she is still pretty ugly looking (poor thing) although you can kind of see her shadow through the bag. I still have some swelling to go down, but thankfully I am starting to look a bit better. As you can see the bag is really flat against my skin, so isn't very intrusive.

I was also sent a band/cover that goes around my stoma to feel ever more secure. This will be great when I can start going back to the gym or if I want to be really slimmed down under clothes. It reminds of me of those Bridget Jones style sucky-in pants but are a lot more comfortable.

The products out there, to make our lives easier are amazing. I think so far, this my favourite 'freebie/sample', I am going to order another one in black and then I'll be all kitted out! I am also on the hunt for some pretty bag covers! Becky has said she will try and make me one and my Mum will soon be on the case I am sure! I am dreaming of Cath Kidston bag covers...
There are some wonderful sites out there with lovely ladies ready to hand make covers for you to fit the exact size of your bag. They have a selection of their own fabrics available as well as making them in your own fabrics. This is great as it means you can get bags to match your underwear or outfit. 

As I have had a few rubbish days both feeling low and poorly I have spent the last few days in bed, resting or sleeping. I did, however, manage to get myself outside to sit in the warmth and be around my family. My gorgeous doggy Flynn came and kept me company. For months he has been by my side making sure I am okay, he has arthritis too and has been poorly so I think we understand each other. He is the soppiest, most loyal dog!
His brother, Harry dog on the other hand is a compete nut case, and do not even get me started on Jake, that puppy has lost the plot. 
When I got out of hospital Flynn ignored me for a long while, in fact, it is only recently that he started to pay me any attention. Whether he was annoyed that I had abandoned him for a few days, could smell the hospital on me or knew there was something different about me I don't know. Finally he has returned to being my best buddy, sitting next to me in the garden.

I have had a bit of a pamper evening. Well, when I say pamper I mean I put a leave in conditioner in my hair, did my nails, shaved my legs and put on a face mask. But compared to the state I have been in for the past few months this is quite a dramatic change! I love being pampered and am such a girly girl that something as small as this really lifted my mood. I am not one for OTT glamour, I don't wear much make up and don't use fake tan, eye lashes, hair extensions or acrylics but I do like to look after my skin, hair and nails. With the malnutrition this is proving a bit trickier than usual, but I am trying to make the best of it all! I will soon be having my hair cut by my lovely hairdresser, I am unsure whether to grow my hair or have a bit of a drastic change and go short...

I also received some pretty cool ostomy products in the post, a whole load of OstoMists. These cute little spray bottles are scents which you spray in to the bag to absorb any smell. They come in so many different scents its mad! It means that when you eventually empty the bag, what comes out smells of whichever scent you sprayed. Scented poop.
I have yet to use any of these but I have had a little whiff of each one, so far my favourite smells are tangerine, apple and mint! All very light and fresh and nothing like air freshener, which is a plus! What is brilliant is that they do not just mask the small but absorb it. At home it is a lot easier to deal with everything without feeling embarrassed or self conscious, out of the house I can imagine it is a bit trickier, especially if you aren't using a more private disabled toilet. These scents are a hand bag friendly size and stops that embarrassing smell situation.

I have also been doing some more writting with a few exciting guest blogging and media opportunities in the pipe line. I have always loved writing and English was always my favourite subject at school, AS English Lit was tough but up until this blog I had missed putting words on paper (screen). My plan has always been to work for fashion magazines, until now I have concentrated on the styling side, helping in fashion cupboards and on photo shoots. This blog has made me realise that writing may be a route I go down, I am scared I wouldn't be good enough but I guess you don't know until you try.
Exciting times are ahead!

Lots of love

Friday, 21 June 2013

The Master Key

Hi Guys!

I seem to be having a bit of a roller coaster of a time since coming out of hospital. It is now just over two weeks since the day of my op and it constantly feels like two steps forward, one step back but I am told this is normal. But, with every negative thing that happens there are lots of positives.
Many new packages have been flying through my door, which makes me very excited!

In these are lots of lovely samples of many different products, I am very excited to test these all out but one company also sent me the most exciting freebie I have ever received. I couldn't quite believe it when I got it!

But this, ladies and gentlemen, is a master key to 9,000 disabled pubic toilets around the UK!! I now have access to most locked loos in public places which is so cool! I felt like I have been allowed in to some secret, underground club that only 'the chosen ones' are allowed in to. Matt of course ruined this idea by telling me they are given to disabled people or people with an IBD and can be purchased for £3. Well that was my bubble burst!
This however, has highlighted a slight issue that I haven't mentioned before.
I hate public toilets.
Now I am sure most people don't exactly 'like' them, but I truly hate them, in fact I do not use them. I will hold on for dear life, until I am ready to pass out, rather than use a public loo. This includes toilets in restaurants, shopping centres, public places, uni and bars. I hate how un clean they are. There are only three toilets which I actually feel comfortably relaxed using, these are my own at home, Matts house and my best friend Beckys house.
I had to get over this little issue when sharing a bathroom in hospital, but even that was a struggle. Now, what is ironic is that as a person with a bowel disease, public toilets are often needed a lot more than normal and now, as a person with an ostomy, they will no doubt have to be used! Of course this hatred is probably very un healthy and something I am definitely going to need to get over ASAP.

*Whilst on this topic I would just like to say that the toilets at Wembley Stadium were so clean, I was impressed so if anyone is reading this from Wembley - good job!

I also ventured out the house recently for a very cheeky trip to Nandos. I haven't had one in ages and was dying for some lovely chicken, the nurses told me to eat what I crave - as if I needed any excuse, so off we went! I ordered my food, settled down and it suddenly dawned on me, Margaret has yet to have spicy... It was obviously too late at this point to back out and I did think
'Sod it Margaret, ya just gonna have to live with it'.

Very subtle picture in the restaurant. 

We ordered way too much food

Now I can tell you that grumpy old Margaret was not impressed with my choice in spicy lunch and did play up later on that day. I am learning that she really doesn't like some foods, some of them I can live without eating and won't really miss, the hassle she causes me out weighs the taste (eg. baked beans), other foods she is just going to have to get her head around as there is no way I am giving them up (eg. tomatoes & Nandos).
I have in fact starting writing one of my lists with good and bad foods. With the amount I eat it is hard to keep track!

Matt and I have also continued on our walks to the garage, something which I never imagined would be part of our evening routine. We pick up some treats, sweets or ice lollies and wander back. The walk is yet to get any easier and I do return really tired, which is frankly ridiculous given what a short distance it is. The exercise I am told is great and keeping on moving will only help me get better quicker, shame Margaret doesn't agree.

With all of this good and positive news I feel bad to have to put a downer on things and tell you some of the not so great stuff! First of all my knee has once again decided to play up, I couldn't tell you why but last night it had stiffened up to the point where I could not bend it past 90 degrees and couldn't straighten it fully. I didn't pay much attention to the knee itself as it was 2am and I was trying to sleep, Daniel then arrived with a hot water bottle for my achey back (what a life saver!).
It was then that we both noticed that it had in fact swelled up again and was quite noticeably bigger than my right knee.
I caked it in my anti inflammatory cream to try and bring down the swelling and continued trying to move it as much as possible. I am so gutted that this has happened but hoping its only a little blip and I have nipped it in the bud before it really gets out of hand. The night continued to be pretty rubbish!  

I am still in on going pain with Margaret, I wish it would ease up as it really is dragging me down. In the day time I distract myself or force others to but at night it is really dreadful. There isn't much worse than lying awake at 4am, having not slept a wink, with pain in countless different places. Some nights are worse than others, with last night being one of the worst. My stomach and back were aching, my knee hurt and Margaret was gurgling and causing me so much pain. By 4am I really had had enough!

It isn't helped by the fact that even if I do drop off to sleep, I have to wake up in the night to sort Margaret out. I can tell you now, it is very hard to remain positive when you are stuck like this, there are moments where I want to burst in to tears and rip the bag off and just pretend to be 'normal'. I can't sleep in a comfy position because the bag gets in the way and leaning on Margaret is way too painful.

I am very aware of the fact that I am probably boring my family and Matt to death with Margaret and my illness, I hate that this has been going on so long and feel like the biggest burden to them all. I hate that every time they ask how I am, my reply remains the same. I don't mean to always be talking about it but right now this is all my life is. This is huge.
I am desperate to start feeling better so that I can get on with my life. Around me everyone is getting on with theirs, Mum and Dad are back to working, Dan has just finished his GCSES, Sean is off on holiday and in the middle of Uni and Matt is busy establishing his own business. My friends are graduating, getting jobs and going out. I on the other hand am stuck. The world keeps on turning and I feel like I am being left behind. I feel like all I talk about is the pain, the Crohn's and Margaret, without realising this illness has truly taken over my life and I hate it. I am so determined to get myself back and to move on from this absolute, god awful time in my life. The future terrifies me, I hate the unknown and after what I have been through in the past year uncertainty makes me very nervous but I know that if I can survive what I have been through already, everything else will be okay. Crohn's has taken enough of my life and I won't let it take any more.

My job now is to take it all one minute, hour, day, week at a time.
Right now I am just praying my knee doesn't get any worse and that the pain starts to subside so I can walk a bit further, sleep a bit better and be out of the house for more than two hours.
I will leave you guys with a snapshot of a lovely mention I had by a fellow stoma owner, Rachel aka @TheStomaBagLady. She tweets, blogs and vlogs herself and in a recent vlog mentioned my twitter handle! Lovely jubly!

Lots of love

Wednesday, 19 June 2013

20,000 Views, Lists, Cards and Baby Feet

Hey Guys!

As I am sure you have noticed, my little blog has had a bit of a make over!
This is because amazingly I have had over 20,000 views! I can't get my head around this as it has only been going about 6 weeks ish! I really can't believe it. Obviously this wouldn't have happened if it wasn't for you all, so thank you so much! Next mile stone 50,000?!
I have added a working About Me, changed a few colours and backgrounds and the biggest change of all, have added a beautiful banner! This is down to my very talented best friend, Becky Hill ( I have of course mentioned her before and she has used her very clever illustration skills to design me my very own title header.
Please let me know what you think of all the changes and what I can do, if anything, to make it easier to use and navigate!

So I have confessed before to being a bit of a nerd, and I am proud to say that there is nothing I like more than organising and sorting stuff out. But my main love, is lists.
I love lists.
I have various list books for different needs and have multiple list apps on my phone; I am also available to guest list for anyone who needs a helping hand.
Because of this I have decided to publish a list once a week, every Wednesday. It won't just be Crohn's and Margaret based but also about me, my love of the fashion industry, shopping and baking. Some may be short and sweet & some much longer. Some may be stuck on the end of another post and some may have their very own post, all to themselves. This might be ridiculously boring, and if so, please do tell me. But personally, I am secretly very nosy and love stuff like this!

I thought I would start this off with a list about me.
Now a lot of you guys who read my blog are my friends and family (hi!), and so already know a lot about me! But I also seem to have attracted a lot of lovely followers, who don't know me at all! You have gotten to hear about my Crohn'sy, medical life and of course, Margaret. But I would like to think there is more to me than Crohn's and Margaret and so thought I would give you a bit more of an insight in to who I am.


1/ Heights
I am scared of heights. I haven't always been afraid, but since I was about 12, being anywhere above 5 floors makes my head spin. Despite knowing this I still put myself in awful situations like going on the London Eye or up the Leaning Tower of Pisa.

2/ I hate puddings
I sometimes fancy a bit of vanilla ice cream but apart from that do not like puddings. Despite my love of baking I rarely eat baked goods and don't own a sweet tooth. I rarely even eat chocolate. The only sweet, desert like thing I love are pancakes...

3/ Pancakes
I once ate 21 large pancakes, one after the other. Lemon & sugar please!

4/ Control Freak
I hate to admit it but I am a definite control freak. I like having a plan, knowing whats going on and feeling in control of situations. I don't necessarily have to be a leader and am happy to work with others but I have to have a handle on things. Ever since I learnt how to drive, I struggle being a passenger in a car. I also hate all public transport, including flying, because I have no control over what happens. I have just realised this is making me sound like a complete weirdo!

5/ Allergies
I am allergic to a lot of things, but the main ones are furry animals (apart from dogs) and peanuts.

6/ Spain
I lived there for five years and used to be fluent in Spanish. 15 years on I have forgotten most of the language, although it does come back when I'm drunk. I can however understand most of what is said to me, I just can't find the words to reply, which is incredibly frustrating. I have however kept my love of Spanish and Mediterranean style food.

Me being a grumpy guts in Spain

7/ I can't run
Now, keen bean readers will remember that now that I have Margaret I want to train for the London Marathon. A slight hurdle may be the fact I do not know how to run. My legs physically do not move quick enough; my body just doesn't seem to grasp the concept of a 'run'. I, in fact, have not sprinted since year 5 sports day when I was 9 - something I am ashamed to admit. I vow for this to change though!

8/ Music Videos
When I am in my car, alone, with music on I pretend I am in a music video. That is all.

9/ Baby Feet
I have baby square feet. I have posted a photo of these beauties before but only when they were swollen. I have tiny toes and they are very chubby. I have been told by a 'children's shoe fitter trainer' that my feet are literally those of a baby. They are squidgy and mushy and can bend in all sorts of positions.

10/ Karate
I no longer do Karate but when I was younger I wasn't too bad at it, winning quite a few medals and trophies. Many who hear this laugh as I am 5ft 2 and probably the weakest person in the world. But! I have won a couple of golds at various competitions including the Karate National Championships, both individually and as a team.


I was also visited by my stoma nurse yesterday! Who is lovely, and said I am dealing with everything so well and doing brilliantly, which is great! She had a look at old Margaret and filled the growing gap with 'healing powder' and stuck a sticky protective ring over the wound, so it was snuggly hugging Margaret. She said I had done a great job of keeping it clean and there was no infection, which is so brilliant, as I really do not need that on top of everything! She also sorted out my order of supplies which is very exciting! I also jumped online and ordered some freebie samples from different companies to work out which products I get on with. I am feeling much better now that I know Margaret is safe n sound; the pain and itching will go once I am healed up although she is very sore from being poked around recently.
My first supplies package arrived today! Which should not have made me as excited as it did.

This lovely big box of goodies came from pelican, along with bags, different wipes and disposable bags they also packed me complimentary odour sprays and a portable bag filled with more wipes, curved scissors, a clip to hold up your top when changing the bag (BEST IDEA EVER) and all sorts of gap filling equiptment. So big thank you to Pelican for these goodies. I have also ordered some freebie samples from a couple of other companies to test out different products; see what I like! Exciting stuff!

After my big vent in my last post I pulled myself together and have shaken off the down in the dumps feeling. I guess bad days are to be expected but I know me and Margaret will be just fine.
Here is a photo of all of my wonderful cards which have made me very happy.

I have also taken daily trips to the local garage to feed my Haribo addiction. It is normally about a 5minute walk but at my pace it takes more like 15. Given how painful it is to walk I can't imagine being able to run or do an exercise class! I was told before my op that it was a long slog of a recovery but I never actually realised how slow it would be. I am nearly two weeks on from the op and still can't imagine doing a lot of normal, every day things.
Matt has been joining me for my short strolls with Jakey, so it makes a brilliant break from being stuck in house, whilst getting a bit of exercise!
I can also now cough, blow my nose and laugh without wanting to cry, it is still painful but nothing like before, which means something must be healing! Sneezing is still horrific, which isn't helpful with hay fever attacks!

I will leave you with this photo of me, sat in the sun feeling a lot happier with myself.

Lots of love

Monday, 17 June 2013

Margaret & I's First Argument and a Goodbye

Hi Guys

So me and Margaret have had our first falling out. We are no longer talking.
I am writing this at 2am. I have yet to really go to sleep because Margaret is driving me crazy. She is so uncontrollably itchy I am struggling not to rip the bag off and attack the area with a toothbrush. I have tried everything to distract me and am now sat up, writing and watching Sliding Doors. I don't know why it is so itchy! Knowing me I am allergic to the sticky wafer, although the area is not red or inflamed. I think it may just be having something permanently stuck there; my skin can't breathe!
It doesn't help that I am also in a great deal of pain, meaning the moment I touch the bag or the area around Margaret, it feels like I am attacking a bruised, open wound... I guess I am really.

I seem to attract complications. My immune system is completely shot due to taking immunosuppressant drugs for years and not absorbing properly for a long time. I have also been on steroids since last December which means my body struggles healing itself. Because of these two factors even though the stitches have dissolved, the skin around Margaret has not healed, leaving me with a gap. Over the past few days, this gap has widened, leaving an open wound. On a recent bag change I also discovered that my skin had torn; clearly it is under a lot of pressure and has now split. No wonder I am in so much pain!! Margaret is also wanting to play a little game of hide and seek and has started retracting back into my body, never a good sign. Luckily my stoma nurse will be here in 12 hours time! I know I can't be dealing with this pain and itching much longer.

I think in my head this is all still temporary & will be being taken away soon. It is as if I am in some weird denial and haven't accepted that this is my life and that Margaret is real and is here to stay. I don't think it has helped  that I still haven't been able to get back to my normal life. Everyone keeps telling me that it all gets better, I soon won't think twice about having a bag & I will get my life back. It is a struggle to believe any of this at the moment.
Frankly, I am bored out of my mind. I am not allowed to drive, am exhausted after a short walk and spend much of my time in a lot of pain. I seem to alternate between my bedroom and the lounge with nothing much in between. I have wonderful friends who have visited me, and the delivery of cards or flowers always makes me smile but I feel like I spend much of my time on my own. Even though I have gained a buddy in Margaret, it also feels pretty lonely.

My hair is also driving me insane. I am used to very thick, curly hair & right now I am left with a dry, brittle mess. I know this is because I haven't been absorbing nutrients for months but it is still incredibly frustrating! It is also falling out like theres no tomorrow. This seems to happen to me with some Crohn's flare ups; but not all of them. The first year, when I was diagnosed, it was so bad I had to wear bandanas to hide the balding patches. In recent years it wasn't too bad but this time it is thinning out a lot.
We don't know why it does this. Some say it is due to the lack of nutrients, some say it is a side effect of the steroid treatment. Others have thought it is due to the huge amount of stress my body is under. Now I am not one to cry or rant or get angry; I rarely voice any frustration about the Disease. My hair dresser once questioned whether my hair loss was my bodies way of releasing all of the stress, trauma and anxiety. All I know is if it continues as it is going now, I am not going to have much left! Just another thing I have to deal with eh!

I have also recently found out that the sticky bit of the bag (the base plate) is also referred to as the FLANGE. A word I can't stand! It is now up there with 'moist' as my most hated words... It makes me shiver to think I have a 'flange stuck to me'!

Now moaning aside (I'm so sorry by the way, I just realised the above sounds like a long depressive ramble), but on to the brighter notes in my life!
My knee is much better! Even though it is still a bit stiff I can now bend it fully which is the most brilliant feeling. I still can't kneel but I can now, just about, walk up the stairs properly - if not a bit slowly. This does mean that despite the pain, I am a lot more independently mobile!!

I also owe you all the biggest thank you, I am just 300 tiny views away from reaching 20,000! Which is just incredible, my blog has only been going just over a month so I am completely blown away by how many people have read it. I can't thank you all enough. I am going to celebrate hitting the big 20,000 with a bit of a blog re vamp - make it extra pretty for you all and maybe have a lovely guest blog post!

I also have some bitter sweet news, tonight I left the house past 5pm to have a lovely girly meal with some of my closest girlfriends. I tried to dress up, cover up the many bruises I have all over my arms from being a human pin cushion, slapped on some make up for the first time in months and took Margaret out for her first girls night. The reason behind the meal wasn't so great. I said goodbye to one of my oldest friends, Choey (Jess). She is jetting off for a year to Oz in two days time; I will miss her a huge huge amount as she has only lived a road away since we were 8; we have pretty much grown up together.

I'll always love my Cho

I'll leave you all in peace now and will come back next time in a much, much better mood. 
I promise!

Lots of love

Sunday, 16 June 2013

Naughty Margaret's first trip out.

Hey guys!

Margaret is being a troublemaker! Clearly, I am going to have some issues with my new 'friend'.
You would think after the amount of attention she has had she wouldn't be playing up, but she is.
I changed the bag recently only to discover a gap had formed between Margaret and my tummy skin. It was only down one side at first and it looked like the stitches had come away or dissolved. I did think this looked a bit odd and so called up my colorectal ward for some advice. They explained that it isn't uncommon and it is called separation; there are various ways of treating it but it isn't an emergency. They advised that I head to my GP the next day to get someone to look at it to make sure there was no infection and that treatment would go from there. So bright and early the following day Mum and me headed to my GP surgery. A place where I feel I have spent much of late teens and 20s, every Dr and nurse knows me; in fact I think a plaque should be made in my honour.
In order for the Dr to take a look at Margaret I obviously had to remove the bag. This would be the first time I would be doing it under a bit of a time pressure and in front of anyone apart from my Mum. Luckily I had everything with me and was very prepared and I did it all pretty fast for a beginner.
Margaret decided this would be the perfect time to continue to spout continuous 'output'. Of all the times for her to be seriously active, it had to be when my Dr is staring at it. Thanks for that Margaret. Poor guy! She is starting to remind me of a child going through the terrible twos or a grumpy pensioner. It was like she had planned to be as difficult as possible. In the end he had to examine her with me holding a wodge of cloth to the opening.
Luckily, there was no awful smell; either that, or I have become immune but I made doubly sure by spraying his room with odour-killing spray.

He said there was no infection and that he thought as long as it remained clean and infection free, I would be able to wait to get a better opinion and further treatment from my stoma nurse next week. Which is good news! It does however mean that I am left in quite a lot of pain until I get it sorted. Having an open gap around a recent surgery site is pretty awful; lets hope I get it sorted soon.
I think Margaret brightened his day to be honest, probably made a nice change from your typical, boring coughs and colds.
I spent the rest of the day feeling utterly exhausted. It is probably the worst I have felt since I have been home from hospital. I think the constant pain makes everything way harder and I spent the day dozing on the sofa or zonked out asleep in bed.
I was once told that fatigue is when you can't hold your arms above your head. I never understood how anyone could not have the energy to even do that until the past few months. It is a tiredness and lack of energy that is hard to explain until you have been through it.

Having a cuddle with my doggy, Harry

I had planned to get my Mary back on and bake something but really didn't feel like it so my Mumma made me a batch instead!

They are delicious! 

In the past two days I have also received two of the mot gorgeous bunches of flowers! One arrived from my lovely next door neighbours, who saw me and thought I looked so well I deserved some roses. 

On my bad day I was also woken up by my Mum with the a beautiful bouquet, which had been dropped round by my friend Becky R. I haven't seen her in so long as she has been on a year abroad as part of her Uni course and she has only just got back, we are going to catch up properly soon but the flowers she dropped by are stunning! Her florist sister, Heather, has definitely found her calling in life and had put together the loveliest bunch for me.

People have worried that I am going to be overloaded with flowers but every single bunch puts a smile on my face! They really do cheer me up and I am so grateful to everyone who goes out of their way to make my recovery time a little bit brighter. Going through all of this has highlighted that there really are some wonderful, kind people in this world; and that I seem to be surrounded by most of them. I have received lots of beautiful cards in the post from such lovely people, it really is the small things that brighten up my day when I'm feeling low. Whether it is a bunch of flowers, a pretty card or a message from a complete stranger; I am constantly astonished by how lovely people are! 

Margaret has also had her first trip out of the house! I went on a little wander in to town with my Mum, for a mooch around the shops and a spot of light lunch. It felt so good to be normal and although initially I was a bit self conscious that others would be able to see Margaret under my clothes, I soon forgot about that and got on with my shopping! We headed to Cath Kidson; which I love & I got a small bag to hold all of my portable Margaret kit; I swear she needs more stuff than me! The nice lady kept asking if I needed anything and was I buying a make up bag; her face was slightly taken a back when I explained it was to carry my stoma kit, but she was very professional and helped me pick one that is perfect!

Having a spot of lunch with Mum and Margaret

One problem I have found with the open gap around Margaret is that when the bag has anything in it, it starts to drag down on the wound, this is as painful as it sounds. The only way I have found to make life slightly less painful is to hold the bag up in my hand, like a little hammock. Yes, in essence I am holding a small bag of my own poo. The struggle comes when I need to use two hands and have to try and convince someone it really isn't gross for them to hold up the bag for me whilst I tie my hair up/do up my bra/pull on a top. Luckily this will only go on for the next few days, until I see my nurse and can have the wound dressed and covered. 

Today is Fathers Day, and so after two days of feeling very tired and worn down, Margaret had her second outing. This time to the pub! Mum, Dad, Matt, Margaret and I headed to a local for a bit to eat and a nice relaxing lunch time as the weather has been pretty awful. It was nice to get out and dressed into my usual clothes! I have decided to take photos of clothes I am wearing, and how I can work around looking nice with Margaret. I'll be posting more of these photos soon! 

Happy Fathers Day to the best Dad ever!

Lots of love

Thursday, 13 June 2013

Question Time with Margaret

Hey Guys!

Like I mentioned in a previous post, I have had a few questions about stomas, ileotsomys and Margaret and I know it can be really confusing. Even I didn't fully understand everything until I had researched it really thoroughly and even now still come up with questions.
So I thought I would try and explain it all to you. I have used some photos to explain, I don't think any of them are gross but if you are a real wuss then you may not want to scroll down! There is a drawn diagram of the procedure, a picture of a healthy stoma, a stoma after surgery and some of the kit, including bags. No poo I promise!
I have said below each photo whether it is me or not, as some of them I have used as an example. 

I have had a loop ileostomy.
This is the type of ostomy that can potentially be reversed. My surgeon pulled up a piece of my intestine through my tummy to the outside world. He then put a little rod under the loop and cut it in half; both ends then get sewn down leaving two openings. One is attached to active bowel connecting up to my mouth. The other end connects to the rest of my now un used intestines. The idea being that the un used section, which is where my Crohn's is, is rested, hopefully clearing up the active disease. The rod is taken out and you are left with one main opening that 'output' comes from and a smaller, flat opening that is not used.

Originally I thought that it was a little tube or something man made that stuck out of you, but it is my real intestine. The bit of intestine that sticks out is called a STOMA. 
The nurse described it to me like the inside of your mouth, it is all the same from there, throughout your whole digestive system. That is why it is pink/red in colour and moist. 

Not me

Here is an example of a bit of intestine sticking out of a tummy. All stomas are different sizes and shapes, so mine may not look like this when it is all healed but this is a nice clear example of what they look like. 

After surgery they look more like this, this is a bit more like what mine currently looks like but once it is all healed it will be more like the one above. Not too pretty!

Not me

Due to it being a loop ileostomy, all of my intestines are still in there. If you have a permanent stoma fitted then that all gets removed.

Whilst you have a stoma, that is basically where you poo from, but instead it is called 'output'.
You have to wear a bag which is stuck on to the surrounding skin to catch all of the output, there are so many types of bags out there and every individual finds one that they get on with. The difference between the bags are the size, shape, where the odour filters are and whether they come in one or two parts, but they all do the same thing.
Most people wear one with a beige cover as starring at your poo all day is hardly pleasant! The bag sticks to your skin with a hole in the middle for your stoma to poke through, you have to cut the hole to the right size for your stoma, which isn't hard at all. Once the bag is on it is up to me how many times I change it, some people do it every day, some a few times a week, some twice a week. Every time you change the bag you have to clean the stoma, which is very weird! There are no nerve endings on the stoma as it is your intestine, so you cant feel it at all! You can strangely be quite rough with it and still have no feeling. Once you remove the bag you through it away.
You have to empty the bag whenever it gets to a third/half full, with the type of bags I use this is done by undoing the bottom and emptying the output in to the toilet, before cleaning the end and doing it back up - the whole things takes 3-5 minutes. 

When I left hospital I was sent home with a bag of goodies and supplies. I was given a number of different bags to try, soft cloths to clean it with, curved scissors to cut the bag to size, odour spray, adhesive remover and some other helpful tools for the job! 

Now I have called my stoma Margaret, but I refer to the whole thing including the bag under the same name as it is a lot easier.
Alot of peoples reaction to me having Margaret is, "Oh but then you'll be better". But having a bag will not cure me of having Crohn's. I still have to take daily medication to stop it flaring up and I will still always have the disease. There are issues and problems that come with having a stoma and my Crohn's still needs to be kept at bay. It should however make my quality of life a lot better!

Having a stoma is not an outcome for everyone who has Crohn's; not by a long way. Some people have to have different types of surgery, such as a resection, and are then given a bag to allow the area to  fully heal. Some people, like me, are given a bag to rest the flared area. Others are given a bag as an emergency.

I have been asked how I feel about having my bag seen by other people. I don't mind, I am happy with showing people if they want to see. As it is on my tummy and relatively flat it will be hidden by clothing most of the time. The main time that I will have to choose whether my bag is seen is when I go swimming or on a beach. I love a bikini as much as the next girl and this is something I have spent a bit of time thinking about. I have bought a gorgeous swimsuit to wear for times when I do not want the bag to be too obvious, there are also high waisted bikinis out there. Personally I do not feel too worried about people looking at my bag, if it can be seen, I am a bit more concerned about upsetting or grossing out people around me. However, I do think that if I am confident and wear my bag with pride, most people wouldn't even look twice. I think I am going to do and wear what I want, and what I feel comfortable and happy in, regardless of what others might think. But by doing this, I have to be prepared for some stares, questions or comments. 

I hope that clears a few things up. If anybody has any other questions then please do ask away!

Lots of love!

Wednesday, 12 June 2013

Home Sweet Home

Hey Guys!

So I am home! It feels so good to be back, I of course had a McDonald's once home, it took me a good hour to eat but it was so incredible. Double cheeseburger, large fries and a coke in case you are wondering!

Mine and Matts home faces!!

I had a long nap on the sofa with my quilt once I had eaten and just relaxed the afternoon away. Dad then cooked my favourite meal for dinner, home made pizza. I tell you after living off nothing much more than toast for a week, Margaret was not going to know what hit her. Poor thing! Again I was the slowest eater in history but it was so good. I set my alarm for the middle of the night to make sure it was all okay, as a bag explosion would not have been pleasant for either Matt or me on my first night home!

Yesterday Hilly (Becky) and Nash visited me, which was so lovely. I hadn't seen Hilly in so long and she came bringing gifts of beautiful flowers, cards, the best playlist of songs ever and a magazine with a free puzzle! She knows me too well, & me and Nashy spent a good while trying to do this children's 60 piece puzzle. It really should not have taken us as long as it did, and we were a bit too proud of the finished thing!

Hilly was apparently not photograph ready

There also seems to be a bit of a theme when Nash comes round, it didn't take long before she was rummaging through my wardrobe yet again! This time it was to find a dress for Ascot! Lucky girl! She ended up leaving with three of my dresses, ready for a trying on session at home; lets all hope I get to see them again! 

My beautiful flowers

It is so nice to start getting all my lovely friends home from Uni. They are all now graduating and I am so proud! It only seems 5 minutes ago that they were all off to Uni! I am a year behind my friends as I did an extra Art Foundation year before starting my degree so still have a year to go.
Hilly is an illustrator, and I love her work so much, you might have seen the card she made me in a previous post. 
Nashy is interested in interior design and architecture, and is part of an exhibition coming up in London soon!
Check out both of their work if you fancy a little mooch, they both have some amazing stuff!

I also had a very exciting post day! Three cards and a parcel. I opened it up to find a beautiful book, Grace Coddington's Autobiography from my lovely cousin, Nic. It is so up my street I can't tell you, I love it, it is full of wonderful hand drawn illustrations throughout. It is such a perfect gift for whilst I'm lying in bed!

Harry visited me again today, a week after last time! So much has happened in the past seven days, it seems ages ago that I was having my starvation day, yet it has gone so fast. I have been feeling really tired today and needed a long nap this afternoon. I know it is only to be expected and I really do have to be careful not to run before I can walk! One big improvement is my knee, I am now free walking with no crutches which has made a big difference. I still have to take stairs one at a time and I can't kneel or bend my leg fully but at least I can get around! The stoma site is itchy, which I have been told is sign of the wound healing but it is driving me mad! It is also really quite sore and you don't realise how key your tummy muscles are until you try and move. Having a laughing fit is insanely painful!

I am also so hungry! I didn't think I would have much of an appetite but believe me, I do. Apparently this is because the intestine that is in use is in super mode and everything I eat is pretty much going straight through me before I have had enough time to absorb it properly. Not that I am complaining, after a week of having little much more than four slices of toast, I am happy to eat everything in sight!

I also thought it might be a good idea to answer questions about having an ileostomy and Crohn's. I have had a few questions already and I know even I get confused by it all. So if anybody has any questions then please get in contact, either by leaving a comment or through Twitter etc. No question is too gross, too silly or too obvious and I'm sure whatever you might be wondering, most other people are too! Once I have a few questions I'll do a post for you all!

Lots of love