Thursday, 28 May 2015

Knee Update

Hi guys!

As I said a while back, as well as few goings on with my tummy, my knee has been playing up a little bit. Nothing major but at the start of the year it was really starting to ache, the gym seemed to be aggravating it and on occasion it was swelling up. I mentioned this to my consultant a couple months ago and I was referred to a rhoomatologist. The referal came through and I went up to my usual hospital to see him.

I wasn't really sure what to expect as most of the time there is nothing to physically see but I described my symptoms and then the Dr & an as siting physio put my joints through a series of movements. Bending my knees and elbows, neck and back. One exercise had me, feet facing forward and my shoulders turned round to face the opposite way. Apparently most people can only get a quarter of the way round. I, on the other hand, could go nearly 180' so my shoulders were pretty much facing the back and my feet, the front - I felt a bit like an owl!
With no stretching or warming up I was also able to put my hands flat down on the floor and my head on my knees, with my legs straight. I've always known I was flexible, I danced until I was about 15 and did gymnastics as a child. My joints have always been able to bend or do strange things but I didn't realise this was widely not normal. The Dr informed me I have joint hyper-mobility syndrome. For some people this effects their wrists, hands or thumbs - we all know the kid at school who was "double jointed" - but for me, it effects most of my joints.

The Dr explained even the way I was sat, was straining some of my joints with out me even knowing. Just because I can hold/rest in a certain position, doesn't mean I should. It doesn't put me in any pain, so I never think anything of it - but for others it would and they would stop. Even though I'm not in any pain, I am still straining my joints.

When talking about my knee specifically, he thought that an old ski injury had weakened the joint and so when I was unwell and was having a Crohn's flare my body was attacking the weakest joint. The way to help this, is to strengthen all the muscles around my knee joint to create more support. Right now its a wobbly joint, which explains why my balance has been awful for the past few years! I was also sent for an MRI of the knee to make sure there wasn't any old damage from the skiing injury. Thanks to the lack of laxative, this MRI went a lot more smoothly and Margaret didn't explode... which was great news for all involved! The results showed that there was nothing serious going on, so no key hole surgery would be required. It did show inflammation however so I have now been referred to a physio to see if that helps.

I have since been heading to the gym a lot more and have had a programme created by a personal trainer, specifically to strengthen my leg muscles. The work out is tough and leaves me struggling to walk up and down stairs afterwards, but my legs hurt in a normal 'after-a-work-out' kind of way, rather than a pain in my knee, which is really encouraging.

The whole thing has explained a lot, and past injuries or joint pain I've had from my early teens, now makes a lot of sense. Hopefully by strengthening the muscles around my joints I will be able to improve any Crohn's induced arthritis I suffer from in the future. Well, heres hoping!

Lots of love,

Sunday, 24 May 2015

things are a-changing

This post isn't so much Crohn's related but is something that has played on my mind for quite a while...

From the age of 4 you go into school and are immediately surrounded by fellow children, all eager to make friends. This continues all the way up until you're 18. You obviously move to secondary school and some people change schools or relocate, but each time you are generally set up with a group of people - all your own age, in the same place, for hours each day & you make friends. Again, when you go to Uni, you arrive on mass, with hundreds if not thousands of others, all eager to meet and talk to new people. & then you graduate.

Suddenly after 18 odd years of being on the conveyor belt of life you are flung in to the 'real world'. Many get a job and keep on moving forward. However, if like me you don't follow these steps you take an alternative route whilst everyone else seems to move forward around you. Some people decide to take a year out, move home, can't seem to get the job they want or simply don't know what they want to do yet. Some, like me, opt out of the job hunt & end up going it alone. Don't get me wrong, I love Chroma. I love being my own boss and the huge satisfaction of creating something from scratch and watching it grow and achieve. It does however get pretty lonely. I spend all day, five days a week, on my own. Even at the weekends the vast, vast majority of my school & Uni friends have gone two ways, jobs in London or travelling abroad. This hasn't left many people in my home town, and those that are around are busy working hard towards their own goals. I'm still living at home and so surrounded by my lovely family and I see the few friends still around once(isn) a week. It's funny, however, that even when you're super busy and have a lot of people around you, you can still feel on your own.

I start to doubt myself, watching the onslaught of 'successful' lives on my Facebook, Twitter & Instagram feeds. Suddenly people seem to be growing up. There are engagements, new jobs and pregnancies left, right and centre. Everyones lives are so transient with everyone moving at a crazy speed. Right now is also a time when you start to really work out and see who your real friends are. With everyone spread out around the country and even the world, you don't keep in touch with everyone as easily & that big group of school and Uni friends, starts to get that little bit smaller.

I sometimes look around and can't really work out how it has all happened. I know I have all my own stuff going on too - I'm moving to Cardiff (which I'm finding more and more nerve-wracking every day) and Chroma is steadily growing and taking up a lot of my time. Maybe others looking in, think I've got all my shit together too. But whilst I sit in on the weekend, contemplating heading to the cinema on my own, I wonder if lots of people are feeling the way I do. Everyone relocating, heading off to travel, starting new jobs or still wondering what on earth to do are feeling just as freaked out and lonely as I am...

Tuesday, 19 May 2015

IBD Day - Book for Crohn's

Hi guys!

So today is not only World IBD Day but is also the day that a fantastic book is being launched. 'Book for Crohn's' is a new book that looks at Crohn's Disease from a different point of view, that of the Crohn's community. It is a book compiled by Crohn's sufferers, their Dr's and their loved ones.

When I was first diagnosed I did what we are all told not to do, headed to good old Google and scared myself half to death. Everyone has a different approach to these things but I was itching for as much information as I could get my hands on. I wanted to know every medication, every possible outcome and worst case scenario. I felt like I was preparing myself for anything that could be thrown at me and although in many ways I believe it helped me get my head round it all, it was also pretty terrifying. The internet is FULL of horror stories. Naturally people tend to write about their negative experiences, only posting on forums when things are tough. When things are going great, you don't feel the need to reach out to others for support in the same way. As I read through pages and pages of information, forums & stories, I struggled to work out if what I was reading was 'the norm' or not. At that time and at many times since my diagnosis, I wish I had had this book.

Book forCrohns is filling a gap that is greatly needed. Answering all the questions that you wonder as a newly diagnosed Crohnie. The book starts with looking at Crohn's from the a medical stand point, discussing the basic symptoms as well as areas such as diet, surgery, lifestyle, sex and medical treatment. This is done in the least scary or dramatic way and doesn't fill clinical in the way many medical information sites can feel.
This is followed by looking at Crohn's from the perspective of those living with the disease. This I feel is one of the best aspects of the book. These stories are fantastic, from diagnosis to every day life and going through surgery, employee rights to having a relationship with the disease and it's psychological impact. It tackles Crohn's from all angles. There are also accounts from the loved ones, giving such an amazing insight into how the disease effects everyone else, something which I think is largely ignored! A medical view is also given throughout the book allowing the reader to have a much deeper understanding of each topic. The whole book acts as a complete guide to living with the disease.

I could not recommend the book enough, especially if either you or a loved one has had a recent Crohn's diagnosis. Even us long time sufferers would benefit from having a read! I'm going to be giving it to my parents, to get their perspective but I think they would have really benefited from reading the section written by and for children and young adults with the disease during mine and my brothers diagnosis.

A huge, huge plus point is that all profits from the sale of the book will be going towards funding further research into the disease. I've added a link below to Amazon, where you can buy the book online. I hope that it helps some of you and you find it as positive as I did!

Lots of love

Wednesday, 13 May 2015

Onwards & Upwards

So guys, I have some super exciting news! I am officially moving to Cardiff. Yes, at the grand old age of 23 years and 7 months I am finally moving out of my parents home. Before this blog even started, I did move out for about five months, for just over half of my first year at Uni. Since then, for the past three years, I have happily lived at home with my Mum, Dad and youngest brother, Dan. For a chunk of this time I was pretty poorly and really couldn’t have lived anywhere else. 

Since my surgery and especially in the past year or so, things have been going really well. I am both the happiest and healthiest I have been since before my Crohn’s diagnosis and I have managed to achieve lots of really exciting things. Many of these I wouldn’t have been able to do, had I not been living at home. I have to say aged 18 I never imagined that I would still have been living at home at nearly 24 but I think it has really been needed. Aside from the 18 or so months of being ill, the months after my surgery were pretty tough. I was adjusting to a huge Margaret shaped lifestyle change as well as a particularly nasty break up and needed the comfort and familiarity of home. It felt like it took quite a while to get back to my old self and get some of my self esteem & confidence back. I think it would have taken even longer had I not been surrounded by my family and old friends. Living at home has also allowed me to set up & establish my own business which I never dreamed, in a million years, I would be able to do. 

My parents have been nothing short of amazing, not batting an eyelid at me still living at home. Their love & support throughout everything has never wavered and I am so lucky to have such an incredibly solid support system around me. I know that if I wanted to they’d let me live at home forever! 

In the year since my graduation things have been largely really positive and I finally (kind of) feel ready to move out and on to the next chapter. As excited as I am, I am also utterly terrified. I know I’m going to miss home a stupid amount and it’s going to be a huge adjustment process. But I do feel, if I don’t do it now - it might never happen! It would be really easy for me to sit back and stay settled with my parents and I really don’t want to get too comfortable. I know the longer I leave it, the harder it is going to be... 

So, yes, I will be moving to Cardiff at the start of August 2015. I will be moving in with my brother, Sean, his girlfriend, Caz, & three other housemates. Three girls, three boys in a really lovely house with a small garden and spare room which will help with Chroma. It even has a working outside toilet... It’s like the house was made for me! I will be working from home and of course Toby is coming with me! As silly as it sounds, he is my main worry. The poor little guy is really going to miss my parents and other dogs (something I’m trying really hard not to think about) - he has never known anything different. I couldn’t ever leave him behind, we would both be miserable and I think he is really going to help settle any anxiety once I’m there. 

So there we have it! A bit of exciting (scary) news! I will, of course, be blogging my way through everything and updating you with how I get on. Any tips of moving out would be greatly appreciated, I feel a bit pathetic for being this nervous!

Lots of love 


Sunday, 10 May 2015

So do you still have Crohn's?

I begin this blog post as my last one ended. It is something which has gotten under my skin on various occasions and in my opinion has become worse since having Margaret...

So do you still have Crohn's?
Yes. Unfortunately an ostomy doesn't provide a cure. There is no cure. It is simply a way of managing the disease...

... Crohn's is a hidden disease. Unless steroids make your face blow up like a beach ball or arthritis causes your joints to swell so badly you end up on crutches or in a wheel chair nobody would ever know you were walking round with an incurable, chronic disease. As I have said before this is both a blessing and curse. Being able to appear fit and healthy makes this a hell of a lot easier. There are no pitying looks or people treating you like you're about to break - something which I think I would find quite hard to deal with. In fact, I think despite having had Crohn's for nearly eight years and now having a bag permanently stuck to my stomach, many people forget I even have it. Before Margaret I did too. I guess in some ways this is to my credit. I have never kept Crohn's or Margaret a secret and by being so open about it and living my life as "normally" as possible it seems it is easily forgotten.

But the fact of the matter is, I still have it. Margaret has not changed this. Granted, the majority of my symptoms have largely gone away. She has allowed me to be the healthiest I think I've been since my diagnosis aged 16.
I still, however, have to empty my bag 5 times a day and suffer from irritated & sore skin on a daily basis. My stomach will randomly bloat and I will get some cramping for no reason at all. One of the hardest symptoms however, is how stupidly tired I get. I have to manage my days and weeks pretty well. I have learnt to juggle all aspects of my life, trying not to over do anything. One big night out or a series of badly slept nights can ruin the next day. This is why I often choose not to drink too much or go all out on a night out. A lot of people don't get this and I do get a wind up comment or an eye roll for yet again going for the diet coke. But over the years I have learnt to listen to my body and take it easy when required.

The annoying thing with Crohn's is, this requirement is needed more often than I would like and is not 'fixed' after a good nights sleep or bit of rest. A flare, even a minor one, can take me months to get over. If I was exhausted and symptomatic last week, the likelihood I am again this week. I am not 'better', there is no real 'better' there are just some days or weeks when I'm feeling a lot more like a 'normal' person than others. So yes, I still have Crohn's.

Lots of love,

Sunday, 3 May 2015


Hi everyone!

So... I know a post on my knee is overdue & I do plan to update everyone on this really soon! In the mean time, I thought I might do a super quick FAQ on all things ostomy. The number of people reading this little blog is only ever increasing and I have lovely new readers all the time! Even some of my nearest and dearest don't fully 'get' what an ostomy is all about & an FAQ update feels needed!

Here are just some of the questions I am asked pretty regularly (many by once people have had one drink too many) - it is less about the 'health' side of things and more about the my day to day reality of living life with Margaret...
(All my answers are from my own experiences, I am not a health professional nor do I speak on the behalf of all ostomy owners. Everyones experiences are different.) 

How is the bag stuck to your skin?
- The bag sticks to your skin with a flexible sticky wafer thing called a 'flange' (ewww). This flange has a hole in the centre that you cut in to which fits neatly around your stoma (piece of intestine) allowing it to pop through & collect waste inside the bag. There is an opening at the bottom of the bag which you empty out the waste from.

What does the bag feel like?
- I can't feel the bag on my skin. Thats something a lot of people find really weird, but imagine having a big plaster on your skin! Obviously half of the bag is flapping free so unless I am wearing a stomach wrap or high wasted underwear, the bottom corner can sometimes dig in to my leg. The only times I can feel the bag is when the skin is really irritated, unfortunately for me, this happens a lot of the time. The itching feels like lots of ants crawling over your skin but somewhere you can't quite reach. Imagine trying to scratch and itch with oven gloves on... thats what its like. I have really sensitive skin & seem to be irritated my most things so my skin feels like this at least a couple times a day. Antihistamines help, as does lightly slapping the skin around Margaret. I have to stop myself doing this in public...

Can you feel it when 'output' comes out? (ie. can you feel yourself poo?)
- Nope. In no way, at all. Stomas have no nerves so you can't feel anything. I never have 'the urge to go' or can control how much, when or where my bowels decide to push out waste. I could be sat in traffic, at a shop, watching TV 'poo-ing' away without a clue, it's a doddle! Instead, I empty the bag 5/6 times a day as it fills up.

Does it smell?
- Like when anyone goes to the loo, when emptying the bag the output does smell, nothing horrendous or anything worse than anyone else. Day to day, walking around, you thankfully can't smell a thing!

Can you still fart?
- Unfortunately not. It is something I actually really miss... but obviously my colon is completely bypassed both by poo & gas. Instead gas empties in to the bag and is released when emptying it.

How big is it?
- This depends on the brand or style you use. Mine is a small and so it falls just to the top of my thigh.

What can you eat with an ostomy?
- I can eat pretty much anything. Those who know can vouch for the fact that there is not much that could get in the way of me and food. The only things I avoid are mushrooms, nuts & seeds as they can cause blockages. Popcorn is one thing that I have been advised not to have but cheerfully ignore. I instead drink a hell of a lot of water when eating it & chew really, really well.
I have had to up my fluid and salt intake which is irritating but do-able. I avoid fish or cheese the day before going out as it doesn't produce the nicest smell.

Can you still drink alcohol & go on nights out?
- Yes. Well, I still do. I can't/don't overdo it, I rarely go mad or have more than a couple of drinks at a time. A lot of people don't get this and I do get stick sometimes for yet again going for the diet coke but my body tells me when it's feeling up to it (or not) and I often make the decision to pace myself rather than suffer later.

Can you still swim / do exercise / go on roller-coasters?
- Yes! I can do all of these things and have yet to find something I can't do! I even read an article once on how you can deep sea dive with an ostomy!

Do you still have a bum? 
- Haha, this is something which I have been asked twice, both times by people who had had a little to drink and clearly lost all embarrassment in asking! To me, of course as with most things, there is very little embarrassment and I think a completely valid question! Yes I do. My ostomy is still 'temporary' so nothing has been removed. When it is made permanent, some people go on to have EVERYTHING removed. This would include your rectum etc. & they go on to sew up your bottom end. I'm sorry but even as write this I can't help but laugh. I recently read it being referred to as a Barbie Bum which is the best thing I've ever heard!

So do you still have Crohn's?
- Yes. Unfortunately an ostomy doesn't provide a cure. There is no cure. It is simply a way of managing the disease. This question is something I think I could dedicate a whole blog post to...

Hopefully this gives a bit more of an insight... as always, if anyone ever has any questions they've always wondered no matter how weird, please just get in touch!

Lots of love