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 

XXX

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,
XXX

FAQ!

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
XXX

Tummy Update

Hi everyone,

Again, it has been such a long time since my last post and although nothing huge has been happening I guess things have developed over the last couple of months.

Firstly! I don't know if I've mentioned it before but a couple of months ago I popped back to see my consultant as I found an ulcer on Margaret. I was changing the bag one day, when I spotted a small flat red mark on her, I took a photo (for evidence) but wasn't overly worried. Stomas aren't the toughest things and the smallest bump can make them bleed or cut so I assumed that was probably what has happened. Upon the next bag change, however, the little flat red mark had evolved in to a slightly larger, darker dip in to the flesh with a white-ish centre. It didn't hurt or bleed or produce any other weird or wonderful liquids so I really wasn't sure what to think. As ulceration and active Crohn's has always been on my insides, I had never really seen what it looks like up close, I decided to take to Google to see if I could identify the little thing. BIG MISTAKE! Not only was the list of possibilities huge but the photos were graphic and not particularly pleasant - whatever you do, never ever Goggle Image 'Crohn's Ulcer'...

About a week on, the mark had yet to improve so I took the plunge and contacted my IBD Nurse, sending her my photographic evidence. I'm always a bit apprehensive when contacting my Dr's as in the past it has always lead to more tests, appointments, developments or medication changes - most of the time, things have gotten worse. I have gotten pretty darn great at knowing my body and knowing when things weren't okay, I don't think I have ever received a piece of news that I hadn't already considered and thought was probable. As expected, the IBD Nurse contacted my consultant and I was booked in the following week to be seen.

My appointment day arrived and I went in as usual, my consultant had a new trainee IBD male nurse with her, I introduced myself before talking through my little discovery and removing the bag to show them what it looked like. I always find it really bizarre, that with this kind of disease you meet someone for a matter of minutes before whipping out a private part of your body. 'Hi my names Gabi, now have a look at the intestine sticking out of my stomach'... but I guess they are incredibly used to it and it's pretty impossible for me to be embarrassed anymore.

My thoughts were confirmed and Margaret, the little bugger, had grown an ulcer. This was not the greatest news. Margaret was placed where she was so that all active Crohn's (ulcers) were below her, thus giving that diseased part of the bowel a chance to heal. This discovery showed that there in fact Crohn's above Margaret (and on top of her) meaning that the disease had moved places/spread and my current medication wasn't doing its job properly. Luckily, from the ulcer we could see, and the minimal stomach cramps I was getting, it was easy to assume that the flare up wasn't severe and easily solvable. It was this appointment that lead to the disastrous MRI scan that I wrote about in my last blog post.

A couple of weeks ago I went back to go over all my test results. The good news is that it doesn't seem to be a huge flare and the little ulcer on Marge has disappeared, the bad news is that my Humira injections have been put up to every week again. This isn't a huge deal but is a bit of a faff and nobody likes sticking needles in their stomachs! The other repercussion, which although not mentioned by the Dr's I feel is very true, is that the likelihood of me having Margaret reversed has gone even lower. If my body and the medication I am on can't hold off the Crohn's with Margaret it sure as hell won't be able to do it without. I know I've already been told that it's probably not going to happen but every bit of news like this just makes that all the more real.

On the next post, I'll tell you all about the story of my wobbly joints....
G xxx

My interesting morning...

Hi everyone,

I know it's been far too long since my last post, but life has taken over! I will update shortly but first I wanted to tell you about my rather 'interesting' MRI scan I had this morning.

I received my appointment letter about 5 weeks ago and rang straight away to inform them of Margaret in case that changed anything about the scan. Having a small bowel MRI involves drinking a lot of a pretty grim drink in order to see how it moves through your bowel. You are then given a contrast via a cannula in your arm, so the MRI picks it up. I was assured to come along as normal, with the only difference being that I would be given less of the drink.

I arrived bright and early this morning with my Mum, ready for what I thought would be a pretty easy, hassle free scan. The knowledge that I would be drinking less of the nasty tasting stuff and the fact I have had now had countless MRI's meant I wasn't nervous. On arrival I went through my medical form and was presented with a jug, half filled with orange liquid. I did as I was told, downing a cup full every couple of minutes to ensure that the whole thing was gone within 20. The drink isn't pleasant but is bearable, I've had it many times before so managed to get it down with relative ease.

Once finished I shuffled on through to the scanning room and hopped on to the MRI bed. A fairly weighted guard/brace piece of equipment was then strapped to my body, leaving my legs free but my arms stuck down my sides. It was a snug fit but not uncomfortable. It did however mean that there was quite a heavy item pushing down on my stomach... and Margaret. It did briefly cross my mind that this may not be great for her, but I didn't think much of it, as they knew all about Margaret.

I was given a buzzer to hold in case I needed the machine to stop and was then fed through in to the MRI scanner. I am not claustrophobic but wouldn't say I am the greatest fan of being in tight spaces. MRIs however have never bothered me. They are well lit and normally your legs or head are poking out the end - so I've never really felt trapped. No music was played through my headphones this time but I just settled down to lying still for the next 40 minutes.

Whilst being scanned, a mechanical voice tells you to "breathe in, breath out, hold you breath". It was about 10 minutes in, whilst breathing out that I felt Margaret's adhesive slowly peel off and a wave of fluid spill across my stomach and down my side. My heart sank and I frantically squeezed my little buzzer, unable to move either of my arms or stop the flow from Margaret. On being removed from the machine, I discovered that the drink I had been given was in fact a laxative... which had powered through the little colon I use at a remarkable rate of 15 minutes. What had poured out of me was the exact liquid that had gone in and I was covered in orange squash laxative. The weight & placement of the brace and the fact that I had downed A LOT of laxative fluid before lying very still was a recipe for disaster. I was not even half way through the scan and I was already a soggy, bright orange, mess with the bag hanging off my stomach. In short, I looked a complete state. I went out to my Mum laughing at how ridiculous I must have looked and most concerned about the staining all over my new jumper. We did a pretty good job of taping the bag back to my stomach (thank god for my Mum) and after emptying Margaret, had no real choice but to hop back in to the machine for round 2!

Another 10 minutes later and determined Margaret broke free from her tape and poured once again all over me. At this point I thought, 'What the heck' and didn't bother to press the buzzer again. I wanted the scan to be finished as soon as possible and already looked as if I had gone swimming in orange squash so things couldn't get much worse! I continued to lie there and with every 'breath out' instruction more liquid flowed free. I couldn't help but start to laugh at the pure ridiculousness of the situation I was in. Strapped in to a tube with a ridiculously quantity of orange squash pooling underneath me... What had my life come to!
What felt like a lifetime later, the scan finally finished and I had the cannula removed from my arm. I hobbled out to my Mum in an even worse state than we she had last seen me... I ended up being driven home with the majority of my sodden clothes removed, sitting on a bin bag. My Monday morning certainly didn't get off to your average start.
Thankfully I had the rest of the day free to chill out, I felt pretty sick and headachy after downing the laxative and the speed in which it had gone through me meant I was pretty dehydrated - something which isn't great for any stoma owner. I've tried to relax for the rest of the day, my body aches from holding it in such an awkward position for so long and I have generally felt pretty exhausted from the whole ordeal!!

It turns out that a lot of places don't even offer the laxative to those with an ostomy and I would certainly raise this issue in the future. I've never heard of this happening to anybody else in the past but my advice to any ileostomy owner having this particular scan is to explain the possible consequences of mixing a stoma, laxative and body brace...

XXX

"Too Ugly For Love" ?!

Hi everyone, 

This week whilst scrolling through Facebook, a post popped up from The Crohn's & Colitis page, highlighting a show that was to be aired that evening on channel TLC, which would include 2 people living with ostomy bags...

"This observational documentary series follows 10 unique singletons, ordinary people living with extraordinary medical conditions, on their quest to find love. All these conditions can be kept secret during a date, and with that comes a whole world of dilemmas"

(http://press.discovery.com/emea/tlc/programs/too-ugly-love/)

I thought it sounded mildly entertaining. Along the same lines of 'The Undateables' - a show following a people with a range of disabilities on the quest for love. I guess it would highlight these various issues and medical conditions, bring them to the publics attention, showcase a very real problem of having a 'hidden disease'. Nothing wrong with that I guess & it is not the show I really have a problem with. What disgusted me was the title that TLC chose to use.

Too Ugly For Love (?)

(The question mark is inconsistently used but makes no difference. Without it is a statement, with it is asking the public for their opinion.)

Now I am obviously speaking from the IBD/Ostomy stand point but this show includes people living with such things as, alopecia, ostomy bags, severe burns and missing limbs  apparently conditions which OBVIOUSLY deem them far, far to ugly to find or be loved. Cheers TLC!

I would like to think I am relatively thick skinned and resilient - I was able to brush off the title with a laugh and a strongly worded OFCOM complaint. But to the teenage girl who has just had an ostomy fitted, or the terrified man on a waiting list to have one, the news that they could now be considered 'ugly' would be a pretty low and confidence crushing blow, no doubt voicing private worries they have themselves.

Having an ostomy is a huge lifestyle change, it takes its toll and a while to adjust. From my experience, initially your confidence is knocked, your body doesn't look how you want it to and you'll worry what people might think. Then to be publicly told that you are too ugly for love, is nothing shot of vile. 

Some may argue that the show does positive things for raising the exposure of IBD and ostomy bags, bringing it to the attention of the UK public. I would argue that this kind of exposure is far from positive. Portraying those with ostomy bags as so widely different from 'normal' people that they need their own dating show only compounds an idea I hate. Yes I have Crohn's, yes I have an ostomy and aside from going to the toilet in a slightly different way, I am the same as every other person walking down the street. The show highlights an insecurity that is not exclusive to those with medical conditions but effects everyone who has ever had low self esteem, felt insecure or low in confidence - if you ask me thats nearly everyone at some point in their life. 

Judging by the hundreds of comments, tweets and posts in Crohn's support forums I have read today I am not alone in my views. It is also heartbreaking the number of people who have been upset and negatively effected by this title. TLC you should be ashamed. 

xxx

It is also important to note that I am in no way judging the people involved in the show. Marcia who is involved with the show and has an ostomy responded to the outcry with her own statement here - highlighting that she was unaware of the shows name until filming was almost complete. Antony, who also features with his ostomy, explained in his statement that the shows name was changed last minute. I think they're very brave and were only ever taking part for positive reasons. 

My 2014 Roundup!

Hi lovely people,

It has been a while since my last post but I have been insanely busy recently!
Firstly an update on the whole Margaret / Permanent / Reversal / Surgery situation...

About a month ago I had an appointment with my consultant where we went through all prior test results and future plans. It was decided that, as I thought, no reversal would be happening any time soon. I have active Crohn's in two areas of my digestive system - this means it would make no sense at all to reverse Margaret as it is currently the only thing keeping me symptom free. Without it I would be straight back to being really poorly - not something I want to happen! It was also pointed out that due to the damage to my 'perianal' area (due to being so ill before) there would be worries that my bowel would not work quite right again and I may suffer with difficulty controlling it... again, something I really do not want to happen! Due to all of this, reversal (at least for now) has been ruled out.
All is not lost though, I am going back to see her in 4/6 months time to re assess the situation. Although the prognosis is not looking great, at least it hasn't been 100% ruled out quite yet... Between now and then I have to cross my fingers and toes that the Crohn's will magically heal itself or they find a shiny new cure!

Now! As we head towards 2015, it is only normal to look back at the past year, and what an amazing year it has been!!
In the past 12 months I have graduated, lost 2 and half stone, successfully completed a Kickstarter campaign, gone on Margaret's first holiday and set up my own business... to name just a few things!

Chroma has been doing pretty darn well these past few months, hence why I've been so busy! It is now a profitable company, with hundreds of orders every month and has shipped to countries world wide including New Zealand, Singapore and Turkey. Chroma has been featured in a whole list of vlogs and blogs including some of the biggest in the UK including Sprinkle of Glitter, Tanya Burr & Lily Pebbles and will be included in TATLER magazines 2015 Valentine Day's Gift Guide...!!!!?!!!! All a bit insane but so amazing.

Looking back at my graduation photos also makes me really proud. At the time I was still gutted about just missing out on the 1st I really wanted and I found the actual day really stressful (thanks to Margaret) but now looking back I can fully appreciate the whole thing!

2014 has without a doubt been one of the best years of my life, I have had more ups than downs and compared to a year ago today, I am very, very happy! Roll on 2015!

I hope you all had a very Merry Christmas and a wonderful New Year!
Lots of love
xxx