A New Battle Begins...

A New Battle Begins...

 

Hello to my gurt lush readers!

(I had a voice recording at my place of work this week in which I had to do a west country accent and I am still loving it!)

Hope that you are all healthy and happy.

 

This made me giggle and smile :)

 

This week's blog reveals the results from my tests and scans and what I will venture in the next chapter of my crohn's disease battle...

 

So my colonoscopy revealed good and bad results. The bad result showed that my crohn's has been active recently causing it to be very sore and scarred which is bad as it means that my current medication may no longer be having any positive effect on treating my crohn's. However, for me this is also a good result because the doctor's have always struggled to directly locate where my crohn's is most active and they have struggled to find evidence of it's activity so in a strange way it's also a good result. So an up and down result really but after what I had to experience with the colonoscopy, I am glad it's showed something of use!

 

The results from my Sehcat scan and MRI scan came back pretty normal which is a good thing as it means that my crohn's isn't currently flarring up but it's also very annoying as it doesn't help the doctor's in finding out what exactly is happening inside of me! I then had a long discussion with my consultant about how I do still get bad day's and that when they appear they are bad! I may have to miss work or Uni and be stuck in bed curled up or I have to take drastic actions like taking pain killers and immodium in order to just get through the day. We also talked about my Humira injections; how long I had been on them for, my dose changes and if I was still beneftitting from them. From this discussion we decided that the best option for me is to change my medication and stop my humira injections and start having infusions of a drug called Remicade.

 

 

I don't know a huge amount yet about the whole process of the infusion but I from responses from crohn's friends it should help out a lot! An infusion of Remicade will involve going to my hospital and having a drip put in for 3-4 hours so the drug can be infused into my body. After my first infusion I will have another one in 2 weeks time then I am not sure of the process whether I then wait another 2 weeks or 6 weeks as my doctor was really confused but basically eventually I will have an infusion every 8 weeks. The thought of having to sit for 3-4 hours on a drip does scare me a lot as normally canulars hurt like a bitch when you move! But I hope that each time I have an infusion I can take my laptop along and blog and take photo's you all as the process happens :)

 

This was all pretty scary but great to know that things are being done to try and help me and I can't thank the hospital, doctors and nurses enough :) 

I was lucky enough that straight after my appointment I headed off on holiday to Cornwall so here's a few of my favourite photo's... 

 

 

Have a wonderful week :)

 

Mwah x

 

P.S. Please do keep sending in questions and comments about crohn's disease, my blog or any of your experiences :)

Miss Moanie Crohnie Needs You!

Miss Moanie Crohnie Needs You!

 

Hello to all my lovely readers :)

 

 

 

I would like to start this weeks blog by saying shit and wow.

This luckily has nothing to do with my crohn's but my response to how many views I currently have of my blog! I am 7 views away from having 1,000 views!!! Ahhh! I really can't believe it! THANK YOU SO MUCH to all of you out there who have taken time to read my little blog about crohn's disease, it's really starting to raise an awareness and makes me so ridiculously happy :D So thank you x

 

Onto this week's blog :)

This week has been a real great but busy week! So sadly I haven't got much time to write a proper blog so instead I am asking you for your help!!

 

 

In 2 week's time I'd really like to do a question and answer style blog and that's where you my wonderful readers come in! If you could kindly send in questions that I can then answer on my blog. It can be about anything to do with my crohn's disease for example does it affect my work life, how do my family cope, what other medical options are available? It can be anything, weird and wonderful are welcome. If you do not wish to ask a question but instead just make a comment or share a story those are more than welcome too.

Be creative :)

Please send them to me via my facebook or twitter account :)

 

I'd really appreciate any input and look forward to reading your responses!

 

Wish me luck for my hospital consultation next tuesday, finally get all my results from my tests and scans and hopefully a new solution for remission can be created. Will keep you informed of the outcome in next week's blog!

 

Have a fab week :)

Mwah x



So I take 4 tablets for this, 2 tablets for this, an injection for this...

So I take 4 tablets for this, 2 tablets for this, an injection for this...

 

Hello Ladies and Gents :)

After a rough week with my MRI scan this week has been a jolly good one!

So this week I thought I'd talk about how Crohn's can be medically treated to make life just that little bit better.

 

 

 

When you are first diagnosed with crohn's disease medication is very much trial and error to find what works best for you to keep you in remission and help with your symptoms. I first started off on a drug called 'Pentasa'. This is mainly an anti-inflammatory drug. However, after several increases in my dosage I found that 'Pentasa' no longer had any effect upon my crohn's. From there I went on to a drug called 'Azathioprine'. I have been on this drug in tablet form for around 3 years and this has had a very positive effect on my crohns (until now :P). I also take a drug called 'Mepradec' in order to control my stomach acid. My main medication currently is my 'Humira' injections.

 

 

I started the Humira injections just under 2 years ago. After a bad flare up my doctor suggested that I start on this drug to try and prevent any further flare ups. The injections are very similar to an epipen. I had a session with a nurse in which I was trained how to inject myself. Within this session I had 4 injections, 2 done by the nurse and 2 done by myself. It's really scary to begin with and you really have to learn how to trust yourself but it wasn't as bad as I thought it would be once I had learnt exactly how to inject myself. I personally inject my stomach around the belly button as I find this less painful but you can also inject in your thigh. The worst thing about it is obviously when the needle goes in as it is a stinging pain but it soon goes away and it's worth putting up with the pain if it benefits my health. I began my course by injecting once every 2 weeks but if I experienced symptoms of a flare up I would have 2 injections during my 2 week course.

 

My current medication is that I have 4 'Azathioprine' tablets, 2 'Mepradec' tablets and a weekly 'Humira' injection :)

 

So this week I have had a great week of getting out and about and forgetting all about my Crohn's disease! I had an incredible day at Splashdown (an awesome water park!!) with 5 amazing guys! We also dined at my favourite restaurant 'Frankie and Benny's' where I had a few cheeky cocktails and we then had a lush evening down on the beach.

 

Frankie&Benny's! 

P.S. I Love You cocktail-which I did!

My gorgeous boyfriend having an evening paddle!

 The beautiful beach!

 

Hope you all have a fantastic week :)

Mwah

x

 

 

Beautiful Day for an MRI Scan

Beautiful Day for an MRI Scan

 

Hello to my lovely readers :)

Well this sunshine is lasting longer than we all expected-HOORAY!

Hope your all making the most of having a proper summer!

 

My dog Rex getting his shades out ready for the summer sun!

 

This week's blog is all about my adventure to go and have an MRI scan but it's also the first blog that as I am writing I am suffering because of my crohn's.

 

My MRI scan is the last of all my recent scans to see whether over the past couple of years my crohn's has become worse or if it has stayed the same. I have had MRI scans previously so I knew what to expect but this time I had to some prep similar to that of a colonoscopy...

 

A couple of day's before my scan I had to eat light meals consisting of food's such as egg's, white bread, rice and cheese (basically beige coloured food). The night before my MRI scan after 10pm I could not eat any food until after my MRI scan the next day, I could only drink clear liquids but I also had to take a tablet called Dulcolax, that's right a laxative!

I won't go into details about this experience but the day of my MRI scan I felt very rough, almost like having a hangover you just can't shift!

 

The morning of my MRI scan I was confined to being at home near the bathroom but also to my bed as I felt so tired and rough I just kept collapsing into a heap on my bed to rest. After 12pm I wasn't allowed any more clear liquids which in this hot weather was not nice! My appointment was set for 3.05pm however I had to be at the hospital 45 minutes early for yet more prep. This prep involved drinking a large jug full of solution which helps to make my insides clearer on the MRI pictures. I was more than happy to drink this solution after not drinking for nearly 3 hours and it was soon gone to the surprise of the nurse!

 

So I was finally taken into the MRI scanner suite...

 

 MRI scanner

 

After removing my shoes and glasses I was asked to lie down on the bed whilst the nurses put a canular into my arm so that a bowel relaxing drug and a dye could get injected into me whilst I was in the scanner. I always find canulars to be particularly uncomfortable but you just got to put up with it for a short amount of time. I was then asked to gently turn over to lie on my stomach with both my arms abover my head (almost like a superman pose!) The nurses then placed panels across my back and strapped me in to make sure I stayed as still as possible whilst in the scanner in order to achieve a clear picture. After putting headphones on so I could listen to my choice of music (Mumford and Sons of course!) and so that I could hear from the team what was going on and any instructions. I was also given a buzzer in one of my hands in case I need to get out of the machine for whatever reason. Once I was all set to go I was moved into the scanner.

 

I will admit that the scanner is bloody loud and it does ring in your ear! And it is scary! The actual sound of the scanner is like lots of different buzzing alarms at different paces and pitches. But through just closing your and listening to your own music and having to focus on instructions about breathing your mind doesn't have time to be afraid. The actual scan is over in no time at all and I was bought back out, had my canular removed (which didn't bleed everywhere this time!) and I was soon free to go.

 

The MRI scan all went well but due to the laxative I am still suffering and it has upset my crohn's making it rather painful and uncomfortable and I am still visiting the bathroom often but hopefully after a good night sleep I'll be as right as rain :)

 

This made me giggle!

 

Thank you for reading and have a wonderful rest of the week :)

Mwah x

 

 

 



Is that MY body?!

Is that MY body?!

 

Hello my loverlies :)

Hope you are all enjoying this gorgeous sunshine! It's lush to finally be having a proper summer. So crack out the shorts, the bbq's and the cider and enjoy this week's blog out in the sunshine!

 

Sat in my garden enjoying the sunshine trying to tan my pale self.

 

This week's blog is all about body issues both high and low when it comes to Crohn's disease.

 

Keeping a check on your weight is always key for a crohn's sufferer. During a bad flare up our weight can plummit but also during remission our weight can increase. Personally I have experienced my weight plummiting during a bad flare up and it's scary stuff how quickly it happens.

 

As I have talked about in previous blogs my worst flare up was during my GCSE's and I was set on a course of a 6 week medicated milkshake diet of a medication called Modulin. (It's fucking disgusting and use to make me heave!) This 6 week course ended up being 10 weeks and during this time I dropped nearly 2 dress sizes. Now a lot of people would think hey that's great a quick way to lose weight but actually it was not a very nice way of going about it. My mum in particular worried about me so much during this time because I just seemed to be losing more and more weight. It also resulted in me having to buy a new prom dress 4 day's before my prom because I'd lost so much weight that my original gorgeous dress just fell down.

 

 

New black prom dress for a new body with my wonderful friends

 

But weight can go the other way with crohn's disease and increase. When I came off my medicated milkshake diet I had to be so careful not to over indulge and not all of a sudden put the weight back on and possibly make myself ill again. Also, as many crohnies will have experienced a form of steriods is commonly prescribed to help control a flare up. However, a very common side effect is weight gain. During my course of steriods I did put on a small amount of weight (I was a lucky one!) but sadly the steriods didn't work to control my flare up. But there are many crohnies out there who have experienced the horrible side effects of steriods and how much it can damage your confidence.

 

As a crohnie our body shapes change so often and our confidence can be damaged. Luckily today I am in remission and my weight is at a good place and I try to keep up with eating good food, drinking lots of water and keeping fit through the gym and dance classes. However, there is one place which always makes me feel great about my body and confident with how I look...

 

Deadly is the Female, a girl's dream come true!

 

Deadly is the Female is a beautiful shop in the town of Frome which sells everything a girl could ask for; stunning dresses, pretty shoes, gorgeous handbags, the best swimsuits and so much more! It celebrates the female figure and offers clothing that actually fit the female shape, accentuating all the good parts (your boobs and bum will never of looked better!) but also hides away all those parts we do not discuss! I have never felt so confident and happy in my own skin and with my body shape than when I'm wearing something from Deadly is the Female.

I have also been lucky enough to of modelled for the website for this gorgeous shop and this has been a MASSIVE confidence boost. Through out my school life I always hated the fact that I had curves and wasn't a slim pretty girl and I would never of thought I could be a model but thanks to Deadly is the Female I now adore what my mumma gave me! Thanks to Deadly is the Female I now have to confidence to love my curves and make the most of them :)

 

Till next week when I will be able to tell you all about my MRI scan adventures.

Mwah x

 



The Invisible Disease!

The Invisible Disease!

 

Hello lovely people :)

Hope you are all well! Before I start this week's blog I would just like to say a little thank you to everyone who has read my blog posts so far. I really am overwhelmed by having nearly 500 views with only 4 blog's posted. So thank you all for support, interest and amazing comments, makes me feel good to know so many more people are becoming aware of crohn's disease so thank you :D

 

 

The latest news about my crohn's disease is that I have finally recieved my letter confirming that I will be having a small bowel MRI scan in a couple of week's time. This will be my third MRI scan so thankfully I've become quite use to it because trust me it can be VERY scary! But to anyone out there who is due to have an MRI scan my advise-take a music CD and make sure they play it for you! The MRI scanner is very loud so you are given headphones and you may not be told about it but you can take a CD so you can listen to music in the scanner and it really does make a difference as it's something that can relax you and take your mind away from what is happening. My personal choice of music: Mumford and Sons :D

 

This week's blog I'd like to talk about how crohn's is often referred to as the invisible disease.

Because of crohn's being an internal illness it's always going to be hard to make people aware of what it is you have and when you are suffering from it. A lot of people never actually knew that I had crohn's disease and had done since I was diagnosed when I was 15. For me personally if I'm suffering I don't wanna be moaning and groaning away about how bad I'm feeling and how ill I am, because I'd rather just get on with things and live my life. However, sometimes crohn's disease makes that very hard to do! That's why I believe that if you are able to make more people aware that you do have an illness and what it can be like during the bad times then that invisible disease can become visible. 

With crohn's disease, it's making people aware the extent of the pain you may be suffering with (I'm always carrying around a hot water bottle on my tummy when my crohn's is bad!), explaining that you may have to use the toilet more frequently (A lovely conversation, but necessary!), that you may be tired and a bit slow and that's not because you had a late night or hit the town and didn't get in till 4am but because your actually really down in the dumps and just ask kindly for support during a bad time.  

 

Awareness is so key for Crohn's disease!

 

No crohn's disease sufferer ever want's to be told:

"But you don't look ill"

"It can't be that painful!"

"You're so lucky you get to stay home and in bed all day"

 

 

The more we can educate people about what crohn's disease is and how it can effect people and how it can be treated the better it will be for crohn's disease sufferers :)

 

Next week I will be blogging about how these 4 little words can make me feel amazing on the outside when I'm not feeling so great on the inside!

Deadly.Is.The.Female.

 

Mwah x

 

 



The Other Half of Miss Moanie Crohnie!

The Other Half Of Miss Moanie Crohnie!

 

Well as I blog to you lovely people I am in process of having a Sehcat scan, a scan I have never heard of before! I first had to swallow a tablet which contained radioactive substances. That's right, I'M RADIOACTIVE BABY! (slightly!) This substance should become attached to the wall of my bowel making it easier to see on the scan. After 3 hours I had the scan in which you lie down in a tiny tunnel, it's a like a mini version of an MRI but a hell of a lot less scary! The scan only takes 5 minutes so I am in and out and gone! I then have to wait a week to be re-scanned to see how much of the substance is left which determines something but I got quite confused by all the techniqual jargen, so we shall wait and see :)

 

This week I want to talk about the other half of Miss Moanie Crohnie-the wonderful man in my life.
(WARNING:SOPPY PARAGRAPH!)

 

“Nothing in this world compares to the comfort and security of having someone just to hold your hand.”  

 

The first thing I ever properly talked about face to face to this amazing guy was about my crohn's. Admitedly we were both a bit drunk walking back from a party but we just talked and he listened as I explained what it was I had and how it made me feel and what the future may hold with hospital appointments, new medications and possibly surgery. He put his arm around me and everything just seem to fall in to place.

 

Now we have been together nearly 2 1/2 years and he has stuck by me through absolutely everything. He's been at nearly every hospital appointment with me, sitting holding my hand in the waiting room reassuring me that everything will be okay, he's looked after me when I've been at my worst tending to my every need, he's offered to learn how to inject my medication when I felt like I couldn't do it. He even managed to stay calm when I walked into the waiting room looking for a nurse after my MRI scan wearing a hospital gown partly covered in blood and with my arm dripping blood after having my canular removed! He has just been the most supportive, the most understanding and the most loving person I could ever imagine.

 

Thank you Shannon, I couldn't get through this every day without you x

 

He has also introduced me to something I never thought I would enjoy and love...

FARMING AND TRACTORS!

 

 

Yes my other half is a proper Somerset boy! He work's on a farm and drives tractors! He work's on a farm with a heard of Jersey cows and they produce the yummyiest milk and cream, it's even sold in Harrods! He has introduced me into this world and made me a farm girl and I LOVE IT! I've helped out with this TB testing, calfing, sillage all sorts and it's amazing but bloody hard work!

But, the best thing, the greatest thing! He let me drive his tractor.

No one is ever allowed to drive his tractor.

BUT I DID!

:D

 

 

Till next time my lovelies,

I wish you all happiness and health.

Mwah x