Back to the hospital I go...

Back to the hospital I go...

Good day to you all :)

Hope you are all happy and healthy.

I wish I could say that I was...
Sadly I haven't gotten any better since my infusion, if anything I have gotten worse. I have been experiencing a lot of abdominal pain and nausea so I have been cuddling a couple of hot water bottles to help make me feel better. Due to it being my assessment time at University I decided that I couldn't be dealing with a flare up and assessments so I got straight on to the hospital. I was very impressed to have an appointment with my consultant 5 days later at 9am so I'd be the first patient seen, bloody amazing for the NHS!

My consultant was very helpful and has finally come out with what I believe a practical resolution. After my initial consultation which consisted of prodding my tummy which was ouchy, chatting through all my symptoms and seeing my last MRI pictures (that was so cool seeing my insides! And my boyfriend saw them, not a lot of boyfriends can say they have seen their girlfriends internal organs literally!) I was sent to have an X-ray to check there was no blockage in my bowel. Luckily there was no blockage but the X-ray did show that part of my bowel was largely inflamed.

So what's the solution? I am now going to be having a simpler version of a colonoscopy done so instead of viewing my whole bowel they will just look at the inflamed area and will take several biopsies. I may also be sent for another MRI scan to have a look at everything. 

BUT

They are now thinking that surgery will be the next option. In a weird way this is something I have wanted for a while. There are two options for my surgery, I will either have the infected part of the bowel removed or if it is just scar tissue that is causing the issue then the scar tissue will be removed. Both these procedures would be done through key hole surgery which is good. A lot of people find that surgery is successful for Crohn's disease as they may not have a flare up or any signs of the disease for years but others may experience it again within months it just depends on each individual. But if it could potentially help and for a long time I'd like to go for it.

So what do I do to make myself feel better?

I dress for me!

I may paint my nails, put on my favourite lipstick or a favourite outfit...

Or I might just snuggle into my Unicorn onesie!

I dress to make me feel good and better!

Big love to you all

x

The Return of Miss Moanie Crohnie!

Guess who's back? Miss Moanie Crohnie's back!

Hello my lovelies!

 

I am so sorry it's been so long since I've blogged! I have been so very very busy with just life; Uni work, Miss Pinup UK, work etc etc 

But I finally have my iPad set up so I am blogging to you directly from my latest infliximab infusion. 

So let's have a catch up...

Infusion selfie!

 

 Christmas Day was wonderful.

 Boxing Day was spent on the farm with my boyfriend.

New Year was a glam night partying into the New Year

 

 I have been featured in Vintage Life magazine talking all about the Miss Pinup UK competition

I had the incredible opportunity to perform at Sadlers Wells

 

 

Photo shoot with the incredible Terry Mendoza at www.retrophotostudio.co.uk

 

My latest photo shoot with the fabulous Deadly is the Female!

Photography by Kevin Mitchell, Hair by Lolita Noir and Make-up by Jenn Chambers

That's what I have been up to but more importantly how's my Crohn's disease?

The infusions seem to have done their job and I have been really well, up until now. Over the past couple of weeks sadly its been flaring up a bit with bad abdominal pain, frequent visits to the bathroom, blood where there shouldn't be blood and some other pleasant symptoms. This has all been kicking off as its that time of year at uni, assessment time. Naturally I am stressed and that just can't be helped so sadly it's making my tummy unhappy which is just making everything more stressful. Luckily though the hospital have been a great help and booked me in to have my infusion early to boost me up before my main assessments in the next couple of weeks. So fingers cross this does the trick!

3pm: Well I am plugged in and going! My veins didn't really want to co-operate today. My right arm has always been stubborn with canulars and blood test but my left arm has been so over used it could do with a break! My last blood test my right arm gave blood (woohoo!) but today it doesn't want to know and when it's a canular being prodded into your arm it hurts a lot more. Luckily my left arm is being good and the canular is in but still with a bit of pain. It makes things really awkward having a canular in your arm, I'm having to type this one handed! When the saline is put through its a really strange feeling as its all chilly going through me. The stuff they also flush through, the anti-allergy medication, really stings as it goes through and I can strangely taste it but it also makes me rather sleepy and dopey. But once I am plugged into the drip everything is fine and dandy and now I only have to be plugged in for an hour and a half so that's good. 

All has gone well and hopefully this will get me through my exams and then it'll be time to chill over the Easter break.

Today's infusion.

I will try my hardest to keep up with blogging but for now stay happy and healthy :)

Mwah x

I promise to tell the whole truth and nothing but the truth about my bowel!

I promise to tell the whole truth and nothing but the truth about my bowel!

 

Hello my dears :)

 

Hope you have been snuggled up inside on this horrible wet Sunday!

 

This week I had my third infusion and all seemed to go well. Except my blood pressure dropped again and then slowly came back to normal, it's something they are going to keep a close eye on. However, I remembered that AGES ago I had asked for you to send me any questions you had about Crohn's disease or living with the illness. I was rubbish and hadn't answered them!

But I have re-visited them and here goes, this will be honest...

 

This week's infusion entertainment was Glamour Magazine

 

What actually causes Crohn's Disease?

Nobody has a clue to be honest! There are many theories such as you can contract the illness through your genes, that it's an abnormality of the immune system, environmental and lifestyle factors can trigger it. Sadly, nobody has been able to pin point it which is a real pain, if we knew the cause we could find the treatment and stop other people from suffering from this horrible disease.

 

How do you find out if you have Crohn's Disease?

It's a loooooong process. For me personally I first visited my GP because I was bored of feeling sick and really tired all the time. I had a few blood tests and after some abnormalities showed up in my results they thought I may have Irritable Bowel Syndrome so I was then sent on to see the paedetrician (I was 15 at the time) at the local hospital. I then had further blood tests, stool samples, x-rays and an ultrasound. From all these tests the results didn't look good but being a child they don't really explain it very well to you! So I was then sent to see a specialist at the Bristol Children's Hospital where after many more blood tests, a endoscopy and colonoscopy I was diagnosed with having Crohn's disease. It's not the easiest of things to pick up on that's why you have to go through so many tests to finally find an answer.

 

Do you have to be really aware of what you eat? 

Everyone is different and have trigger foods which will result in a flare up. Some people have discovered that they are lactose intolerance or that they have a wheat allergy because it is what triggers off a flare up. Not being able to eat spicey food is really common within Crohn's disease as we all know what can happen the next morning if we have a spicey curry! (Eww!) I also find that really fatty foods will upset my crohn's, I use to have a chinese takeaway then feel hiddeous afterwards so I have had to stop that now. It's not difficult to stop having certain foods because we know what the result will be if we eat them so it's a real turn off!

 

Can you get any other illnesses or issues if you have Crohn's Disease?

Sadly yes. As much as Crohnie's don't like to admit it and talk about there are other illnesses and issues that can arise because of Crohn's Disease. This is quite commonly due to our crappy immune systems. We quite often have vitamin deficiencies for example when I was first diagnosed with Crohn's they found that my iron levels were very low so I was put straight on to daily iron tablets. We also easily suffer from infections and illnesses like flu and it can take a longer to get over them. Other common problems associate with Crohn's Disease are arthritis, skin problems, inflammation in the eyes or mouth, kidney stones, gallstones, or other diseases of the liver and biliary system. Some of these problems can be resolved during treatment for Crohn's disease but others have to be treated seperately. It's is something that Crohnies just have to accept.

I hope I have answere some of your questions and given you a good insight into Crohn's Disease. If you have any more questions, feelings or views on Crohn's disease please just facebook, tweet or email me :)

For now I await my next appointment with my consultant to decide on whether I should continue with my infusions.

It's a life long battle.

 

Until next time my lovelies :)

Mwah x

 

Miss Moanie Crohnie is Miss Pinup UK 2013!

Miss Moanie Crohnie is

Miss Pinup UK 2013!

 

Hello you lovely ones!

 

Soo sorry it's been so long but it's been an incredible few weeks!
I am officially Miss Pinup UK!

 

Ahhhhh how exciting! I am still in shock but still absolutely over the moon!

 

Miss Pinup UK 2013 Finals!

 

I entered the competition under my pinup name Miss Scarlett Luxe-Scarlett for my red hair and luxe as it's French for luxury! The Miss Pinup UK competition was held at the international London Tattoo convention in which there were 10 finalists. The Friday was the quarter finals, Saturday semi finals and Sunday the finals. The competition consisted of first having a question and answer session with the judges, we then had to perform a special talent in which I performed a couple of high energy dance routines one being a nautical themed jazz number and the other a seductive pointe work piece. We were finally brought onto the stage for a parade in which the results were given to us. It was an incredible and inspirational experience being able to work alongside many beautiful and very talented performers. This was the first year the competition has been held so I am absolutely over the moon to have won and I am still in shock. I am really chuffed to have won as well as I am a girl who has boobs, hips and a bum and I am a happy size 12 so I don't have the conventional model look but it's done me well in the world of Pinup. I am looking forward to the year ahead and I am excited for what it will bring me!

 

It has been an even greater achievement for myself suffering with Crohn's disease. I have recently had a rough time with my illness but I now having infliximab infused into me every 4 weeks seems to finally be kicking in and working. So to win this competition has given me a real boost in my confidence knowing that even though I will always have this illness I really can say sod it and achieve anything I put my mind too.

 

Miss Pinup UK, Miss Pinup International and all the finalists

 

I want to say thank you to EVERYONE who voted. You are super amazing and I appreciate all your support so much! If you would like to follow my adventures as Miss Pinup UK follow "Miss Scarlett Luxe" on facebook.

 

https://www.facebook.com/missscarlettluxe

 

Miss Scarlett Luxe

 

Next week will be my third infusion before my consultation to decide whether to continue with the infusions and how often or whether we should try something different. But I am feeling positive and I think the infusions may be the way forward :)

 

I promise to keep up with the blogging but thank you again for all your support.

 

Mwah xxx

 

 

 

 

 

Pain in the Arm!

Pain in the Arm!

 

Hello my lovelies :)

Hope you are all spiffing!

 

This week has been a mixed week, some major highs but also some lows including my second infusion!

 

Let's get the bad stuff out the way!

So this week I went for my second infusion and it all started off on a positive note as they were able to fit me in earlier so no hour wait this time! They took my first obs and all was well. I think I spoke to soon about everything going well! I then had a 45 minute wait of nothing as the pharamacy hadn't delivered my medication and they couldn't find my prescription. Eventually the nurse went on a hunt and all was sorted. When it came to putting the canular in I was really surprised to see where she put it in. Instead of putting it in the crease of my arm basically where my elbow is she put it underneath in my arm which was a right pain in the ass as I couldn't then bend my arm, this was a major issue when it came to needing to use the bathroom! It was also ridiculously painful! The nurse had to inject the anti-allergy drug and it has to be done slowly, I have never felt such a strange but horrible pain I really wanted to punch the nurse to stop!

 

Strange and painful place to put a canular!

 

I was eventually hooked up and all started off well until the nurses had a bit of a panic as my blood pressure suddenly dropped really low and I became very sleepy but they were able to get everything back to normal. So all went well and dripped on into me except I did have the occassional pain in my arm from the canular. Once all was done I felt very drowsy and doppy and I felt as though my brain couldn't really operate! I also felt as though I had a cold coming on, my nose was slightly blocked and my throat sore.

 

And as I type away to you I am tucked up in bed with a cold and a husky voice!

 

On a major positive note I have exciting news!!! :D

 

I have made it through to the Miss Pinup UK finals in London next weekend! 

Ahhhhhh :D

 

I am so unbelievably happy and excited!  

 

 

I will travel up to London Friday morning to compete in the quarter finals and I hope to go through to Saturday's semi finals and then Sunday's final! I am in this to win this! We have to first come on stage in our first outfit to talk to the judges, we then perform our special talent (I have a couple of dance routines I will be revealing!) and we finally come on in our second outfit for more questions before the results are given.

 

But...

I NEED YOUR HELP PLEASE!

 

Please vote Miss Scarlett Luxe!

 

In order to help me to get through the competition I need your amazing support so if you could kindly go to this page: http://pinupuk.com/girls/ and vote for me under my pinup name Miss Scarlett Luxe. You would be amazing and I would love you forever!

 

I'll let you all know how I get on-EEE I CAN'T WAIT!

 

Ta ta for now :)

Mwah x

 

 



A day on a drip

A day on a drip!

 

Here it is my first live blog at 2.32pm! Sadly due to lack of internet connection I can’t actually post this out straight away but I am typing away as I am plugged into the Remicade drip. It’s actually surprisingly easy to type with this thing in my arm.

Remicade Leaflet

 

I am currently about half way through the process and feeling pretty good just feeling a bit drossy. But weirdly I am excited also because I know finally that something is being done and fingers crossed I will be feeling better and get back to my normal self, YAY J

My appointment today should have been at 11am but due to a busy morning I had to wait an hour before anything could happen, so off Shannon and I popped for a cuppa tea. I returned at 12pm and after a little bit more waiting I was finally taken through to get settled in. I have a massive very comfy green chair to sit in, reclines and everything. The nurses here are all super lovely and are making me feel very comfortable and happy which is good because I am a bit scared because you never know what may happen. I first had my blood pressure, heart rate and temperature checked and thank goodness all is good. Once the drip began I then had these tests done again and again every half an hour to keep check. After a few yes no questions about how I’m feeling such as did I have a sore throat or a cough etc I was ready to rock and roll. The canular was put into my arm and normally I find them really painful but this one was actually alright. I had bloods taken to be sent off and checked and as per usual I bled everywhere again. I also had what seemed like lots of saline flushed through to keep everything clean. It was weird because I could feel it going through my arm, made it all cold. I was finally ready to hook up to the drip.

Canular in my arm

 

So I am now hooked up and going and all seems to be going well. YAY! I have about another hour on the drip to go and then I will have to wait 2 hours to check that I am okay and not having a bad reaction to the medication at all.

Hooked up to the drip

For now I will leave it there and then once I am all done, home and settled I will finish off and add photo’s too J
Speak soon!
x

HELLO!

So I am finally back home and snuggled up in bed as I am knackered! It's really weird I feel as though I have done nothing today and yet I am so tired. I have already have a half hour nap and an hour nap and can't wait for bed time! So I will keep this part short.

Once my drip had emptied (and the machine had beeped a lot at me!) they then washed through the drip with saline to keep it all clean. Whilst I was waiting for this to drain through I had a lovely chat to the gentleman next to me and his wife. He was in for a Endoscopy and after explaining what I was in for he couldn't get over how young I was and what I was having to go through. It was really touching as this complete stranger was being so caring and campassionate.

The drip nearly empty

After the drip had finished and the canular removed from my arm I had to sit about for a bit just to check I wasn't going to have a bad reaction or anything. I had a mini worry that they would keep me in longer as I had a bit of a temperature but I managed to persuade the nurses that all I wanted to do was go home.

It's been a really positive day and hopefully life will start to get back in order but for now I am glad to be home and snuggled in bed!

Till next time lovelies :)
Mwah
x

Up and Down and Round and Round!

Up and Down and Round and Round!

 

Hello All :)

 

Really sorry for a very late blog! It's been an extremly busy few week's which means my crohn's has been a bit up and down!

 

I have been doing all sorts from going to watch Paloma Faith, celebrating my amazing supportive boyfriend's 21st birthday to taking part in a increidble production of Singing in the Rain. During these busy spells I have to be super careful and conscious of things such as making sure I am eating properly and resting enough because it's so easy just to forget about looking after me (which sounds a bit selfish but it's so crucial!) and then I end up being really unwell, holting everything I do and love!

Something I have noticed in particular during this busy time is how my stomach size and appearance changes, it can be quite drastic. I can't explain very well why my stomach bloats up but I'll try! When my crohn's is active my stomach and bowel become over sensitive therefore as it tries to continue it's normal process it can't so bloats up almost to protect everything on the inside. It's quite common for the bloating to occur around afternoon/evening time which can be a right pain in the ass if you want to go out for the evening because your just all puffed up! This bloating can be very painful and can sometimes be so bad that I actually look pregnant! Which for being a 19 year old is bloody horrible!

This has taken a LOT of guts (no pun intended!) to post but the left image is my normal stomach and the right is how badly bloated my stomach can become. It look's like it could be a pregnant tummy!

I have particulary found that when I am stressed my crohn's is triggered off and I become badly bloated. For example I have been rehearsing daily for a production of Singing in the Rain whilst also planning and sorting out my boyfriends 21st surprise birthday party. I found that on the day of my boyfriend's birthday I worked myself up and stressed myself out more than I probably should of, worrying about hundreds of things when I should of relaxed and had a more positive mind. Then when it came to the party once I began to relax my stomach then started to play up. It got so bad when we went out to party the night away that my stomach bloated up to look pregnant and was so painful and uncomfortable that sadly I had to go home. It can be really disheartening as it seems like something that is so silly but it can ruin my every day plans not just for me but for other people, I feel as though I can't enjoy a normal life because there is always the risk that my crohn's will show it's ugly head. Also, as a young women it can really upset me as it can so drastically change my appearance sometimes so much that my clothes don't fit and I can't go out because I feel disgusting and that I just look horrible. On a more positive note I am learning methods that have helped the bloating to become less painful and less prominant such as breathing exercises to help calm myself and having soft foods such as soups and yoghurts so hopefully this will help in the future.

To end on a happy note here as some photo's of the exciting thing's I have been doing :)

My Birthday celebrations from my wonderful boyfriend :)

 

 Paloma Faith gig

 

My boyfriend's 21st birthday cake!

Singing in the Rain!

I have been given my date for my first infusion in a couple of weeks time so I shall be writing a live blog to let you all know how it goes.

Till next time my lovelies :)
Mwah x