Friday, 23 August 2013

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

Saturday, 10 August 2013

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 :)

Thursday, 1 August 2013

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