NON SUFFERERS NEED TO KNOW HOW MUCH THIS DISEASE CAN AFFECT PEOPLE!

Hey this is leanne writing here :)
I have just read my fellow blog inventors last post and I am close to tears reading it. Apart from the obvious reasons(i.e-that she is one of my closest friends,an amazing person and that I just plain love the girl,) I just understand what she is going through and has went through. Its not fair that a 19 year old girl has to cope with this sort of illness and its especially not fair if people walk away from her because of it,and I know there have been people that have done this to her,I mean theres been people that have done it to me as well over the years-the goings got too tough for them and they run-and its just plain wrong because at the end of the day we are young woman,we have personalities,interests,ambitions,feelings,senses of humour-we are not just two ill girls,our illness shouldnt shape our life as much as it does-it should be us that control all aspects of it not the illness or what people think the illness makes you like. I dont know about everybody with this disease but I can speak for me and lexi when I say that we have been denied jobs,studying,certain friendships,certain relationships and alot of fun because of this,sometimes due to the illness making us unreliable but sometimes its been because non sufferers just do not understand our health problems-I have had some people,who were ment to be friends, that have just stopped calling me when ive been ill because I cant come out and do things with them so therefore I am boring,or that have eventually argued with me because they thought I was exaggerating when I told them about how I was feeling-to them I had a stomach disease which meant I had a bit of tummy pain,some tiredness and occassionally needed medicine to help me,and this has upset me so much whenever it has happened because its so frustrating and it also is yet another reminder of the struggles I face whenever this illness decides to play up(which has been quite alot.) I hate that  I cant get a normal 9-5 job because employers say I am unreliable,I hate that studying and passing a whole course is so hard for me even tho i know im not stupid,I want to be someone,I want to have the chance to get to where I wanna be in life and I want to be known for what I accomplish-not be known as  the girl who doesnt keep well!! True alot of people have this illness and have relatively okay lives healthwise,but there is also so so many people that struggle each and every day to do the smallest things and I think this needs to be said more. Its not just a bit of stomach pain,its an incurable illness that (worst case scenario)people can actually die from,but this isnt said alot, Im not trying to scare people or go on about things like this but I just think that there isnt enough information available for not only sufferers but also non sufferers or family and friends of sufferers-and that isnt right! Having the right information made widely available could help people like me,lexi and alot of others I know-because then maybe friends,family,tutors and even potential employers would be able to understand things alot more,even be able to look past the illness and see us for the people we are and the potential we have!!
More and more people are being diagnosed with crohns,colitis and other bowel diseases like this nowadays, it needs to be known that theres not enough information or support for them! Hopefully we can play a small part in getting that message across.
I am sorry if this has been a boring read lol Its just that I find it hard enough struggling through my days with this illness as it progresses further and further without having to witness my good friend going through the same thing as I was a year or two ago healthwise and also to know that she is being made to feel a certain way because of the crohns and because of some peoples attitude towards it.
I have been going through test after test over the past few months because the doctors are worried that my disease is now progressing to other places in my body-places that they have never seen it before- if it continues like this then I have been told that I would be lucky to reach the age of thirty, Im 23 now.
I really hope that the campaign me and lexi are about to start will play even a small part in changing a few of the things I have mentioned above,thats all we can do at the moment-just hope.
Please pass on the link to this blog to as many people you know that could benefit from following us-or even people who are healthy friends and family members- help us change things :)
We are not always depressing by the way lol just had to say that, its just been a rough few months for the both of us and we are just dealing with it as best we can.
If you have any questions at all about us,what we've written,the campaign we'll be doing(how u can get involved) or even anything you need advice on then please send us a message through this :)!
Also check out our site www.abeautifulaffliction.webs.com
it is not fully finished yet but it shall be finished very very soon-with chatrooms,links etc....
Thanks for reading :)
Leanne xxxxxxxxx

In Hospital. Again. So much pain!

So sorry for the late blog, but i have been incredibly ill these past few weeks. I thought if I went on a liquid diet by myself I would be able to give my gut a rest. It didn't work. So the four weeks that I have been living on soup, and sookie sweeties. It was a waste of time. I'm in so much pain, discomfort, and vomiting all the time. So I am writing this from my hospital bed. I am on a low residue diet, lots of painkillers and am here until midweek at least. I want to get this sorted this year, because I haven't had a break from this disease in about 5 years, I wish I could be a different person sometimes, because then I might actually have friends that will stick around, and people who don't walk away from you because things are too much for them. Its hard being ill, it drains you physically and mentally, especially when you have your whole life on hold. I am away from my family and friends (the ones I have left anyway), and I cant ever be a real girlfriend, because what guy wants to be around a girl who is ill all the time, you can just ask my ex, he is the perfect example of a boyfriend bailing! Luckily the one I have now is lovely, and has a weird thing about liking hospitals! but I enjoy being his girlfriend because he really cares about me. Sorry I keep going off on tangents here! So in hospital, getting an Illeoscopy on Monday, which is a camera going into your stoma to check where the crohns is. Hopefully it will be sorted.This is a horrible disease, and people don't realise how hard it is to deal with. You have constant pains in your stomach, in your side, everywhere really. You never know when your next "flare up" will be, you are in constant fear of being somewhere you wont be able to get back form if you are ill. So many things can go wrong. It rips through your body, and attacks itself. You live day to day, minute to minute really. You can never be sure of how your morning is going to be let alone your week. But what you have to do is get into the mindset of being healthy, and you can manage throughout the day, i get tired so easily and constantly need a seat. I am out of breath and in pain most days. But I am fed up putting things off because I'm ill! I want to live the rest of my teenage life as a teenager and not be a grown up! I want my life to be sorted and to be healthy. Things don't necessarily happen like that but you can only wish right? I have put all my trust into my GI doctor, and that is a hard thing for me to do,, when i was first sent to a Dr who specialised in Bowel Disease, he said it was IBS and now, I am where I am now. I don't trust all Dr's they have to earn it. I'm just scared that if I lose control of my health and how I handle things, they will screw up and I will be the one left to pick up the pieces. I cant do that, not again. So this Dr earned my trust and I pray to god he knows how to fix me, but I need to be able to control my medicine, that's the only catch.But I think I am finished my rant now. I will Keep you all posted on what is happening.
lots of love
Alexa
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And one becomes two again :)!

Hey its leanne here-been out of action as lexi has said but I havent ended up in hospital just yet-first off just want to say to alexa well done for covering our new year weekend and basically our first post on your own :) knew you could handle it chick! You are a real inspiration to alot of people and im definatly one of them-your look on life and also on the admittedly rubbish hand you've been dealt healthwise gets me through alot of hard times :) Love you so much lexi-which you know obviously-and I am so so so glad we met eachother-my little bed sharing,hospital staying,doctor bashing tag team buddy :D LOL!!!!!
I'm well chuffed that we have followers already :) thankyou people for your time and comments! As Lexi said i've been really unwell for the past week-been having problems with my crohns-my crohns actually spread to my pancreas which is supposedly pretty rare so i guess in the worst possible way im special lol, its calmed down now but the damage its left behind is irreversible and pretty damn bad-basically if the crohns hits it again I will have to have the pancreas removed and then i'll become diabetic as well-woo hoo lol. I have to give myself daily injections of an anti sickness drug called cyclizine :( been having to do this for the past few months to control me being sick/feeling sick which totally sucks as you can imagine lol-i am not normally squeamish at all but having to stick needles in my thighs or bum is really pushing the 'squeamish factor' to the limit, but having to do these so often on my skinny little body means i have to keep using the same area's over and over again(-i mean i only have two thighs and one bum so its not like im spoiled for choice right lol?)means i've  ended up with some sort of infected abcess on my hip-abcess being the doctor word for it i would say its a bloody hole-and its possibly this superbug MRSA that has been in the news over and over again which is fantastic lol! So because i(like lexi) am so so stubborn and determined not to end up in hospital,especially only ten days in 2011,i am dressing this wound myself lol! thought i was being really clever but i am now sensing ive made a rubbish choice as its making me feel so so ill-high temperature,cant eat and im just sleeping way too much so tomorrow im off to the doctors yet again to try and get something done about it that hopefully doesnt involve me being admitted into hospital for tests because as much as i love the staff at the western general hospital it really is not the place where a 22 year old girl wants to be!! So keep your fingers crossed that I dont have to get dragged into hospital please :) because I want to try and get back into my studying at some point this year lol-I study English Creative writing and Dance(which are both passions of mine) and I am hoping to get into Criminal Psychology next year at uni so i kind of need to make up for lost time as u can imagine lol! Anyway I really have blabbed myself out I think lol,had a little bit of a rant and im now feeling a bit better :) I sometimes feel like im fighting a losing battle but i'd rather keep on fighting for a semi-normal life than give up and im sure lexi agree's with me on this otherwise we wouldnt be where we are or doing what we're doing here :)

Disasterous Week of Health

Hey guys, its Alexa. Leanne cant post anything for a while, she's going go to hospital tonight, to figure out what's going wrong. Both of us have been pretty ill this week Leanne has been throwing up all of this week, so nothing is helping even though she is on one of the strongest anti-sickness injections! so I will be writing on her behalf this week :). Scary thought, I know. so here goes the first blog I'm doing by myself......

Leanne and I were away on Hogmany down to the borders, for her mum's boyfriends house party. It was a nice get together, I met some lovely people and I of course got to be with my partner in crime to bring in the new year. Both of us have had a rough couple of years so it was nice to think positive for a change. However neither of us have got off to a good start. We spent the weekend down at Ians (leanne's, mums, boyfriend, tad confusing, try keep up) so the party ended at around 2, it was a renovated steading, so it was 5 or 6 houses all joined together, it was great! I met a fascinating woman there, her name was coleen, Leanne told me all about her, I would tell you all too, but thats not my place. I loved her, totally my style if im honest. Anyway, wee sidetrack there. So Leanne and I didnt get to sleep until about 5am so naturally we woke up at 9, mainly because leanne got up frst and woke me up! but I was like, a little bit awake, so wasnt overly bothered. We lazed about the whole day! luxury, eating crap that we'd bought, starting our blog, looking at ideas for websites ( which we are starting soon, hopefully going to have chat rooms, links to suppliers, healthcare advice etc, so be patient and pray for a techy to come help me!) we sat down and had steak pie (me without the pie part, doughy things dont mix well with me, the make me feel so sick and doest help my bag any what so ever) anyway so we had dinner, leannes mum tidied up, we retreated to the gorgeous comfortable bed! and then we went through later on at night to watch some Avatar!Leanne and I had already seen the film so Ian and Angie were asking all the questions, we both said it was amazing, and they loved it, so we were right =)! however leanne and i fell asleep so we decided to leave the last part of the movie until Sunday night. On Sunday we went to Berwick Upon Tweed but in England the shops shut at 4 on a Sunday! so we went to Morrisons got cookies and shortbread! then went to a pub, had drinks with a lovely couple who stay beside Ian, they had the cutest dog ever! they were so nice aswell! So back home had dinner watched avatar, went to bed. I felt like death though, my back was killing me and my stomach was in agony, also I found Crohns around my stoma, again, not fun, and pretty sore if I'm honest!. So on Monday Morning, we got everything packed before the adults were awake! shame on them =P, I got home around 5, I was so tired and felt so crap, i just wanted to go to sleep. So I had dinner with my mum, fell asleep on the couch for a while, went to bed and then arrived awake on Tuesday, my mum had gone to work so I had time to relax a little =). I was awake about 9, and basically the rest of the day. One of my closest friends Gemma came round and we chatted and caught up a bit, she was flat hunting for her and her boyfriend so she was all excited, they are the nicest couple in the world, I'm so happy for them. So Tuesday was pretty uneventful for me, the pain in my stomach was agony, so I was struggling a bit to do anything, I don't know what went wrong, I'm hoping its something i ate, but I think it might be a flare up, it really feels like one, I don't know what to do. I really want keep this year hospital free, and then go next year, so I shall refuse to go. End of. Leanne was pretty much the same I think, she is so ill right now, its scary to see someone you love go through that every day. I worry so much about that girl its horrible to think that could happen to anyone. I suppose its the same for my family and friends, they see me struggle everyday, some things in life are sucky but you deal with them and move on. That's what I do anyway. So yeh I stayed at my boyfriends on Wednesday and I felt so groggy, and my body was so sore, i just wanted to curl up and sleep forever. I got home on Thursday and my mum was over-hauling the whole house! she had our junk cupboard all pulled out and was getting rid of things like her life depended on it! so bad. So over the weekend everything has been done nearly, my room was today and tomorrow. She's off all week so its ridiculous, I cant wait to clean the whole house! She is only doing it because the Occupational health have sent round a guy to fit a stair life on Tuesday. Yes things are that bad, I hate going up and down the stairs it hurts way to much, I tend to cry walking up the stairs and spend like half an  hour lying/sitting at the top crying before I have to come down. Fun times. I think thats all I have to say this week. It feels so weird not writing this with Leanne. I will go see her this week and give her a big cuddle and ofc wine gums =)
Til Next Week.
xxxxxx alexa xxxxxx

Who We Are

Alexa- Well, I'm 19 years old and I come from Scotland. In the past 4 years i have been to hell and back and set up camp for a while. I suffer from Crohns disease, I have an illeostomy (stoma), I have had it since i was 17 and its been the hardest experience of my life trying to adjust to these sort of things. In the process I've had 5 operations and 4 of which were in 2010 However, i wanna show people/tell them that you can be beautiful and still make your life the way you want. On here is a place for people to follow our day to day trials or weekly if we happen to be ill. This is a chance for us to speak up and make people see that you dont have to feel like an outcast, or even hide away what you want to say because other people think its disgusting. You have a voice so use it. This is what I'm going to do, and then people can feel comfortable enough to ask questions and not hide away your true feelings. People will read this, people will scoff at this or even laugh, but we all know that we are good, loving and kind people, who are going to make a difference in this lifetime......
Leanne- Hey im 22 years old and like Alexa I have crohns disease-except ive had mine since i was a child-ten years old . Since my diagnosis I have went through operation after operation(with the first one resulting in me having to have an ileostomy made),been in and out of hospital and had to take countless amounts of different medicines to try and control my increasingly worsening condition-I used to feel so depressed and worthless all the time,I thought I was ugly and would never amount to anything because the stoma and the illness would always be there holding me back. But I was wrong. True the illness and stoma will always be there but I realised that it didnt have to stop me feeling good about the way I looked,achieving what I wanted to achieve and even little things like being able to wear the kinda clothes i wanted to wear! So basically I just want to share this message with anyone who is suffering from these kind of problems-you can be who you want-dont let an illness rule your life.