Monday 19th May 2014

So today was World IBD Day and it was probably the best World IBD day that I have had so far.

I decided this morning that I was going to ask my favourite non IBD suffer's to retweet this picture.

So some of my favourite paranormal investigator's (yes I believe in ghosts), British Touring Car driver's, youtuber's and musicians posted the picture on their feed and so many of there followers retweeted it. I decided to send a thank you tweet to every person that retweeted the picture, I know a lot of people will think I am stupid but I was just so grateful.

Honestly words can not describe how happy I was that they retweet this picture it finally feels that people are starting to become more aware about these terrible illnesses, I was also able to chat to some new IBD warrior's and to people who have family members and friends with IBD.

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Monday 7th April 2014

Words cannot describe how frustrated I am with my health at the moment. I can't remember if I wrote about this but over 5 weeks ago I surgery to try and fix the open surgical wound that I have had for 5 and a 1/2 years, everything was going great but now there is a hole and there is stuff coming draining out of it. I was really hoping that this time it would be fixed so that I didn't have to daily dressings anymore but that is not the case.  I shouldn't really be that surprised though because how is a wound suppose to heal if the body is not getting enough nutrition.

So yesterday I started clearing out my bedroom because the new bedroom furniture should be here in the next 4 to 5 weeks. There might be one slight issue with the new furniture and that is the wardrobe space, I am going from 2 double wardrobes to one. When I was ordering the furniture I thought to myself I don't need 2 double wardrobes because I don't wear half the clothes that I have but when I was clearing one of the wardrobes I was unable to part with most of the clothes.

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Monday 31st March 2014

I haven't written an entry for a few because I was really tired after my day out on Friday and also since Saturday my grumpy guts have been playing up something rotten.

So on Friday I went on the hunt for an old fashioned cream bookcase to match my new bedroom furniture, I looked round a few different shops but I was unable to find one that was suitable. :-( I may have not been able to find a bookcase but I did find a really comfy office chair that wasn't too expensive.

So because I was out for most of the day on Friday my body decided that it want to punish me for going out. For the past 3 days I have had a high temperature, this feeling that my stomach is going to explode, stomach and back pain. Despite all the problems I don't regret going out for the day, I refuse to let my illness control me. If I let the Crohn's and stricture's rule my life I wouldn't have a life

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Wednesday 26th March 2014

Today was oesophageal dilation day. So I got up at 6am packed my overnight bag did all the normal things i.e have a shower, wash my hair and headed off to the hospital.

15 minutes after arriving at the hospital the nurse came and asked why I was there because they weren't due to get any new patients today. I told her that I was there to get an oesophageal dilation and I showed her the appointment letter that I got in the mail, so she took the letter and went to phone my consultants secretary. A few minutes later she came back and told me that the dilation had been cancelled and rescheduled for the 9th April. Normally I would get angry at not being told that it had been postponed but it has happened so many times now that I just don't see the point at getting angry anymore and to be honest I wasn't that surprised that it been cancelled because my gut feeling for the past few days had been that it wasn't going to get done.

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If you would like to know why there wasn't any diary entries for 2 months then click on this link: http://crohnsquine.blogspot.co.uk/2014/03/where-have-i-been.html

Sunday 23rd March 2014

I have been extremely tired recently and all I do is sleep. I sleep all night, then I am awake for a few hours in the morning, then I go back to sleep, wake in the evening, stay awake for a few hours and then go back to sleep. (I have no idea if that sentence makes any sense) I am finding it so ridiculously hard  to get anything done at the moment because by the time I get ready to go out somewhere I am exhausted and need to go to sleep.

This coming Wednesday (March 26th) I am getting another oesophageal dilation done so I am really hoping that once I get some proper food into me my energy levels will go up. It's weird how I gone from to complaining about not being able sleep to complaining about sleeping to much but I suppose this is what happens when you have IBD.

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If you would like to know why there hasn't been any diary entries for 2 months then click on this link: http://crohnsquine.blogspot.co.uk/2014/03/where-have-i-been.html

Sunday 26th Janaury 2014

This weekend hasn't been too bad thankfully, I did have a couple of HSP looking spots appear on my legs so that explains why I have the joint pain.

I have finally found a horse riding school that I like so I have spent a good portion of my weekend looking at horse riding gear. The only I am not sure about is do I just book a lesson now or wait until the spring? I cannot wait to get back in the saddle though, it has been such a long time since I last went riding but this is the first step in the attempt to get my life back on track.

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Friday 24th January 2014

So I haven't written for a while as I have been struggling again. At the moment I have really lost my way and I am struggling to find my way back, I know that all these feelings are due to the lack of proper nutrition well that's what the doctor's say is causing it.

It is very funny how not eating affects the brain so much, at the moment I am unable to concentrate for longer then 5 minutes, I can barely string a sentence together when I write and my mood is constantly low. I always wonder if anybody else feels like this when they haven't had proper food for a few weeks.

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Thursday 16th January 2013

I am unable to eat any solid food again, I was really hoping that the lining of my oesophagus had just become irritated and swollen shut but that is not the case by the looks of it. At first I was upset that this had happened but now I am just plain angry, I don't understand why it has narrowed so bad because I haven't done anything different. 

So the lady from Bupa phoned today to arrange the delivery of the humria injections and sharps bin. Delivery has been arranged for Monday which is just in time for my next dose of humria on Thursday. 

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Monday 13th January 2014

These last few days have been pretty rough. :-( To start with I develop a obstruction on Friday night and wasn't able to pass it until Sunday night, the offender that caused this obstruction was a bit of green pepper and yes I probably shouldn't have eaten something that had peppers in it but I love peppers and I really miss eating them.

Yesterday my oesophgeal stricture's became a big issue again, I tried to eat but food wouldn't go past the stricture and I had to bring it back up. I am extremely disheartened by this because it is only 3 and a half weeks since my dilation and they shouldn't be this narrow already.

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Friday 10th January 2014

So everything is going good regarding the humria, there hasn't been any nasty side effects like the previous Crohn's medication thank goodness. The one and only side effect that I have noticed is it has made me very tired, the first night after I had the injections I slept for 19 hours.  Last night I slept for 16 hours so I am gradually sleeping less and less, a lot of people are not normally happy with feeling really tired but as someone who suffers from insomnia I think it's great because I can finally get some decent nights sleep.

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Tuesday 7th January 2014

So I had absolutely no reason to worry about these hurmia injections because they were super duper easy to do. The IBD nurse asked if I wanted her to do the first injection but I thought I should just take the bull by the horns and do it myself because normally the more I think about things the more stressed out I get.

The injection was pretty simple all you had to do was check the expiry date, make sure there was a bubble, take the caps off and then inject. A good thing about using the humria pens is you don't see the needle (I will do a more in depth post on my humria experience on my other blog).

At the moment I haven't noticed any side effects which is amazing because when I have taken Crohn's medication in the past I always start suffering with sickness and stomach issues but it really doesn't look like that this is going to happen this time.

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Monday 6th Janaury 2014

Tomorrow is humria injection day. I am so glad that it is here but I am also really nervous about it as it will be the first time that I have injected myself. Nowadays everybody does there own humria or methotrexate injections but back in the day when I had methotrexate it was given to me by a hospital ward nurse, oh how times have changed in such a short period of time.

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Saturday 4th January 2014

So I have gone from not being able to sleep to sleeping all the time, I have given up on trying to understand how my body works. I have also started to have fever's which I really hope is Crohn's related because I don't want to have to delay the start of my humria treatment.

So today I got an early birthday present in the mail and I couldn't make up my weather I should open it or not because my birthday isn't until the 3rd of February, but the temptation was too much and I had to open it. So in my package was 2 pair of pj's and a hoodie from David and Goliath.

These are amazing birthday present's, I am such a lucky person.

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Thursday 2nd January 2014

Only 5 more days until I start hurmia and it can't come soon enough because I am so sick of feeling rubbish every single day. I would be lying if I didn't say I was really nervous or maybe scared is a better word to use as all previous medication failed to touch my Crohn's. I am so scared that the same thing is going to happen with humria and then I am going to be left with no other medication option. Yes there is a new drug coming out called Vedolizumab but from what I have read about it, it is effective at treating Colitis but not so effective at treating with Crohn's.

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Wednesday 1st January 2014

Well my New Year has been very quiet one as I don't get the of the whole New Year thing, honestly I  think is one of the most overrated holiday's. Everybody is like New Year, new start but it has never been like that for me I go to bed sick on new year's eve and wake up sick on New Year's day, also I have a lot of upcoming hospital treatment this year which I am not exactly looking forward too.

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Wednesday 27th November 2013

So this next week and a bit is going to be a busy one as I have decided to try and post a blog post everyday on my other blog for Crohn's and Colitis awareness week. I am really hoping that I will able to post something everyday but my problem with putting letters the wrong way round and writing sentences that make no sense could be an issue.

I really must make a start to my Christmas shopping as well, I know what I am getting everybody so it shouldn't be to difficult this year. Another thing that I have to do is sort out my donation to the Cat's Protection League, I am planning on giving them money, food, treats and maybe some toys.

I really hope my health stops deteriorating though because I really want to get these things done.

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Saturday 23rd November 2013

Finally today was the day that the World got to see the Doctor Who 50th anniversary episode, (yes I am geek) it was amazing and it was so cool to see Tom Baker in it. Seeing as I am not doing anything tomorrow and there isn't going to be anything interesting on tv I think I will end up watching it again on the bbc iplayer a few times.

So my health has been getting more and more crappy by the day, first it started off with pain in my stomach but now my joints hurt, especially my hands. If things keep going the way they are might have to cave in and get the evil tablets aka prednisolone (steroids).

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Tuesday 19th November 2013

So today we had our first snowfall of the winter, it wasn't that much but I love snow so it made my mood a bit brighter. As per normal everybody of course start's to moan about the snow but really there wasn't anything for them to moan about it was just a light covering.

Last night I decided to try and read books again. Ever since I was prescribed citalopram 2 years ago my head has had this fuzzy feeling and I haven't been able to concentrate on things but since I weaned myself off them I have noticed that my concentration is improving so why not try to read again. Before I started taking the citalopram I did a lot of reading because it was a way to forget about all the crap I was dealing with in my life, I can honestly not wait until my concentration returns fully and I am able to escape into books.

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Monday 18th November 2013

So my sleeping pattern is all messed up again after Friday. I had to get up early on Friday because I had the hospital appointment and late in the afternoon I decided to have a nap because I was so tired but of course it was a stupid idea because I slept from 4 to 9pm and that meant I was able unable to get to sleep at night.

Also after being at the hospital I have been so stressed about what is going to happen with this fistula. I have been trying to keep myself busy but as soon as I stop doing things I start stressing and worrying about it again, why can't I just switch my brain off.

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Friday 15th November 2013

So today I saw my colorectal (bowel) surgeon and it went pretty much as expect. At the beginning of next year she is going to take me in as a day case to clean up the wound and take away the over granulation tissue, also when I am in she is going to try and find the fistula that showed up on the MRI scan.

Today when I was at my appointment I also mentioned that I didn't want anymore oesophageal dilation's but I was told that it was not a good idea to stop doing them. So when I got home this afternoon I phoned my GI consultant's secretary to get another oesophageal dilation arranged, fingers crossed that I will get it done before Christmas.

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