Monday 24 February 2014

100 Days After Surgery.

100 days later, I feel like i am starting to live a regular life again.

Today, i got back into perfecting at school. I took a perspective teacher round on a tour of the school. Doesn't sound like much, but i used to do that weekly and i hadn't done one for months before today. It felt good to be entrusted with responsibilities again.

I also had a job interview. It was so nice being able to relax during the interview without the anxiety of whether or not i'd need to run off to the toilet mid-conversation. I think it went well, but im just happy that im being productive and trying to get back out there.

I want to try and start playing football and hockey again too; i miss sport SO much now. It will be hard at first, but i want to try.

I never pictured being this far into my recovery stage by late February. I am so proud of where i am and it is heavily due to the support i have received. The support makes me want to get better and push myself to recover. I know i say this a lot, but thank you again.

I'm now going to celebrate by treating myself to a nice bath!


Sunday 23 February 2014

A small thank you

To those that messaged me and responded to the anon. Its always nice to be reminded how big an army of support you all provide me. You're wonderful people and i am truly in your debt x

"I hope that IBD kills you you piece of sh*t"

A fairly forward comment, do we not think viewers? Unfortunately, i have to let this anon down and tell him that nothing is going to get me down and certainly IBD will not kill me. I intend to live a long, happy life and die when my time is up.

What this person failed to do before posting such a post, was read the rest of my blog! The surgery i had removed my IBD in my colon. I have a tiny bit left in my rectum which will be removed within a year anyway so, really, he/she needed to do their homework. My beautiful surgery left me IBD FREE and free to live a long, healthy, prosperous life!

I am stronger than i have ever been and, yes, i do have more operations to come and, yes, they'll slow me down a bit. But all they'll do is make me even stronger and continue to give me a healthy, limitless life!

I am not going to let an ignorant, possibly sad and alone 'anon' effect my recovery.  I am so happy with what i have achieved in the last 3 months. Tomorrow, it will be exactly 100 days after my operation. This time 99 days ago the anon may have been close to being right. I was feeling like death. But, because of the strength i have thanks to lots of love and support, as well as my own perseverance, im up, im running, im working, im living.

For anyone that has ever received such hateful mail, ignore it. They only send it because their life is worse than yours and envy you for what you have and what you can do. Im proud to be part of the IBD and Ileostomy family, and nothing you or anyone else could ever say will make me feel otherwise.

Good day.


Disgraceful behaviour from an anonymous viewer.

"Anonymous23 February 2014 17:24
You really need to go die... I hope that IBD kills you you stupid piece of shit"

I don't know who wrote this. But in future, please restrain from writing such foul things on my blog. This is a help site for those that want it. If you don't want it, don't read my blog. I really hope i never have to hear from you again and i hope you learn, quite quickly, that you just can't speak to people like that. You're a nasty peace of work. 

And FYI, my IBD has been removed thanks to my operation; if you had been paying attention.

Saturday 22 February 2014

Nearly hit 50,000 Views

As you've all been so incredibly supportive and wonderful for continually reading my blog, i would like to return the favour. So give me ideas for what i should do once i hit 50,000. It can be a type of post, a form of charity/fundraising, question and answer session, anything within reason and for a good cause-remember, this is a blog to help those with IBD so lets try and keep it relevant hahaha!

Again, thank you

Thursday 20 February 2014

Lazy Day no. 18097492810

I have been having so many lazy days in bed recently. Its so nice to just relax and stay in my robe all day; eat junk food; play playstation; nap you know how lazy days work.
Spending so much time off my feet may not be the best thing to do in terms of my recovery, but it is helping the bad pains that i've been experience around my ileostomy and scar for the last week or so. I think the pain was due to a cycle and a few walks i'd done-perhaps too much too soon.

I am dying to get back to exercise and sport, but my body is still very weak. All of my stomach muscles have been asleep for months now so any form of physical activity causes me quite a lot of pain. Nevertheless, i will persevere. However, as for today, i thoroughly enjoyed my day of rest.

Wednesday 19 February 2014

Another god damn colonoscopy

Forgive me if my thought process was rather naive, but i figured once i had my colon remove i wouldn't have anymore COLONoscopys. However, there are such things as flexible sigmoidoscopys, of which i had a few last year, and on the 3rd March i will be having another one so my Doc can see whats going in inside my rectum.

I hate these things. I have a huge phobia of anything going 'in' me now from all the bloody medications fingers cameras etc that have been up there, and i figured once i had my surgery that that would be the end of them! but, clearly, i was wrong. I've had suppositories up there, enemas and now another camera.

Its so uncomfortable i hate it. No sedation no anything; just you lying on a bed in a gown whilst a camera is put deep inside you and moved about by the doc to see whats wrong. It makes me feel physically sick and theres a tv right in front of me which shows what the camera can see. LIKE IM GONNA LOOK?! who wants to see that ffs.

Im really not looking forward to having another one of these. they're fucking awful.

Monday 17 February 2014

The Dilemma I am Currently Facing. Advice from surgeons needed.

I don't know what to do about these future operations. They come in two stages with a final third adapting stage.

  1. Create the pouch in the area where the rectum was but create another ileostomy in the same place as the current one and use that ileostomy until the pouch is fully healed.
  2. After (as doctors say) 3 to six months, bring the ileostomy back in, configure the small intestine back inside me properly and get the pouch up and running. 
  3. Learning to use the pouch can take months. It is basically the same as having the bag i have outside my tummy at the moment, only its inside me. It fills up, then i go to the toilet, sit down and empty it. Only with the pouch, i obviously won't be able to see it, so accidents can and probably WILL happen. It is a difficult thing to manage but in time it becomes 'easy'.
So, in total, these stages accumulate to around 10-12 months. Because of this, the original plan was to finish IB next year after repeating upper sixth (so graduate may 2015), then start the ops and finish and go to uni in october 2016. However, do i really want to push uni back ANOTHER year? Releasing i would 1 year behind was one thing, but 2 is very difficult.

So i have had a new idea. I dont know if it'll work/if my surgeons will approve it, but here it is.
  • Finish IB in may 2015. 
  • Have the first operation as soon as i finish, so late may/early june. 
  • Recover from that surgery in 2-4 months; similar to how I've recovered from my recent operation.
  • Go to university there and then (October 2015) and postpone the next operation until i finish my first year of uni, so may 2016. 
  • The second op is very small-it is the adapting process that takes time. But if i have it in may/june, i will have 3 months or so to learn over the summer of 2015 and then return to my second year of uni HOPEFULLY with a relatively normal life.
To me, this all sounds good. I just don't know if im allowed to increase the gap between the two ops from 3-6 months to nearly a year. I need to find out asap.

Sunday 16 February 2014

I. Miss. Popcorn.

Since my op there are certain things im not allowed to eat and drink. Most of them im not too fussed about-nuts, certain vegetables etc. However, the one thing thats KILLING me, and the one thing im CRAVING more than anything else, is popcorn.

I used to have popcorn at least twice a week. I would go to the cinema just to have popcorn. Now im not allowed it because the seeds and just popcorn can block my stoma and cause serious issues. It sucks

Yesterday i was at the cinema and the smell of freshly made popcorn was driving me crazy. Someone feed me popcorn when im asleep so its not my fault and i dont know about it but my cravings are satisfied yay

Thursday 13 February 2014

UPDATE FROM SURGICAL TEAM; 13/02/2014

I wanted to post this information as a video because of the amount of information i received today-however, google is being an arse and is taking forever. SO, here we go.

For whatever reason, my parents and i both understood, from what we were told in hospital previously, that if my rectum was inflamed then i would not be able to have the operations to remove my bag and id be stuck like this for life. Hence why i've been so worried and annoyed about my still diseased bleeding rectum. However, as we discovered today, the state of my rectum means nothing whatsoever, because in order to do the next operation, they remove the rectum anyway! Healthy diseased whatever, it goes!

So, the next operation would be me having what is known as a 'pouch'. My rectum is removed and the surgeons loop and fold my small intestine round to create a 'make-shift' rectum in place of my old one. This is known as the pouch. It stores the waste like a regular rectum and large bowel would and then when its full it is emptied. To empty, i would simply sit on the toilet and let it out of my back passage like anyone else-with a few major differences haha. The pouch will basically act in the same way my external bag does at the moment. It'll fill up with pastey/liquid waist then need 'emptying' (me to go to the toilet) when its full. Right now though, i can see when my bag is full so i know when to empty it. With the pouch, i won't know. So it'll take time to adapt to it. Yes, there will be a few months at the beginning where i have accidents and stuff, but hopefully ill get used to it.

There is a chance that the pouch just won't work or cause me serious issues. if this happens, it'll be taken out and ill go back to living with a bag.

That is the short version of what i was told. The whole process will take around a year. I'm going to start the process in May 2015 and hopefully finish spring time of 2016. Meaning i will go to university two years late now.

This post is getting long so ill write about how i actually feel about all of this later. This post was purely for the facts. Thanks for reading xx

The day of the big appointment.

Fair to say im bricking it.

Tuesday 11 February 2014

Parent's Evening!

Tonight, i had parents evening-an event that i thought was going to be a complete waste of time for both myself and my teachers and we'd have nothing to talk about! However, it was actually very useful in terms of planning for next year and advice on how to handle re-doing upper sixth. I have been advised to sit the lower sixth mocks in april just to get back into the swing of doing exams and seeing how much of year 12 i actually remember!

It was a very positive and informative evening !

Monday 10 February 2014

Video post about the 'big' appointment

A video update about my current status and upcoming appointment with my surgeons on thursday:




Sunday 9 February 2014

The reason behind my lack of posts

Hey guys,

I know i haven't been blogging as much as i usually do the past couple of weeks, and this is simply down to me trying to be a normal teenager and go out and so fun things! I've had a great two weeks or so in terms of socialising, going to school, shopping cleaning my car etc, just regular activities that i haven't been doing for the last few months.

Its nice to prove to myself that i can do normal things and that im not massively limited anymore.

I only make this smile when im happy, so dont laugh


Thursday 6 February 2014

Back to DJing!

Pre-surgery, when my colitis was taking over slightly, DJing was fairly impossible. Working alone at a desk where you aren't able to leave for 4/5 hours is a nightmare when every 30 minutes the urge to go to the toilet would hit. It stopped me from doing it for a long long time.

But now my new bag system puts me in control, i have two gigs lined up already and am feeling much more confident about getting through the nights without any issues!

If you know of anyone that needs a DJ or even need one yourself, im happy to do it! I'm very happy and excited by the fact that i can do it again!

Monday 3 February 2014

My best day at school this year!

Today was great! I went to four lessons and contributed in each one and really enjoyed myself! I have decided to go to as many lessons as i can now-still only 3-4 a day, but try and go to at least two lessons of each subject per week. My brain is still dormant so in terms of work, im not doing very much at all. But that doesn't mean i can't go along and listen and just enjoy being in a regular lesson again right?! Lunch also went well and yeah nothing bad happened at all today.

Really great pick me up day :)

Sunday 2 February 2014

Something bad happened today.

I went shopping earlier with the vouchers i received for my birthday.
I went to Next to find a shirt or a t-shirt. I've always been the type of person to try a tshirt on over my original tshirt in a shop so i dont have to waste time in the changing rooms. I found a bit of the shop where no one was and put it on. I liked it. I took it off to go and pay and as i did my other t-shirt rose up a bit. As this happened, a kid walked round with his mum and he saw me with my shirt risen up and screamed and cried. His mum told me to get away from him and that i was disgusting. All he could see was the bag not even anything in it. But still, that happened. I didn't buy the tshirt, i just left.

Was she rude or am i truly that disgusting now

An interesting thought

A fellow IBD blogger of mine just asked me; "what do you wish you were told when first diagnosed with UC?". At first, i wasn't sure how to answer. But then the answer became obvious. I wish that i was told surgery was a real option. Sure, my doctor mentioned the word surgery, but he said its so uncommon that he's sure medication will fix it and i wouldn't need surgery.

Thats the whole reason as to why im writing my book; doctors need to learn to be more up front about the good, the bad AND the ugly! Don't tell us what you think we want to hear. Tell us what we need to know! If i knew surgery was a pretty realistic option, i wouldn't have been so distraught. when i found it that it was happening a week later.

Naturally, the doctor could not predict that medications wouldn't work, i accept that. But don't tell me i won't need surgery. Thats not cool.