Friday 18 April 2014

An explanation as to why I'm not blogging at the moment (besides now).

This is a long one chaps.

After a long chat with my incredible psychiatrist, Dr R, we've decided where the route to a lot of my emotional difficulties lie: I'm seen by many, including myself, as an 'ill' person.

At school, I have considerations, for example, that magnify it every day. Year 13 go on study leave in a couple of weeks, and school want me to drop into year 12 for the last few months. I have respectfully said no to this and explained all of my reasons why. I feel that it would be far better for me to spend time away from the place that makes me feel very insecure and different for a while until I am more confident in my current state. I will instead, spend time with the general public, working at the garden centre etc, where no-one has to know a thing about my medical situation and I act and am treated like any other employee. My bosses know, yes, but the hundreds of people that walk past me day by day do not, and it is liberating. It also allows me to build my strength up again and get myself fit in time for my next operation.

In terms of blogging, well, the way i see it is this: before my operation, when i wasn't considered ill (even though technically i was far more ill but thats by the by), i didn't blog about my medical life each day/week. A healthy person doesn't sit down and talk about the cold that they are developing blablabla. So, to minimise my situation to myself, i am not going to blog about it much either. When there is genuinely big news, or a big concern of mine, i will because it can help. But, when i have little things on my mind or petty issues, i won't blog about them. I have wonderful people i can just talk to instead. This is, again, to make me feel more like a regular 'un-sick' person who hasn't had any operations etc.

When I'm out sometimes, i honestly forget that i have the bags on. And i want to try and feel that more and more. When im distracted and doing things un-bag related, i forget. And forgetting, for the time being, helps me.

So, i shall be blogging less but still feel free to talk with me if you'd like. I am happy to talk about things if people ask, but unless something is really important, i won't be casually blogging about it.

I think it is what is best for me in my stage of emotional recuperation at this moment.

I'll be back, though, don't you worry!

Thursday 10 April 2014

A recurring problem I have with doctors, surgeons and nurses.

It seems to me that medical school fails to teach medics the basic 'duty of care/emotional support' part of the course. Many times when i was in hospital for my surgery did i feel like nurses and doctors said things that were just not appropriate for a patients ears. For example, when i was throwing up lots, dont let me hear you say "oh thats really not good that shouldn't be happening". Surely you don't want to worry the patient even more.

Anyway, today, this issue arose again. I was having a surgical check up at Epsom Hospital and was expecting it to be with my usual surgeon, but it wasn't. It was with one of his team members, which i was okay with i didn't mind. As per usual, there were others in the room listening in on our appointment and my case-trainee nurses etc. Two things happened/were said that annoyed me/made me feel a bit aggravated.

Firstly, the surgeon asked me how the stoma was and i said it was fine not causing any physical issues. His response; "good, it isn't really that big a deal, is it?" I smiled and said no, but inside, i was thinking-you can only say that once you've had it, sir. How can he say that?! He has no idea how 'big a deal' it is! You can't possibly know what its like unless you have it. I dont care how many people you've seen with it or treated with it. If you dont have it, you can't know what its like. So dont try and tell me it isn't a big deal.

Secondly, as the more avid readers of you may recall, i had a colonoscopy about a month ago to check on how my rectum was doing. As expected, it showed colitis; redness ulcers scarring etc. That was fine i obviously knew it would show that. Today, however, the surgeon said, "oh you had some biopsies taken did you?" I explained they were from the colonoscopy and that they should Colitis. He then got the pictures up that were taken of my rectum and said "oh lord yes that is very red, very bad colitis. Come and have a look at this" and showed the two nurses, who then looked at me with the look i hate most, pity. I mean, i know its colitis thats clear and i know its not exactly 'good'. But, don't seem shocked that its bad and show others who then look at me like that. Just don't say anything if its bad it doesn't matter i already know it is!

I don't know, i just feel that medical staff could learn a thing or two about what to say and what not to say in front of patients, thats all.

Wednesday 9 April 2014

Calling all readers

If anyone fancies listening to me rant/talk about stuff, let me know.

Tuesday 8 April 2014

Need a new motive!

I'm getting bored and want something new to do. I like new things; i always get excited and childish about them. Even just a new game or something, anything!


Saturday 5 April 2014

Bye Bye UCAS

Yesterday, i declined all of my university offers officially on UCAS. It wasn't easy and it took a bit of encouragement from a good mate of mine. He told me to not think deep into it-i just declined them, thats all there was to it.

But, of course, i did think a bit more into it. I mean, who has ever declined an oxford interview and offers from durham Edinburgh St. andrews and warwick?! It sucked im not gonna lie like it made it all seem much more real. Now there is officially 0 chance of me going to Uni next year. I knew that anyway, kinda, but now its set in stone and its not a nice thing to have on my mind.

Tuesday 1 April 2014

Excited for tomorrow's talk!

Tomorrow afternoon, i am off to Royal Russel school for my third raising awareness talk about Ulcerative Colitis and the Crohn's and Colitis UK charity. The last two went so well so i really hope tomorrow's does!

At Harris, i only had 10-15 minutes. Tomorrow, i get around 30! So im gonna have to add some content to my talk hahaha but as it all comes from the heart and isn't in any way rehearsed, it should go swimmingly.

Cannot wait!

Monday 31 March 2014

Another great show of support

I just want to thank everyone who got involved with the #getyourbellyout campaign yesterday! It was lovely to see so many take an interest.

From my knowledge, quite a lot of money was raised last night but that doesn't mean you can't keep donating! The more money we donate, the more research can go into preventing people needing surgery.

Lets make a difference.

Sunday 30 March 2014

Get YOUR belly out!!




TEXT CCUK14 £3 TO 70077 TO DONATE TO CROHN'S AND COLITIS UK. GET INVOLVED! #GETYOURBELLYOUT

Time to Make a Difference- #GetYourBellyOut

Right guys,

We all saw the effect that #nomakeupselfie had last week. Tonight, it is time to raise awareness for Crohns and Colitis. Tweet a picture of your tummy and hashtag #getyourbellyout and write a line about why you want to raise awareness. I will tweet mine very soon and if lots of you could either do it or retweet it so others know about it it would mean a great deal.

I'd really like this to kick off, so lets make it happen!


Friday 21 March 2014

Interview by Victoria Marie about "Colitis Awareness GO"

One of my IBD family recently asked if she could interview me for a blog post she wanted to write about my new project, Colitis Awareness GO. She has  written it all up and it is live now! Do take a look at it and the rest of her blog, its wonderful.

http://colitisandme.blogspot.co.uk/2014/03/making-difference.html

http://colitisandme.blogspot.co.uk/2014/03/making-difference.html

http://colitisandme.blogspot.co.uk/2014/03/making-difference.html

http://colitisandme.blogspot.co.uk/2014/03/making-difference.html

http://colitisandme.blogspot.co.uk/2014/03/making-difference.html

Wednesday 19 March 2014

Another trip to St. Helier

Yesterday, i had another appointment with Vicky-my stoma nurse. Shes very happy with my progress and lets me decide when to see her nowadays.

After the appointment, i wondered around the hospital for a bit. I want to try and stop affiliating St. Helier with horrible memories. I walked around all the places i'd walk when i was in there, went in the same lifts, looked at the entrance to each ward..it was strange. I knew what was going on behind those doors first hand.

I then went to have breakfast in the canteen, where a very odd thing happened. I ordered myself a sausage baguette, because i distinctly remember that being the first big thing i ate after my operation. Once i finished, i walked through the door that said "EXIT ONLY", which leads to the exit of the hospital. As i walked through it, something occurred to me; i must have been to that cafe over 20 times, and yet i had never walked through that door. Every other time, i would go back to my bed on the ward. It sounds stupid, but it hit me pretty hard and i dont even know why. It felt strange eating there and then not slowly limping back up to my ward and getting back into bed...this time, instead, i walked out and drove to school. It was bizarre and i dont know why its got to me so much. Don't get me wrong, it was great walking out the EXIT door instead of back to the wards, but it made me realise how long i really was in hospital for, and how accustomed i became to it.

But, like i said, appointment went well and at the moment things are looking up x


Monday 17 March 2014

School Creative Writing Entry (WARNING: hard hitting)

Its a vamped up version of a post you guys have already read..only far better written.


“Saturday”

Every day had its bad points. Even the best of days would involve an incident that left him wondering; “why me?” This day, though, was a day that will remain in his memory like salt in the oceans. It is cemented in, deep, haunting him, stalking him. To kill the memory would be to kill himself; the memory, the, becoming his murderer.

“It was a Saturday. Mother and I were shopping in Kingston. We stopped off at the food court for lunch before heading home. The trip had been successful; I’d found my new jeans and mother her jacket. She went up to get our food and asked me to stay with the bags to ensure that they weren’t stolen. For anyone else: no problem. However, as she was queuing and I was watching the bags, an urge hit. The nearest toilet was at least a two-minute walk away. I didn’t know what to do. I couldn’t leave the bags but I couldn’t stand in the middle of a crowded room and soil myself.

I panicked.

I walked as fast as I could through the crowded room, clenching tighter with every step. My efforts were futile. I kept a brave face on and pretended like it hadn’t happened. I calmly walked to the door of the men’s toilets and, with my head held high, entered.

I don’t know why I chose to not wear a diaper that day, but the demon of regret sat there laughing at me as I lost another pair of boxers to Ulcerative Colitis. I waited to hear that the sink area of the toilet was empty before rushing out of my cubicle, putting the dirty underwear in the bin and escaping without being seen. I returned to our table at the food court before mother had realised I’d even left. I didn’t bother mentioning what had just happened; I just ate my lunch and smiled; smiled like everything was alright. The same smile I would force each and every day since being diagnosed with this awful disease. She bought it, just like everyone always did.

The experience in the food court was, as much as it pains me to say it, normal by this point. On numerous occasions, I would have accidents without people realising and quietly sort myself out. It is what happened next that haunts me in my sleep-the Freddy Krueger of my dreams.

At approximately 16:35, we got in the car and began the hour drive home. I was at the wheel, as I wanted the practice for my imminent driving test that I was so desperate to pass. The sun was shining, the radio was blasting and the food court memory was slowly fading away.

We were approaching Worcester Park, so home was still another 30 minutes away, when my tummy rumbled. A shot of pain in my lower abdomen queued the urge.

It was bad.

I saw a pub to stop at and go, but it was too late. Three seconds after the urge had hit, three seconds, disaster struck for the second time that day. The food court incident was a mere paper cut compared to the coma in which I had now fallen. It had not occurred to me until a few moments later that not only was I not wearing a diaper, but I was no longer wearing underwear due to the prior mess. The new jeans that I had bought only that afternoon were ruined. The leather seat of my car-to-be was ruined. My confidence, pride and self-esteem were officially ruined.

The noise and, of course, the smell, made it impossible to hide from mother. She offered support but I immediately cut her off. “Please, don’t say anything”.

I opened the windows and we sat in silence for the remainder of the journey. I held back the tears and focussed on the road, trying to ignore the fact that my legs and buttocks were covered in my Colitis ridden, warm, bloody stool.

We pulled into the driveway to the sight of my father standing in the porch with a towel and a black bin bag. He wrapped the bag around me, like a giant diaper, and I slowly waddled into the porch, up the stairs and into the bathroom.

The floor of the shower turned from a crisp white to a mixture of red and brown. I had asked my parents to leave the room, so that I could clean myself in an attempt to regain some sense of self-worth. I didn’t need them. Having them help by this point would have been too late. The damage was well and truly done.


I dried myself off, put on new clothes and walked downstairs. No one said a word. The day just carried on, just like all the others. We sat eating dinner pretending like what had happened was normal. In a sense, though, the months of rectal bleeding, popping 30 pills a day and multiple accidents had created a sense of normality to the events that Saturday. A sense of normality far from normal.

Things really are looking up!!

Lots of good things are happening at the moment.


  1. The suppositories are working!! I am currently not wearing a bag over my fistula and am just using a gauze, because it is drying up! The pain when i sit down to let liquid out has disappeared and the liquid is black without a hint of blood in it! Finally a medication seems to be working!
  2. I placed relatively highly in an international debating competition on the weekend, which was such a wonderful experience. Spending the whole day arguing, what could be better?!
  3. I've started my new job and really enjoy it. Working out in the sun, talking with people for 90% of my day, its really lovely and much better than being cooped up in an office for hours on end.
  4. I'm starting to feel really good about things and, truly happy.

Lets hope this all continues!!

Thursday 13 March 2014

Another course of suppositories

Once again i have been prescribed suppositories to clear up the colitis that has remained in my rectum (proctitis). This is the fourth time that i have been put on these and the previous three attempts showed little or no positive results.

I put the suppositories through my mucus fistula, as it is connected to my rectum and of preference to me than putting up the back way. It hurts, a lot haha. Its not the suppository that hurts, its my finger that hurts it when i push it further down. I have to get a third of my finger in before the suppository is in deep enough. Someone needs to make an applicator for suppositories.

But, you know the old saying: fourth times a charm! ...

Tuesday 11 March 2014

My New Project: Colitis Awareness GO

So, i am not happy with the lack of awareness that there is for Colitis (and Crohn's), so i want to do something about it.

My plan is to travel around schools, like i have already done with Harris Academy and am soon to do at Royal Russell, speaking to sixth formers about my story and what Ulcerative Colitis really is. I will then speak about the Crohn's and Colitis UK charity and how important donations can be to help find a cure. To entice people to donate, and to aid in raising awareness, i am going to create and purchase customised wristbands which will say "raise awareness" on one side and "ulcerative colitis" on the inside and sell them at my talks-not for profit, but all of the money that i make from them will be donated to the charity crohn's and colitis uk. I also hope that when people see others wearing the wrist bands, they will ask "hey whats that?" and then awareness will increase simply through word of mouth.

If anyone reading this thinks that they're school would welcome me in to talk to the students, please contact me through the blog or my email wyatt2401@icloud.com

I really want to start making a difference.

Saturday 8 March 2014

Its the little things that piss me off

Right now, I've had an awful day and i cba to do anything. But, its change day. I REALLY cannot be arsed but i know i have to. Its times like this where i get unnecessarily angry that i have to do this.
Im just sitting here cutting and preparing my bags thinking "this just isn't normal" like when people wanna shower they just hop in, not sit and prepare for 5 minutes and then spend time after sorting themselves out. They just dry themselves. Yes i now do everything far quicker, but its still bloody annoying and mentally difficult.

EMAIL WAS HACKED

My new email is now wyatt2401@icloud.com

I got the job!

My trial day went really well yesterday and at the end of it i was offered the job! my first day is next saturday!

I was pretty exhausted after it though. 7 hours of physical work (lifting, moving things etc) was pretty tough considering i haven't used any muscles for exercise in nearly a year. I think in time it'll get easier but these long shifts may be quite tough to start with

Friday 7 March 2014

My trial day at the garden centre!

Soo i passed the interview at my garden centre job and today is my trial run. Unless i severely muck up or they've found someone else better in the last week, the job is so nearly mine!

Tuesday 4 March 2014

Finally, some proper school work!



During my time in hospital, i missed the weeks where my psychology class did the fun experimental coursework. Now though, my new year group class are about to start it so i get to join in with them! It feels so good to be doing proper work again-school work that matters. I love coursework and especially adore psychology.

I really am going to put 110% into this piece of work because its the first i've had in months and months. I'm very excited to see how it turns out!

My First Assembly at Harris Academy!

Earlier today, i was given the honour of speaking to the year 12 students at Harris Academy, Crystal Palace. One of the students wants to raise money for Crohn's and Colitis UK and asked me to speak to the students about what life is like with colitis.

It was really lovely, i've gotta say. I really enjoyed getting to do a bit of public speaking again, but mostly i enjoyed educating people about IBD. I spoke from the heart and and talked mostly about:
  • life before colitis
  • what colitis changed in my life
  • the medications
  • surgery
  • what the future has in store
The students were incredibly respectful and listened to every word. Some stayed behind at the end to chat with me and some even appeared to tear up during my talk. It was refreshing to see people want to do something about Colitis and take such an interest in my story.

I thoroughly look forward to going back tomorrow to speak with the year 13s! :)

Monday 3 March 2014

Flexisigmoidoscopy day (mini colonoscopy). Not a fun and happy post.

Today was the day of my colonoscopy. Obviously, it was not a full one as i dont have a colon to look at haha, but it was to look at the extent of the colitis still in my rectum.

I'll start with the good news: my rectum isn't as bad as my Doc thought and "should" be able to be fixed with suppositories for a few months.

The bad.

  • Today was the first time i'd had a colonoscopy after surgery, so with the bags. This meant that a lot of the regulations and rules for having a colonoscopy didn't apply to me. I had to explain this to several different nurses and it became a shade tiresome.
  • As i've had these so many times, i am no longer given sedation. When i was sitting in the recovery room, everyone had a cannula in their arm after being given sedation, but not me. I just lie there, fully conscious, whilst a doctor and his 3 nurses shove a telescope up my arse and discuss the lining of my rectum. The pain, the discomfort, its indescribable. I hate it so much now. I cover my head with the bed sheets and just sing songs to myself to pass the time. 
  • Obviously, my rectum doesn't join up to my bowel now, it comes up to the surface below my belly button (mucus fistula) so that i can put medication down it. So, whilst they were shoving stuff up the other end, all the blood was pouring out this end. I could feel it all down my legs and over my belly. I could hear my fistula passing gas which really hurt.
  • They took biopsies for further investigation, which involves taking pieces of my tissue to look at more closely. That too hurt a lot. 
  • When i was wheeled into recovery, the nurses were originally surprised to see me sitting up normally and not sedated as everyone else was. I then discovered that my shorts bed and everything were covered in my blood. The nurses in the operating room said they'd cleaned me. They lied. My belly has blood, legs, shorts, bed sheets, everything. I sat there waiting to be cleaned for a good 10 minutes from once i got in.
  • Lastly, though it may not seem a big thing to others, each nurse would look at me, look at my file, ask "how old are you michael?" I'd reply "i've just turned 18". Their reply: "noooo you're far too young for this". Do you think i dont know that?! how is reminding me or telling me that im abnormally young for these types of things going to make me feel any better?!
So yeah, it wasn't a great trip up to St. Helier. Oh, and to top it off, my plan of doing the first op, going to uni for first year, having the second op then going to second year uni-so that i would;t be 2 years behind-has completely failed. I asked my doc and he said the two ops have to be around 3 months apart. So thats that.

Overall, cock.



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.

Thursday 30 January 2014

Looks like another medication has failed

Last week, after my appointment with the stoma nurse went badly in terms of my rectum bleeding badly, my surgeon put me on a very strong but short dose of an antibiotic. By the strength of them and reading up on them, they should have cured the bleeding. However, im arguably bleeding more than last week now and still have very bad pains.

So now it is colitis 7-medications 0.

Tuesday 28 January 2014

Its that old saying...

You never know what you've got until its gone.

I'm sure all of you, like I used to, take sitting on the toilet and emptying your bowels for granted. But, after just 2 months without shitting, lord i miss it haha. I mean, if i was born with a stoma bag, i obviously wouldn't be saying this. However, i know that what i do is different to before now and i know it isn't the norm.

When i was in morrisons the other day and emptied my bag in the toilet, i wondered to myself: what do others think im doing when they hear me in here? They here straps being undone, then a long loud sound as my stuff falls into the toilet bowl. Its either a really short but powerful piss, or severe uncontrollable diarrhoea! Of course, its neither. But 90% of people don't even know stoma bags exist so how are they to guess it may be that?!

I've gone off topic. Basically, i miss taking a shit. Sorry to be crude, but thats all.

Monday 27 January 2014

New found lethargy

For the last two days i have been incredibly tired. I have napped a lot and slept well but the lethargy refuses to leave me. It is making it very hard to do much and today i simply didn't have the energy to go to school. It could be from the heavy birthday weekend, the new antibiotics im on or something else. Either way, i really hope it goes away.

Sunday 26 January 2014

My Gatsby Party!

Last night was the night of my 18th Great Gatsby themed party. I was so happy by the effort most people made with their outfits and it seemed as though everyone had a great time! My parents enjoyed it, Zara enjoyed it, all my friends enjoyed it, and i enjoyed it! The white suit went down a treat and my bags behaved beautifully as a birthday present to me.

Thank you to everyone who came and made it a special night!

Thursday 23 January 2014

My last post as a 17 year old: a thank you.

Being 17 has presented me with an awfully large amount of challenges. It has, without a doubt, been the most eventful age i will ever live! There have been a horrid number of hard times, but, to be honest, the good times stick in my head far more than the bad. This year has taught me how to overcome difficulties, how to live in the moment and how to appreciate the little things!

When i was in hospital, all i could think about was certain drinks or activities, like nice warm baths or  freshly squeezed orange juice. Now, every good moment i have, i savour. Every moment that im not lying in a hospital bed or watching blood fall out of my backside, i thank God for. Yes, parts of being 17 have been shitty. But i am now entering manhood a much stronger and more resilient person because of all of those shitty parts. On reflection, they were all worth it.

I can't express how grateful i am for everyone who has helped me through this difficult age. From my parents, to friends, to Zara, to family friends and even my mothers work colleagues! Please don't think that any email or not you write to me goes unappreciated. Every one means the world to me so i would like to take this moment to thank each and every one of you for any small thing you have done to help this year.

18 isn't going to be easy either, i know that. Im not graduating and im probably gonna end up in hospital for more operations. But, this time, im going into these challenges with a better mindset and the beautiful thought of knowing that i have an army of support with me every step of the way.

For my final time as a child, thank you.

Wednesday 22 January 2014

A Big Decision

After being in school for a week and attending my philosophy and english lessons, it has become apparent that i've just missed too much to take those two exams this year. I can't remember anything from earlier on in the year and anything new im being taught just doesn't go in. Even when it comes to basic reading and spelling i make errors. My brain is not in a good state and because of it i have decided to not take any exams this year whatsoever. I think it is for the best.

Update from my surgeon:

After my nurse spoke to him about my fistula and how much blood and mucus it is expelling, he has decided to take me off the suppositories for good and put me on a 5 day course of very strong antibiotics. They can make me feel incredibly sick, but i rarely throw up so hopefully that won't be an issue.

He has also pushed my next appointment with him a few weeks forward as he knows he needs to see me quite urgently to see what the hell is going on down there.

I am not going to start the antibiotics until sunday so i can enjoy my birthday party and not feel sick throughout. Let's hope these work

From 'bad' to 'worse/down right awful'.

Today was a very, very difficult and hard day for me. One big thing plus a number of little things have left me feeling extremely low and frustrated with everything.


  1. I was told i could wear PE kit to be comfortable because of my bags. Then today i am told that i look bad for parents and people looking around the school so need to dress smarter. That, to me, is just pathetic. If the school's reputation hinders on how one student looks (and considering im wearing my schools PE kit so just look like I've got sport) then it needs to shape up. Secondly, i think its pretty shocking that i have to make myself uncomfortable and possibly suffer leaks just so outsiders think i look smart in school. They don't care! I could just be a sports person for all they know! It made me angry. Why tell me i can wear what i want to be comfy when i can't?
  2. Next, the big one, Warwick emailed me back saying that they can't change my offer. So now university this year is a 100% no.
  3. Im given special parking at school. A teacher saw me park, took down my number plate and reported me. Once again a scene was made about me parking there when it says that i am allowed to. Fed up of being singled out and being made to feel so different when i already fucking know im different then your average student at school.
  4. I leaked when with Zara again. Really upsets me when that happens.
Numbers 1 and 3 probably sound so minor and petty, but to me, all these little things add up and make me so frustrated, angry and upset. This week was supposed to be my birthday week with nothing bad happening, yet each day seems to be getting worse.

Tuesday 21 January 2014

January 21st-Stoma Nurse Appointment

If you read my previous stoma nurse post from two weeks ago, it was bursting with good news! I was told that my bleeding rectum wouldn't be an issue and all is well blablabla.

Today's appointment, however, was not so positive. All of a sudden, my nurse is concerned about what is coming out of my fistula ( a lot of bloody mucus) and is trying to arrange me chatting with my surgeon urgently. As i was told months ago, it does appear that a diseased rectum (probably) would prohibit me from having the operation i want to have.

Also, it turns of the great warwick post i made the other day, my nurse also reckons that i won't be ready for uni in september so even if warwick offer me an unconditional, i most likely wouldn't be able to accept it.

Wasn't a great appointment all in all. Sorry.

More to come:

I had an appointment with my stoma nurse earlier. It didn't go well. I'm gonna talk to my mum first then update you all because she doesn't like to hear about important stuff from my blog. Bottom line is, meh.

Monday 20 January 2014

you know whats reeaalllyy annoying?

When you're comfy and super tired, but realise your bag is full and you have to go and empty it. Like, when you dont have colitis or a bag or something, you can hold a shit if you have to. but with colitis, i had no power when it came to holding it in. now with the bag, if it needs emptying, i have no choice but to get up and empty it. its so silly i know but soooo frustrating!

Sunday 19 January 2014

University update

As most of you who read my blog remember, when i sent oxford the email explaining what had happened to me this year, they told me to re-apply next year. Pretty gutted.

However, i sent warwick a similar email and they have come back saying that they will do what they can to accept me this year with a much lower score/potentially an unconditional! They may decide this based on an interview because it is quite rare for warwick to offer such a thing, but im really hoping its good news sometime soon! May still be going to uni normal time yet!!

Saturday 18 January 2014

Just under a week until im 18!

I have lots of fun things planned and surprises waiting for me next week. Im praying that nothing bad happens and im just able to enjoy myself. In particular, i hope nothing happens on the night of my party. White suit would not be ideal stained with blood or, other things.

Bring on my final days as a 'child'!

Thursday 16 January 2014

The last 2 months..

2 months ago today, at roughly 9:30am, i was wheeled into theatre at St. Helier hospital to have my total colectomy. I awoke 8 hours later in HDU with one less large colon than i had earlier on in the day.

I cannot believe that that was only 2 months ago. It feels like a year ago i genuinely can't accept it being only 2 months ago. So much has happened it all seems like a blur. 2 months ago?! I was lying in HDU with my parents chatting to me, high off my ass on morphine.

Now, 2 months later, im sitting at my desk, cutting and preparing my two bags for changing night. I never thought i would be doing everything by myself so soon after it all. I probably wouldn't be able to if it wasn't for Zara pushing me to be more independent. My parents were incredibly helpful and did everything for me, but im nearly an 18 year old man. I needed to learn how to shower myself and do my own shit (literally). And now i do.

Thank you to everyone, friends and family, who have helped me get this far. If it weren't for you all, i would probably still be in hospital. Thank you.



Wednesday 15 January 2014

Regardless of the two bad days...

I'm still gonna go to school tomorrow and have a nice evening after. To show myself and everyone i can live a normal 'happy' life

Sorry

I regret to inform you that today was arguably worse than yesterday. Not in a great state of mind at the moment x

Tuesday 14 January 2014

First day back-not a great start.

As i feared, today wasn't great. I started the day with high hopes as i arrived at school and was happy to see everyone.

As the day went on and lessons passed, i became more and more tired. Around 12:30 i collapsed in the corridor on my way to the sixth form centre from tiredness and breathlessness. Perhaps i was walking too quickly. I regained my strength and continued with my day.

Around 1:30 i was chatting away with a teacher of mine when i realised my fistula bag had leaked blood all over the lower part of my shirt. I could smell the contents of that bag (blood and mucus) but luckily no one else could. I stuck out our chat then cautiously walked to the nearest toilet where i cleaned myself up and stuck tissues around the leak area. After regaining my strength, i continued with my day.

Lastly, it appears that both my english and philosophy teachers don't think i will be able to obtain top marks in my exams if i were to sit them this year. This is understandable based on the amount that i have missed, it is just disappointing. I probably won't end up taking them this year.

I will return tomorrow and hope for a better day.

Monday 13 January 2014

The result of taking Road B

Instead of going 5 times a day with bad pain and blood, i now go once a week with tremendously bad pain and blood. Still think this was the better option as its far less frequent, even if the pain is worse.

Back to school tomorrow

Tomorrow morning, after 3 or 4 months, i am finally going back to sixth form.
It will be my first day of school with my bags and new routine--it will be my first day being out of the house for so many hours in one go--it will be my first time in tight(ish) clothing for more than a few hours.

I have been dying to go back to school and be active and get my brain working again. But now the time has actually come, im pretty nervous/scared. I dont know how tired it'll make me. I dont know how comfortable ill feel around that many people with my bag. I dont know how sitting down on upright chairs for such a long period of time will effect the bag and stuff.

I will of course write a post tomorrow about how my first day went.. just know that i am finally getting back out into the world and trying to live a 'normal' student life. Scared as i may be, i am still excited and happy to go back.

Saturday 11 January 2014

I have reached a crossroad in my recovery journey

As already mentioned, i have been suffering with rectal bleeding for the last two weeks. I have been using suppositories and enemas to fix it even though I've used them in the past so know they won't work. HOWEVER, i have stopped using anything for the last few days and the bleeding has stopped. I have always been the type that when you stick something in my rectum, it irritates my inflammation and makes the bleeding worse. So, the medication is 'supposed' to fix it', but all it does it make me bleed more on the days that i use it. And every time i bleed i have the most extricating pain.

I am at a crossroad. Road A involves taking the medication like the doctor ordered and suffer bleeding every day and horrendous pain and wait to see if it works.
Or Road B, don't take the medication, dont bleed, dont suffer pain and wait and see if the inflammation disappears.

When written down, it seems pretty obvious which road to go for, even if it may not be 'medically advised'.

Thursday 9 January 2014

Another successful shower and change

Now im bleeding a lot from my rectum (both ways), I've had to go back to wearing my second bag. However, i am still able to do it all by myself and just makes my changing session an extra 2 minutes longer. I am nearly able to do it all with my eyes shut if im honest!

Wednesday 8 January 2014

OUCH!

ok so a new symptom has occurred and is a pain in the arse-quite literally. When i sit down to bleed, my rectum hurts so god damn much; it actually makes scream. I dont know why it causes me so much pain when i go but it does and its really distressing.

Tuesday 7 January 2014

Finally some good news

I saw my stoma nurse today. She told me that the rectal bleeding is nothing to wordy about because, and get this, for the main pouch operation the surgeons remove the lining of the rectum where the inflammation is anyway. So it wouldn't matter unless it got really really bad! So, potentially, happy days again!

School plan:

Going into school this morning to have a meeting to discuss what the hell im gonna do for the rest of this year. I think just philosophy and english and take those exams this may, then do my other subjets next year and yeah. Two years of upper sixth yaaaaay..

Sunday 5 January 2014

A small wish of mine

I wish i could go away somewhere. Anywhere new. Just to sort my head out and relax for a bit. Thats all. Bit of an easier request than a new colon..

Sorry I haven't posted in a couple of days

Its been a bit hectic. After going to hospital again i just kind of shut down. Its all getting a bit much now im coming to terms with the fact that im probably going to have the bag for life. I dont want to, but i know thats what is going to happen.

There are many positives to it i know, but so many sad emotional negatives.

  1. my kids seeing their daddy with a bag on his stomach and trying to understand why
  2. not being able to go swimming or go to the beach without wearing some special thing to cover it
  3. not being able to wear tight shirts or just normal fitting t-shirts 
  4. never ever having a shit again. like ever.
  5. going to a new place like uni and being known as 'the guy with a bag' because no-one would have known me be anything else
  6. knowing colitis won.

Friday 3 January 2014

Bad night

Could do with a friend.

Update from my trip to hospital this morning

I basically have proctitis again, just like i did in 2012. The suppositories im on aren't working so i have been given stronger foam enemas. I used them pre-op and they didn't work but they may work now who knows.

The good news is that i haven't been admitted into hospital. The bad news is my rectum my isn't playing ball.

Back to hospital we go.

Called someone at St. Helier to discuss my bleeding. Told me to come into A&E to then probably get admitted and seen by the surgical/gastro team to figure out whats up.

Back we go.

Thursday 2 January 2014

New found independence-i do my bag alone!


I have said goodbye to my father with all of my bag stuff now. I shower and change it all by myself, and thought i'd show you exactly how!
Prepare bag and template, cut template, get bag ready by sink, put removal spray and plastic waste bag by shower, dry myself, stick washer on bag, stick bag on me. Voila!









I want to take up boxing

So i've had so much aggression built up in me over the last few months that i want to take up boxing. Probably not competitively as getting punched in the belly may be catastrophic for me...but just a class at a gym.

Wednesday 1 January 2014

New Year's Resolutions

Even though i have little hopes for 2014, i think its still important to go into it with optimism and my head held high. With this in mind, here are my new year's resolutions:


  • have a more positive outlook towards my hospital adventures 
  • keep a more open mind about the chances of living with the bag for life
  • dont't depend on my parents and zara so much
Bring on 2014.