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.

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.

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.

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!

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.

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.

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.

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!

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!!

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'!

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.

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

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.

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.

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'.

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!

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.

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..

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.

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.

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.

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.