My 2013 with UC-summed up in a single blog post.

January: Inflammation in rectum reduced from 6 inches to 2 inches. Looking positive

March: began going to the toilet up to 15 times a day. Began course of suppositories which caused a lot of discomfort and distress. Anaemia began. Had first accident at school which lead to an episode of self-harm at home. Put on first course of steroids that week.

April: anaemia worsened and i began very pail. Full colonoscopy showed a full metre of large colon inflamed and diagnosed with extreme Ulcerative Colitis. Increased steroids and other tablets-tablet count at 30+.

June: continued decreasing steroids and symptoms reduced and improved. As my dad put it "to us it seemed that the worse must be over"

July: belly pains began at end of holiday on Spain and blood began soon after. Contacted doctor who put me back on small dose of steroids.

August: no improvement with steroids so increased. Also increase azathioprine drug. As month continued, colitis worsened. Put on £600 fortnightly jabs which should work.

September: jabs didn't work.

October: admitted into hospital for bad flare up and kidney stone caused by colitis.

November: Dr tells me i need surgery. Admitted into hospital november 13th-operation conducted on november 16th; full colectomy.

December: living with a mucus fistula and a stoma. No large bowel so no colitis in that area. Potentially still some in rectum so continuing course of suppositories.

LETS SEE WHAT 2014 HAS TO OFFER EH.

The effect steroids had on my face (in terms of weight gain)

Before steroids:

Whilst on steroids:

Coming off steroids:

A very bad experience. (a paragraph taken from my book)

this all happened in the late days of summer 2013

I remember one day very clearly. Mum and I were shopping in Kingston. We stopped at the food court to get lunch as we had bought all that we needed to buy as our last activity before heading home. Mum went up to get our food and asked me to stay with the bags to ensure that no one stole any of them. For anyone else, no problem. However, as she was queuing and I was watching the bags, I got a searing urge to go to the toilet. 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 and tried to walk as fast as I could to the closest toilet. My efforts were futile. I waited to hear that the sink area of the men’s toilet was empty before rushing out of my cubicle, putting my dirty underwear in the bin and escaping without being seen. I returned to our table at the food court before mum had realised I’d even left. I didn’t bother mentioning what had just happened; I just ate my lunch and pretended everything was alright. This wasn’t the bad part-that comes next. We got in the car and began the hour drive home-I was driving. We hit Worcester Park, which was still another thirty minutes from home, when i got a sudden urge. I saw a pub to stop at and go, but it was too late. Three seconds after the urge struck, I had had an accident. Bare in mind, I now had no underwear on because of the previous accident so my new jeans were ruined, I was sitting in it so it smeared all over me, and we had 30 minutes left to go. Another thing to bare in mind, that what came out of me in this accident, like all accidents, wasn’t your usual stool. It was a runny, loose stool mixed with blood. I held back the tears, opened the windows, asked my mum to not say a word and just kept driving. When we pulled into the drive way, dad was waiting for me with a black bin bag and a towel. We wrapped the bin bag round me like a giant diaper and slowly walked into the porch. We undressed me, wrapped me in the towel and moved towards the bathroom. I showered myself off, put some fresh clothes on and continued with my afternoon. Two accidents, one afternoon, one broken teenager. 

Warning:

The next post is a bit graphic and sad. It was a very bad experience i had during my time when my UC was at its worst. It is a paragraph in my book which i would like to share with you all.

First bit of exercise in a very long time

Pre-surgery, i couldn't exercise properly because of how tired i was and i couldn't be sure if i was going to need the toilet or not.

Post-surgery i couldn't exercise (at first) because i was recovering and am still very tired.

However, today i re-joined my gym. I went in and figured out what things i can do there. I can use the treadmill, the arm-bike and the bicycle. Thats it for now, but i intend to go most days and do a good 20 minute walk and maybe some of the other things as well.

I am very tired after my 20 minute warm up session but it feels good to try and be getting back to normal.

How time flies

Tonight, my family and i went out for a curry. We went to the curry house that we went to the night before i was admitted into hospital for my operation. That was only 6 weeks ago. Last time we went there, i got awful tummy pains after the meal and had to stay in the toilet for 15 minutes. This time, i ate in peace and had no issues. I am expecting my stoma to be a bit more active over night after such a big heavy meal, but that i can deal with.

What has hit me a little is that the last time we went was just 6 weeks ago... the amount thats happened in the past 6 weeks is ridiculous. i can't quite process it all to be honest. it feels like its been a year since i was in hospital thinking that i was going to die. and now here i am-smiling, typing away.

I guess the message behind the post is that when you think things are so bad that there is no return, things will get better and most probably faster than you imagine. i honestly thought i was dying in hospital. i didn't want to live. i thought things were going to stay that bad. if someone told me 6 weeks from now i would be where i am now, i would have laughed. so stay strong and think positive; it will get better.

I AM ABOUT TO TRY HAVING A BATH FOR THE FIRST TIME

OK so my stoma nurse said im able to have a bath because water doesn't make my bag come unstuck. she better be right...

i am so excited to have a bath. i used to have like 5 a week before my op so providing this goes well i will return to having baths!

please god let this go down without a hitch

Problem.

So, here's the thing.

My colitis spread to my rectum as well as my large colon; which is unusual. If my rectum doesn't heal up, the surgeons will remove it and i'll live with the bag for life.

I have been put on a course of suppositories, which did not work in the past, to try and heal the inflammation left in my rectum.

As my rectum is not connected to anything, i dont go to the toilet like most people. However, every now and again i get the urge to sit on the toilet to let some residue of the suppositories come out. Recently, a clear/brown liquid has been coming out. This was a good sign.

However, today, the blood officially started again. This could be very bad news. If it persists, i'll have to tell my doctor and it won't look good. I really thought these damn suppositories were working, but if i continue to bleed, it'll be bye bye rectum, hello bag for life.

Still have the odd blip here and there..

So today was going like any other day was-good sleep, watched some tv, played some playstation, the usual lazy day. Then after laying in bed for no more than 10 minutes, i got up to check my phone and just, collapsed. My eyes blackened and i lost all sense of sight and hearing. I lost control of my legs and began to fall. Luckily there was a chair in front of me which i grabbed on to, or i would have hit the floor pretty hard. I concluded it was due to lack of food and water today, and the fact that getting a cold this soon after surgery is pretty bad.

This is the worst of its kind to happen to me. Usually, when i get up from sitting or lying down, my eyes go black and im blinded for a few seconds, feel dizzy, then come back around. This time, it scared the crap out of me. Its a combination of recovering from my op, low blood sugar and low blood pressure due to everything thats happened recently.

It was not a fun experience.

My first christmas with a bag

Today was an interesting day. It was the first time that i was really able to compare an event with and without a bag.

Last christmas, i spent all day drinking champagne, eating whatever i wanted and smiling. This year, i stuck to my orange juice, ate what i could and was pretty shattered for most of it.

It was tough today, noticing the negatives. But with a little help from a special someone, i was reminded of how positive this new life is too.

Merry christmas everyone.

I want one thing for christmas.

A new colon.

But that can't happen.

Last stoma nurse appointment of 2013

Today, i had my last appointment with one of my stoma nurses of 2013. It went really well and she is very happy with my stoma and mucus fistula. Apparently i have a very 'healthy' stoma haha. She put the bag on that will carry me through christmas day and now i just put a little dressing over my mucus fistula, which is sooooo much nicer.

Happy days and happy christmas!

Finally making a difference

I was contacted the other day by a journalist from a newspaper (will remain anonymous). The journalist was looking for someone to conduct a case study on to show how psychotherapy can help improve/reduce physical symptoms of illnesses such as IBD. After hearing my story over an hour phone interview, she couldn't be happier with what i had said. In a month or so an article will be published about my story and how psychotherapy helped me, and why others should give it a go.

I feel as though i have finally made a difference. Therapy helped me hugely with all of my illness, so i just hope when others read the article they will give it a try. Therapy always seems scary before you try it, but once you start, you never want to stop.

It isn't all that bad!

I am finally starting to feel positive about having this operation. I'm starting to feel a sense of pride over my stoma and am proud of what i've managed to do. This IS a better life than i had before. Yes, the bags are an inconvenience, but i'm finally healthy! It's amazing to be off all drugs and to not be living on a toilet. God bless the magic of surgery!

18/12/13-AKA my best day of 2013.

The 18th December was a terrific day. It was my girlfriend's birthday and i had improved enough to take her up to london alone and go for a lovely drink at the Waldorf Hotel and then have half an hour of ice skating at somerset house. We were stupendously awful but that is what made it so fun. If anyone was to tell me one month and 2 days after having my op i would have been ice skating in london with zara, i would have laughed at them. We had a really great night together.

After that i went to whitgift to catch the second half of the charity concert. The prefects dance was on last and the guys said if i made it on time i could make a surprise appearance and just come on stage. I danced around with my cane like there was no tomorrow and the cheer from all my friends in the crowd was so amazing. It made me so happy to be up on that stage with my friends, especially considering no-one thought i'd be able to be!

A truly perfect day-even with a couple of bags.

Prefects' dinner

Tonight was the night of the annual 'Prefects' Dinner' at my school. It was a black tie event so i needed to find a way of wearing a tux and the bags-which i did just fine! I thoroughly enjoyed spending the evening with my school friends; most of whom i haven't seen in months haha.

Afterwards we all went to Old Whits (a rugby club with good drinks) to continue our night. I had half a pint of beer as a treat and it felt good to just relax a bit.

Yes, i was slightly on edge as i normally am when i go out at the moment. Checked my bag a few times to ensure it was stuck on...got a bit out of breath every now and again...but overall it was a fun evening which has left me in good spirits.

Why I'm scared to fall asleep

Every night for the past week during my main sleep at night, I have had horrible nightmares. Each nightmare includes a different disaster involving my ileostomy. In one dream, it got blocked and i had to go to hospital. In another, the bag fell off in public and i had to run away. In another it leaked loads in bed. Every night something new happens and its really affecting me mentally.

I put off sleeping just to avoid the nightmares. But I'm so tired I may just have to do it.

BYE BYE STEROIDS

As of today, December 16th 2013, I am officially of steroids for GOOD. My 30+ tablet count is down to ONE and that is for my anxiety-not even my colitis! Finally the stress of taking that many pills a day is gone forevvveerrrrrr!

Gosh if i could only explain the side effects those buggers caused..especially the steroids. Some of the other pills caused some too, but none quite as bad.

Here are SOME of the more major side effects:

• tiredness
• nausea
• irregular sleeping pattern
• spots on my face, chest and back
• fat face 
• prolonged ejaculation (not as good as it sounds, trust me)
• difficulty staying erect for long periods of time 
• horrid mood swings
• searing head pains
• raging hunger
• shaking

so yeah they are the main ones and now once all the meds are 100% out of my system, they'll all be gone! The magic of surgery eh.

I shouldn't be here right now.

Instead of lying in bed, bored, watching crappy day-time TV, I SHOULD be in Oxford doing my interviews to get into the university college of my dreams. But, no.

I only realised last night that these few days were the days I was supposed to be in Oxford and its upset me a bit remembering. All that hard work-wasted.

Okay, so maybe it isn't all positive.

I don't know why, but this afternoon has been tough-emotionally. I'm still so angry about everything. If i could wind back time..

I'm not just angry about the surgery stuff; i'm angry about pre surgery too.

I'm angry because:

• every doctor i had for colitis said i wouldn't need surgery
• the first doctor i had made me believe my anxiety caused my colitis
• the doctors and surgeons made surgery look all fun and games
• i don't feel at all in control of my body and i haven't been in control of it since october 2012
• i have to go through tedious processes daily which are truly revolting
• i was on so many FUCKING tablets (36 at one point) which did absolutely nothing
• i had countless enemas and suppositories shoved up my arse which did absolutely nothing
• i had many colonoscopies all showing the same results yet they kept doing them expecting to see something new
• i used to be attractive. now i repulse myself
• i have no idea when this torture will end.

My day at Winter Wonderland

Yesterday I went up to London with my girlfriend and her friends to visit Hyde Park's 'Winter Wonderland'. It was the first time i had travelled a fair distance since my operation so i was a little nervous. It was also the first time i had gotten trains and walked around for a long period of time.

I was excited and optimistic about the trip, until we stepped out of the cab at hyde park corner and saw the hour queue to get in. I didn't know how i was going to be able to stand in a very crowded space for a whole hour. As we got closer to the front, i began to get more and more tired; but i persevered. Eventually we got in and i immediately took a trip to the disabled loo to empty my bag.

We then walked around for a few hours and i watched the girls go on some rides-i didn't risk going on any rides because i wasn't sure if my stoma bag was made for such things. I was fine just watching them have fun, especially Zara.

As night fell, my tiredness did increase. I began to get more and more pain in my operation area and i was struggling to walk; but i persevered. I refused to be defeated and cause the others to worry or leave earlier than they wanted. I know i was a burden on them with my slow walking and prolonged toilet trip, but at the end of the day, there's no way i could have managed that queue with colitis pre-op. An hour with no way out and no toilet?! Impossible!

I made it home alive after being out for 6 hours. I had done it and i felt really proud of myself. Yes, it was very, very tough. But i had proven to myself and everyone else that i could do it.

Go me.

Book update

Just wrote the section on the urges and how to deal with them. Writing about the bad experiences I had with them over the past year made me realise just how bad life was living with colitis. No, living with a bag isn't great, but its a darn sight better than crapping yourself every week and having to wear diapers everywhere you went.

Writing this book is helping me see just how positive this surgery really is. Yes, there are hard days, but in the long run, this is a better, safer life to be living.

A very strange night

Last night i had a very disjointed sleep.I had multiple vivid dreams about my stoma becoming blocked and i needed to go into hospital to get fixed again.

I then awoke, or so i thought, to the smell of a leak. I saw brown on my sheets. I got up and turned on the lights..no leak. This is all messing with my head so much and its clearly causing me more stress than i thought.

Update from my surgeons

My surgeons were extremely happy and impressed with my recovery thus far. They want me to continue taking suppositories for a good few months. I have my next appointment in 2 to 3 months time where we will discuss the next step in more detail-but they are hoping to operate within 3 to 6 months which is really great.

Here is to the second op happening as soon as and not causing too many issues!

Today's appointment at Epsom Hospital

At 11am today i have an appointment with my surgeon-the one who actually did my operation. I am a little worried about what he may say. It is probably too early for him to be able to say when my next operation will be, but i have this image of him saying it won't be for at least a year or something worse. I'm praying he is happy with my progress and is able to see that im recovering well and will be ready for op number 2 in a matter of months-not years.

God i hope it goes well.

A bad outing

Tonight i went to the cinema with a good mate of mine. We had a nice time and watched a decent film. However, throughout the entire movie i felt like my bags were leaking and i couldn't relax. Sitting down makes my belly crease which isn't good for the bags, so i kept feeling and checking and feeling and checking. Not once did they leak. They've been fine all day. But the damn anxiety of a leak occurring ruined what should have been a really nice time out with my friend.

I guess i just don't have confidence in these bags



yet.

The final part of my book's introduction

"Ulcerative Colitis may not be a disease that can be seen on the outside and is obvious to the outside world, but believe me when I say it can cause someone to go from a happy, positive and energetic person to the lowest of the low. It is an incredibly difficult disease to fight but with support of friends, family and others in the same position, it can be made a little easier. I hope those reading this book find my experiences and advice helpful to read. Remember, you are not alone in this. Things will get easier. Yes, the medication sucks. Yes, the operation is scary. But it’ll all be worth it in the long run, and hopefully you’ll be able to see that by the end of this book."

Another good day

I had an appointment with my stoma nurse today. She was incredibly happy with my current state of mind and my physical improvements. She couldn't believe how far i had come in a week.

Also, emptying my bags is beginning to feel...normal. Perhaps this isn't as bad as i once thought (he says cautiously).

Improvements!

I just went for my first drive since the operation, and it was fantastic! I didn't feel any pain and the seat belt didn't effect the bags at all. I then went to the bank and decided not to take my walking stick, and i was fine! I have no returned home and i am not overly tired nor did i feel out of breath when walking!

Good morning so far!

A tough night

I've been very low tonight and i can't pin point why. Some nights it all just gets too much. Its not even like i had a bad day; it was actually pretty good. But the bags are starting to itch a lot and emptying the stoma bag just isn't getting any easier. The smell the colour the texture its all so disgusting. I hope soon it becomes easier.

I don't want to keep moaning and i promise i am trying my hardest to be positive and appreciate the chance at life that i have been given. I just wish it was a slightly different life.

Limitations.

I'm getting stronger and stronger each day, yet im still constantly told to 'take it easy' or 'don't worry about me just worry about yourself'. I want to go out and see how much i can do. I want to help my girlfriend, friends and parents out with their problems.When people tell me my issues are bigger than theirs so theirs don't matter, it makes me feel so shitty. All problems are equal and i share mine so i'd like others to feel like they can share theirs with me.

I know i have to learn to walk before i can run again, but i feel as though i have learnt to walk. I'm ready to start running. I will be able to take my girlfriend to London and treat her to fun surprises on the 18th, regardless of what my parents and doctors say.

My experience at Chiltern Church

I just returned home after my morning at church. I spoke for around 10 minutes about my journey with colitis and my recovery since the operation. I thanked everyone for their prayers.

Afterwards, i received countless hugs and hand shakes from people thanking me. I didn't understand what they were thanking me for. It was for showing them the power of prayer and how God works his miracles into our world. My recovery has been a miracle and i touched people with my story with God.

Amongst the congregation were several people who knew sufferers of IBD and even a man who suffered from colitis himself. I passed on my love and any information i could provide for them. It felt fantastic to know my words could help those suffering.

Morning!

Today i am off to Chiltern Church to speak in the morning service. Many members of the church prayed for me whilst i was in hospital so i feel like the least i can do is go and thank them all personally. Looking forward to being in God's house and thanking his angels for helping me through this tough time.

A snippet of my book's introduction

"Oh, I’m sure its nothing; just a little bit of blood. I won’t bother mentioning it to anyone.”

“Ok, the bleeding has been going on for a few months now, maybe i should visit the GP.”

“My god, Mr Wyatt you need to be assessed urgently.”

“You have proctitis; your rectum is inflamed but nothing a little medication shouldn’t fix.”

“I’m afraid your disease has worsened. Your entire large colon is now inflamed. You are going to have to start a very large dosage of steroids and a variety of other drugs."

"Nothing is working. These jabs are your last hope Michael."

"I don't know how to tell you this, but you need to have surgery. We're very sorry it has come to this."

All of that happened within the space of 13 months. The year 2013 was a year that I will never forget. It threw challenges at me that I didn't even know existed. Before October 2012, I didn't even know what Inflammatory Bowel Diseases were, let alone imagine I would ever be an extreme sufferer of one. Ulcerative colitis changed my life for ever. 

In October 2012, I was diagnosed with mild proctitis-inflammation of the rectum. The doctor who assessed me seemed to think that a few steroid enemas would do the trick. At first, he was correct. My six inches of inflammation reduced down to two inches within a couple of months. He seemed confident that if I reduced my anxiety and became less uptight, those two inches would disappear. However, by February 2013, a full colonoscopy conducted at St. Anthony's hospital in Cheam showed that a full metre of my large bowel had become inflamed and incredibly ulcerated. I was diagnosed with extreme ulcerative colitis there and then, at age 17, and had no idea of the journey that lied ahead of me. 

Ulcerative Colitis is an inflammatory bowel disease that can cause catastrophic effects on a person’s life. I won’t bore you with the science behind the disease because, for you to be reading this book, I can imagine that you have a pretty good idea of what it entails. However, for the benefit of those who don’t know, this is the short version: ulcerative colitis causes a person’s large bowel (also known as large intestine or colon) to become ulcerated and inflamed. This causes the sufferer to pass many, many bloody motions a day, normally between 10 and 20. The urges for these motions are often uncontrollable and the sufferer can have accidents if they are too far from a toilet. The loss of blood can lead to anaemia, tiredness and fatigue. Every colitis case is different, however, so do not take my explannation as a set in stone diagnosis.

What the medical journals and textbooks don’t show in the explanation of Ulcerative Colitis is the emotional distress that it causes—and that is my motivation behind writing this self-help book. Over the last year and a half, I have experienced emotions that I didn’t even know existed and have seen myself go through drastic physical and mental changes.  

My new project

So this blog has really inspired me to write about my experiences over the last year. I feel that if i had more information and emotional support from other sufferers during the tough times, they would have been slightly easier to process emotionally. Because of this, i have decided to write a self-help book for young sufferers of IBD.

The content of the book will include:

• a brief introduction to colitis and when i was diagnosed
• what physical challenges colitis throws at you
• medication and how to tackle the side effects
• emotional difficulties with colitis 
• preparing for surgery
• post surgery traumas 
• a chapter for friends and relatives
• You control Colitis, don't let it control you

I am really excited about the prospect of writing this book and if anyone has any advice on how to go about writing a book it would be much appreciated!

Waking up to a leak

So i slept well from 11 till 6 then woke up to find both my bags and become slightly unstuck and were leaking. so many issues with a leaking bag

1. the smell
2. the texture on your skin
3. it solidifies on your skin and sticks
4. getting to the toilet without dropping any on the floor is a mission
5. the process of changing it takes long enough to get me fully awake at 6 am.

just an annoyance really. frustrated. 

Rant.

you know what? i've been positive but right now i need to moan.

IT IS NOT FAIR THAT THIS HAS HAPPENED. dont get me wrong i know it could be worse, but it could be a hell of a lot better too. im so fucking sick of being tired and having these fucking bags. they leak they smell they make me itch and i HATE THEM.

I learnt to live with colitis and i'd do anything to go back to bleeding 20 times a day and swallowing 30 tablets a day. that was a form of a life i could handle. this isn't a life i want i'm not sure how much more i can take if im honest.

if anyone can find some positives to this, do share them because im close to giving up.

Tiredness.

So, after my wonderful day out, i am thinking that it may have been a mistake. I am absolutely exhausted. I just keep falling asleep.

In less than 2 weeks i am supposed to treat my girlfriend for a night out in london for her 18th. How the hell am i supposed to do that when i get exhausted going out for lunch and having a 30 second walk.

Take me back to 5 weeks ago-hate this.

POSITIVE outcomes!

So today i went out with my girlfriend and her friends. Today was the first time in our relationship that i was able to have a meal with her without having to get up to go to the toilet. It was so nice to feel relaxed and just enjoy her company and chat with her friends without the anxiety of "do i need the loo". Its times like this where surgery is just great.

Also, today was the first time since the operation that i went out without my dad or mum. I looked after myself and although i am shattered now, it felt so good to feel slightly independent again my god.

Things are looking up!

A question to you all

What part of what im doing or have said is inspirational? All i'm doing is surviving and writing about quite upsetting topics. I'm touched that some of you are finding this inspiring, but can you let me know exactly what it is im doing so i can keep doing it? I want to keep inspiring because you've all been so fantastic and i want to keep fighting for you

The process of changing the bags

So, tonight was bag changing night. I change my main stoma bag every 48 hours and my mucus fistula one every 12-24 hours. It's quite a long and annoying process, and i thought i'd explain it to those who want to know how it all works!

So, the dirty looking bag is the mucus fistula. The bigger one is the stoma bag. Here is how it all works:

• i get in the shower and clean myself off
• dad uses an adhesive spray to remove the mucus fistula bag and i clean around the area
• we then use the spray to remove the stoma bag and i clean my stoma-that part is hard to look at
• we then dry me down and walk me to my bedroom with a plastic bag over my stoma in case it becomes active
• we then cut a hole in the bag to fit around my stoma and use a special sticky washer to stick it to my skin
• once the stoma bag is secure, dad puts a suppository into my mucus fistula. this is to help heal any inflammation left in my rectum. 
• after the suppository is in, we secure the bag around my mucus fistula and make sure both bags are stuck on extra tight. for extra support we use a special surgical tape around the edges.

So that is what we do every 2 nights! its a long process but its keeping me alive :)

I apologise if the picture offends anyone.

The struggle with friends

One of the benefits to this surgery is that its given me the chance to open up about my condition to people. Before hand, i hid it. I hid it for a whole year apart from telling a handful of my closest (female) friends.

School was the toughest. I would miss countless days and hundreds of lessons, and some boys would ask why, naturally. I'd just respond with 'I'm ill'. Eventually, this response wasn't good enough for some people and they'd try and pry more information out of me. I wouldn't budge.

I gained permission to leave lessons whenever i needed to without asking, and to park in a special car park close to the sixth form centre. Naturally, both of these raised questions which again i couldn't answer truthfully.

The worst part of all though-socialising. Parties were shocking. At most parties, there is one toilet that people use. The issues were these:

• if i had an urge, i couldn't hold it very long.
• i would go to the toilet 5 times in one party which looked fairly strange.
• i would spend a good 5 minutes in there each time.
• the volume of blood i would excrete didn't have the nicest smell.

I was never able to relax when in public for fear of having an accident! I didn't do sleepovers because at night time i always had to get up to go to the loo. The only time i wouldn't go to the loo was when i was with Zara, my current girlfriend. I was always distracted and relaxed with her so just never felt the urge.

Living with a bag means i never get an urge to use the loo. In some respect, i have gained a little bit of confidence. 

I MISS SCHOOL!

Ok i have not been to school for like 2 months and its killing me! I am one of those nerds who actually enjoys studying and writing essays, so to be out for so long is really annoying!

what i miss:

• hanging out with friends daily
• using my brain
• relaxing during frees
• having lunch with the prefects
• tea breaks 
• getting good marks in my essays
• planning university :(

My night

I actually had quite a good night! My dad woke me up at 5 to empty my bag, which i did. However, i then didn't manage to fall back asleep until about 8 where i slept for 2 hours. I feel fresh this morning!

I have visitors coming over today which always puts me in a good, positive mood :)

Bed time

I'm going to try and sleep now. It's been a hell of a night with one down but many ups. Thank you internet.

M x

putting off sleeping

im lying here putting off going to sleep because i feel as though the later i stay up, the later i empty my bag and then the later i get up at night to empty it again. i just wish i could have a full nights sleep. im so tired and i want to sleep but i dont want to empty my bag i really can't be bothered right now. so if anyone fancies a chat, chat away!

SMILE

because it could always be worse

Fatigue.

I feel so tired all of the time at the moment. Trying to get used to the new sleeping pattern is difficult; waking up at night to empty my bag twice, its tough. I'm also still tired from surgery so that just adds to it.

I nap all day but it doesn't do anything. I just want some energy back!

I'm touched.

I have received countless messages tonight from friends and family wishing me well. It means so much to have all of this support-without it i really couldn't function. I want to get better for all of you now. YOU are my motivation. YOU are my reason for trying.

Thank you all so so much everyone. I will keep fighting. For you.

Shower time.

Showers are a funny thing now. I used to love showers, now they are just difficult. Its the time where dad and i change my bags and im forced to see the reality of how i look. its not a pretty sight. I miss my old body.

IBD forum

I have just made an account on the IBD forum and its great to be able to see other people sharing similar experiences. Its lovely to know im not alone in all of this.
#teamIBD

A quick thank you

This has kicked off much quicker than i expected! To already have over 500 hits is remarkable and i am truly touched. Please share it amongst your friends and families-i would love this to get through to sufferers of colitis or chrones.

Thank you for all your support.

My oxford experience short lived

So, i applied to university like any other upper sixth student. I applied to oxford, Edinburgh, durham, st. andrews and warwick.

A few days ago oxford invited me up for an interview-i was over the moon! However, i had to email my college to let them know about my surgery etc and how because of all the school i've missed, i would now be applying for deferred entry for a 2015 start.

They replied to my email saying that they feel it would be better if just withdrew my application and re-applied next year. Their reasoning behind this is that i would probably under perform in interview and not give myself a fair chance.

This is true-i would have under performed. But this oxford thing was the one positive thing in my life at the moment-well, the one thing i had to work towards. And now its gone. I just can't catch a break!

The emotional.

Ok so, this part sucks. If you don't fancy reading a slightly depressing post, stop now.

This isn't a life i want to live. Mum and dad keep telling me "this surgery gave you a life-your colitis would have killed you" and i know that, but i hate living like this. I feel so disgusting and i can't bare the sight of my physical appearance. I've lost a huge amount of weight and i have two bloody bags attached to me.

The issue with having the two is that the bags over lap, which makes sticking them difficult. This leads to leaks. Do you have any idea how disgusting that is? Its horrible. The smell, the feel of it on my skin, its so bad. And i can't do anything i just call my dad and ask him to fix me. I feel so helpless.

Over the last two weeks i have had countless people see me lying on a bed naked and been made to clean me. Its so degrading. For years i have been ludicrously independent and now i can't do anything for myself and it fucking sucks. I am so sick of relying on doctors, nurses, my parents and my girlfriend to get me through all of this. I want my old life back. I learned to live with going to the toilet loads i could handle it. I don't think i'll ever be able to learn to live with a bag-i hate every aspect of it.

Please, if anyone can tell me this life is genuinely going to be better than the one i had before, put your case forward. micheal-wyatt@hotmail.co.uk i could really use some positivity.

The physical side of things

As already explained, i have two bags attached to me. The main bag is the ileostomy-the one linked to my small intestine where the waste comes out. As horrible as it sounds, its working very well and once i got used to the smell, it actually isn't that bag. I change the bag every 2 days and empty it around 8 hours a day.

Night time is tricky because obviously the ileostomy continues to function whilst im asleep, so i need to get up a few times at night to empty it. This makes me quite tired so i sleep a lot during the day. I also sleep a lot as im still recovering from the operation itself.

My scar is healing very well and to be honest, im recovering much quicker than expected. The reason behind this is because im young and 'healthy'. Although it sucks having such a major operation and change at only 17, it does mean my body heals much quicker than most and im able to be up and about only 2 weeks after surgery.

My Story

So, what exactly happened to me?

In october of 2012, i was diagnosed with Ulcerative Colitis-a chronic inflammatory bowel disease which affected my entire large colon. I passed blood between 10 and 20 times a day which lead me to become very anaemic and fatigued. The urges to go to the loo were uncontrollable and i often had accidents. Life was pretty rough and living a normal life of a 16/17 year old was near impossible. I would leave lessons constantly, leave parties early, rush away from conversations to get to the toilet-the lot. I even had to wear adult diapers for crying out loud!

Now, there is a lot of medication for ulcerative colitis and i went through it all. I ended up on 33 tablets a day which included a huge amount of steroids. The medication messed me up in many ways and unfortunately didn't help my condition at all. I was the one case that the doctors couldn't fix.

The only 'cure' for colitis is surgery; something i was told that i would never need. Two weeks ago, i was wheeled into theatre and had my large colon (i.e. large intestine) completely removed. I now have an ileostomy-meaning my small intestine comes out of my body and excretes waste into a bag stuck to my tummy. I empty the waste into the toilet approximately 8 times a day. I also have another bag over what is called a mucus fistula-the top of my rectum. My rectum is still inflamed, so bringing it out of my body allows the doctors to apply any medication to the area directly.

I am hoping that my body heels and my rectum becomes clean so that in 6 months time, i am able to reverse the operation and, in short, connect the two parts that are out of my body together inside my body-creating an internal pouch. This will mean i go to the loo normally again, however i will go around 8 times a day and it'll always be a pasty liquid.

The job of the large colon is to absorb water and salt, so i need to ensure i drink more than usual and get in sufficient nutrients.

In my next post, i will describe the physical effects of living with a bag. After that, the emotional.

My first post

For days now i have been at home, stuck in bed, recovering from surgery BORED. I have decided to start this blog to give myself something to do and to document my recovery. I think it is important to share experiences like the one i have had with others who are going through or about to go through a similar process.

So, in my next post i will fully explain what has happened to me over the past month!