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.