The real world

I could be wrong, but I would believe that normal people after a three week stint in the hospital, complete with major operation, would go home and put their feet up. Maybe have a cuppa, watch a bit of TV.

I went down the road to the supermarket.

I wasn’t alone, I’m silly but I’m not stupid, there was no way I was going to be able to carry any food back with me.

Continue reading…

Worst Night Ever.

When I came out of the anaesthetic, I remember trying to hard to stay awake, to fight the sleepiness thinking that if I did, maybe I could go and see my mum and she could make sense of what was happening here.

Once I had been wheeled in, I tried so hard to show her my stoma because I really wanted to see what it looked like. However,  I forgot that under the gown I was naked and in my enthusiasm, nearly flashed the ward my birthday suit.

Those first few days were so rough. I thought I had been exhausted when I had Ulcerative Colitis, but no, this was a different kettle of fish. On the first day, I managed to sit out of bed in the chair beside me whilst the nurse changed my sheets and bathed me. I was so tired I couldn’t keep my head up and the PICC line that was in my neck felt so heavy that my head kept lolling forward.

I had to re-learn so much, because I had been sliced and diced through my core, something as simple as getting out of bed was absolute agony. And scary. I’m a pansy when it comes to pain, I don’t want it, it can stay away thank you very much! So I would have to gear myself up to get out of bed because I didn’t want to be in pain.

And I was petrified to eat! After a few days of being on liquids they encourage you to eat and I just didn’t want to. I was so scared that something was going to get stuck, so every thing that passed my lips was a mini victory. My mum was going around to all her friends “Steph ate a spoonful of mash, today is a good day”

Also, on a slightly unrelated note, why the hell didn’t anyone tell me how freakin’ bad emptying that bag is? The first time it had to be emptied I gagged, which is not fun when you’ve been sliced and diced through the tummy, let me tell you! That first bag emptying, literally smelt like Satan’s Pit. What the frick died in there?

And showering. Sweet mother of God. My first shower by myself, I deserve a medal for that bad boy. I was so incredibly exhausted that I couldn’t stand so I sat in a chair, and I couldn’t lift my arms up for longer than two seconds. How the hell I managed to wash my hair that day remains a mystery. In fact, how I even managed the whole shower experience is a conundrum.

Slowly but surely, I was learning how to do things again. I was able to get out of bed occasionally, on my own, I had managed to walk to the toilet, even if I did look like Golum attached to a drip. Its hard standing up straight, it pulls and it felt like I was about to pop something. Anyway, slowly things were getting better, I was moved out of the bay near the nurses and my PICC like came out too. I was eating more as well.

I was making a great recovery and then the worst night of my life happened.

My small intestine had a hissy fit and said “This is just too much for me” and he fucked off.

Meaning, he stopped working. My abdomen ballooned, and the pain that I was in literally had me crying and I’m usually okay with pain. I suffer on through it but not this time. The doctor came in and he said “Blah blah blah back passage blah blah fluid blah blah relieve pressure”

I’m sure that’s not what he actually said but I was crying too much to hear him properly. The nurse rolled me over like a beached whale and the doctor put something up there to relieve some of the fluid that had accumulated and man did I scream.

My poor mum was in the corridor listening to her daughter in so much pain, it must have been so horrific for her because there was absolutely nothing she could do.

That night was absolutely awful, I asked a nurse to knock me out with something because I couldn’t handle the pain and I felt so bad because I was trying so hard to not make any noise because of the other patients on the ward but I couldn’t help it.

The next morning I was spewing, and it was awful! Eventually they fitted me with a lovely NG tube. Which is piece of plastic tube inserted through my nose, down my throat and into my stomach so they could empty the contents of my stomach. My, what a pleasant experience that was because your reaction is “GET IT THE FUCK OUT OF THERE” and you gag to stop it.

I spent the majority of the morning extremely groggy from the anti-sickness drugs that I was on and an amazing nurse stayed by my side, for most of the morning, holding my hand and making sure I was okay.

By the afternoon the pain had lessened and I was taken down for a CT scan to make sure that there was nothing too serious going on.

Luckily there wasn’t and it was explained to me that sometimes the small intestine unfortunately just stops working. It goes into a kind of shock because a) its been manhandled and b) its lost the large intestine so nothing was being digested and it was sitting in my stomach, hence why I had the pleasure of being sick.

After that little hiccup I went from strength to strength. I learnt how to successfully change my bag, which I will have a chat about in another blog post. I was eating, and moving around, not as Golum like as before but still quite hunched and in general, was just getting better.

I was so thankful to be let out of hospital because I desperately needed some sleep. It’s crazy how tired you become in there, all the poking and prodding, the noises of machines, the noise of other patients. A place where you have all the time to sleep and yet none of it feels like restorative sleep. I was forever waking up exhausted and I couldn’t wait to be in my own bed.

But then that alone brings a whole new set of problems! Now I had to learn how to do things on my own, and in the “real world” with out the support of the nurses.

Trip down memory lane

Its time to jump on my flying memory carpet. Lets fly through 2012, 2011 and arrive in April 2010.

I had been keeping my IBD under control with Azathioprine but I was still having trouble, things were far from perfect and my gastroenterologist wanted to up my medication to the next level and to be honest I can’t remember whether it was infliximab or cyclosporine that he wanted me to go on.

Either way I just knew that things did not look good and surgery seemed imminent. I wasn’t responding to medications, but I was glad that there was another option for me to try.

Unfortunately this option was taken away from me.

I was working, the busiest day of the week, Sunday for all you lucky people who do not work in hospitality, and yours truly passed out.

Middle of the pub, out cold. I came to, very confused and shakey and was sent to bed. At the time for those wondering I used to live about the pub, I didn’t just set up shop somewhere out back.

Stupidly, I went back to work in the evening, not because my boss asked me to, but because the pub was short staffed and struggling, it was Easter weekend and I wanted to help my team out.

I had never felt so rough in my life. I had a fever, was shaking but I got through the shift and even went to work the next day.

Thought I had never felt so rough on that day? The worst was yet to come. I took the next few days off and I had never been so poorly. My fever was unreal, I was wrapped up in bed and my partner at the time would get into bed and literally yelp at how hot I was.

Major giggles at the word partner by the way, society needs to come up with another word for your other half because partner sounds a little too conservative and boyfriend makes me sound about 14. Manfriend,sounds like I’m a a bit on the promiscuous side of life and lover just sounds a little bit to much like some weird erotic novel.

I seem to have gone on a bit of a tangent, anywho…

He begged me to go to the hospital but I refused, saying I would get over it.

It wasn’t until I worked another shift where I, mid shift, sat down and said to my colleague “I just can’t do this” that I thought enough is enough.

Finishing the shift I went to the hospital and believe or not was turned away. Not initially, we did the song of dance of blood tests and fluids but was sent home and told to rest.

But this, whatever it was, was not going away. This was the worst flare I had ever had in the whole 4 years that I had UC and I knew deep down I needed to be admitted into hospital. I was going to the toilet 15+ times a day, in fairness I can’t really remember because I was so sick. I had no appetite, was bleeding heavily and the fever was still raging.

I went back when things weren’t letting up and they admitted me for an over night stay.

Except the overnight stay turned into about two weeks.

Never a fun time, but I will save that for another post.

What’s the longest you have stayed in hospital? What were the events leading up to your surgery?

Would love to hear from you!

 

 

 

The Method To The Madness

Over the past week I have been asked this question several times
“Why are you running a half marathon if you hate to run”

My response has been “I have no idea”

I took the time out to sit and actually think why am I doing something I really hate? Why could I not have raised money doing something I enjoyed?

I have always been a very active person. In school I would play netball, football, tennis, looked forward to sports days and what with being a hyperactive person, I was always on the move. University came and though I was never on any teams, I was studying acting and so was on a very physical course.

I love to be active.
Colitis slowly stopped me from being as active as I liked. I couldn’t exercise for long periods of time because I was tired constantly. When things were really bad I couldn’t even go for walks for fear of having some sort of accident. (Yes people, I do mean of the pant soiling kind)

When I had my operation, it took me three months to recover and be able to do a few shifts at work, let alone start any exercise.

The moment where I decided to run was after my second operation. It was partly inspiration from a friend of mine, Candice. I had seen her journey unfold, which by the way you should all check out here http://thetortoisewithnohair.com
and read the amazing journey about a girl who is running the world for Avert(ing) HIVand AIDS

And partly because I had been so sick of not being able to move. I wanted to make my body stronger. It had been through much and still had another operation to go. I wanted to take care of it.
I had no money to spare to go swimming or buy any work out dvds so I started to run.
I hated it (as you are all aware from my previous post) but I would get better with every run that I did and I slowly got addicted to the feeling of adrenalin kicking in when I realised I’d beat my PB. Addicted to the might rush of those feel good hormones rushing around my brain, making me love life and anyone I came across! Addicted to the fact that after a good, hard, long run, I would sleep like a baby.

I chose to run for my charity because doing a sky dive or bungy jump is something I really want to do. Its not a challenge for me and therefore not an achievement.
I won’t grow as a person from doing a sky dive, I mean sure I’ll have an awesome memory of it but I intend to do it when I go travelling.
Running is an epic challenge for me, it teaches me things I didn’t know about myself and it will continue to teach me because this mind of mine is going to have to be shown who’s boss at some point.

When I run this race in September I won’t be the same person who is writing this blog. I have a lot of learning to do, a lot of hard graft to get through and some revelations to share.
With this run I know that I will have put my everything into this. Raising awareness for Crohns and Colitis is something that means a lot to me. I want to reach as many people as possible with this fundraising so that those suffering know that they are not alone. Most importantly they don’t have to go through this disease alone.

Sure, I’m a little bit crazy for deciding to do something I hate, where I will spend hours every week clocking up miles, where I will have to most probably cancel dinner dates and catch up sessions in favour of training. But this run will just highlight the fact that I can do anything I set my mind to regardless of what I have been though. I hope that people with IBD can take something away from my journey and feel just a little bit better about their own. I can’t inspire people by just doing a sky dive.
I have to earn the right to be inspirational.

Someone give me a break.

I am not a woe is me kinda gal; I’m a Pick myself up, up and at ’em kinda gal.
Today has pushed me to a limit I did not know I had.
I was this close *puts fingers together so they are almost touching* to having a mental break down. To going to the nearest bar, getting so smashed off my face that I couldn’t see. To going back home to bed, flippin’ the middle finger to the world and not emerging for a very long time.

Today I was told that I have a cyst on my ovary. That they usually go away by themselves but mine is so big I require surgery to remove it.
Yes.
You have read that correctly.
Another surgery.

It can be removed laparoscopically (key hole) or by opening up a small area by my pubic bone. My cyst is so large that its looking to be the second option. There is the choice of going key hole and draining the cyst but my dear cyst has built chambers within it so it can’t be drained.

When my gynecologyst told me I would most probably have to have surgery I laughed. She said she was sorry and couldn’t believe I was taking the news so well.
What else could I have done?
Burst into tears and say “why me?” No its just not my style.

I won’t lie to you all, I am very upset about this. If we’re going on the basis of karma, I have done nothing wrong to deserve this constant stream of shit.
If its fate and my life is mapped out before me and I am meant to be going through this to somehow achieve something, I’d rather sit this one out thanks. Unless the trials are to be superwoman or some sort of bionic lady, its not worth it.
Four surgeries in under two years.

As this surgery is not laparascopic it means I will have increased recovery time. In relation to my running it means I will have to sit out 12 weeks.
3 months.
How am I meant to train for a 10k if I can’t train for 3 months?

All day my mind was a mess. How do I pick myself up after this? How am I meant to do what I usually do, give myself a pep talk and battle on through when all I keep thinking is why? What have I done to deserve this?
All I wanted from life was to go to uni, get a degree, go travelling and then get an acting job. I love to act, its my passion and I wanted to do something that I loved. I wanted to settle down with someone I loved and just earn a living doing something I enjoyed.
Why is it that so many people go through life with the things that they want just landing in their lap with no complications?

Today I had a choice. I could break down or I could pick myself up and I could get on with it.
And without realising, I had already picked myself up and got on with it. How? Because I laughed when the Dr told me I had to have surgery. I didn’t cry, I didn’t go silent I just laughed and said “wow” and asked some questions.

As much as I want to sit cry and eat a crap load of ice cream (which by the way I can’t do because my pouch will get angry) I know deep down I won’t because its just not me.
I’m starting believe that not everything happens for a reason, but just because it is happening does not mean I can’t do something with it.

My life right now is totally messed. My health is in tatters and I’m a teensy bit scared that I might not have a job at the end of it. I am after all still on probation and 4 hospital appointments in the space of two weeks with an impending surgery, would you still want me on your books?

But fuck it man. This is happening and I have no means to control it so I might as well make the best out of a bad situation. I have amazing friends and family, I have a wonderful boyfriend who has supported me through some seriously bad times.

In relation to my running journey, sure I may not be able to run it completely, I may have to walk the majority, but I will make sure I will be in that race.
You will see me cross that finish line with a smile on my face, because even though I have had the worst luck, and a whole heap of shit thrown in my face, I have set my mind on achieving something and I will see it through to the end. I am not a quitter. I am a fighter and I’ve always said I won’t let colitis beat me so why would I let something as small as a cyst stop me?