Freaky Friday

Stumbling to the bathroom I am aware of how large my stomach feels despite the fact I have not eaten yet.
Mouth is dry, head feels like cotton wool. Its like a hangover but without the booze or the fun of the previous evening.
I sit on the toilet trying to wake up, realising that I’ve only clocked about 4 hours sleep I yawn sleepily and am disturbed to feel a sharp pain shoot up my left side.
Feeling suddenly awake, I feel a deep spasm and a wave of nausea hit me. Grabbing the side of the radiator, I gingerly stand and breathe deeply until the spasm passes.

Opening my eyes everything’s a tad hazy, and I realise I’m on my back staring at the ceiling. Fab. I’ve passed out.
Slowly getting up I go downstairs and wake up the boy

“Baby, I’m going to the hospital”,

Considering he’s been trying to get me to hospital a good few days before this, I would have thought he would have been a bit more enthusiastic. Instead I am met with a grumble of it being early and that we should go later.

Sighing, I call a taxi and inform work that I will not be making an appearance today.
Waking the boy again, he is disgruntled but happy that I am finally making my way to the hospital.

After the initial wait in a&e, which for once doesn’t take that long, I am asked to put a gown on and pee into a pot.

My pee is decidedly shy when asked to make an appearance and I spend at least 15 minutes trying to coax it out and inevitably pee on my hand. The moment I have excruciatingly filled the pot, I pee like a normal person instead of a dribble, my bladder laughing at me.

I conclude that all my organs hate me.

Abdominal xray and a chat with a doctor who clearly hasn’t a clue what an internal J Pouch is. Once again I feel like I should carry a diagram of what my operation entails and what my insides look like.
More waiting, some sleeping, 2 nurses try to take blood but its not happening, I’m pricked with needles four times and my blood just isn’t playing nice.
Fifth times a charm apparently, but even then they have to wiggle the needle to get the tubes filled.

I get told I’m going to a ward and I start to get upset. I hate staying in hospitals and every time they put me on a ward I end up staying for a prolonged period of time.
“We’re taking you up to page ward”
And I burst into tears.
Weirdly this time last year I was in hospital for a flare of UC and I ended up having an emergency operation.
What ward was I on? Page.
Tears are streaming now and I’m panicking, No ones told me what’s wrong with my pouch and I’m so scared.
The boy manages to calm me down and the nurses are lovely.
Fluids are hooked up and a chest xray is booked.

A surgical doctor sees me, I’m grateful for the understanding.
After examining me the doctor books an ultrasound stating that it might not be the pouch that is causing the initial problem.

After hours of waiting and several scans later I am told the reason for my pain is, the dreaded cyst.
The little sod has grown and brought some friends. I now have a 10mm cyst on my right ovary and 2 4mm cysts on both ovaries.

I am thankfully sent home with some amazing pain killers. These bad boys have me so drugged I’m just smiling at the world and dreaming of bunnies and unicorns.

So. I will now have a load of appointments to a) determine the outcome of the cysts b) sort out my antibiotics for my pouch c) maybe see my old gastro doctor for some help to live without the antibiotics.

Works going to love me, but as my mum and the boy said, my health comes first at the end of the day. I’ve always been really nervous about what work will say as I don’t want to cause a fuss. But hey, its not like I inflicted this upon myself so I’m afraid I’m just going to have to suck it up and get on with it.

I’ve been having days where I am super pissed off at life. I’m barely surviving let alone living, and I’m deeply annoyed at how I just can’t seem to catch a break.

4 months. I have 4 months to put up with it all and then I’m off to Australia. I just really hope my body settles down before then, my insurance is already sky high, the last thing I need is to get to Australia and be sick there too!

Keep your fingers crossed for me guys. I so desperately want to get better!

The Beginning

I have never spoken to people about my journey with Colitis. Burying the horrid details is how I coped. I was dealt a nasty hand and I played the game with what I had.
For me to raise awareness about this disease I need to unearth some horrible events that have happened in my life.
Now it’s not going to be pretty and some of you may feel that I am a) unearthing some horrible details that should remain private; b) that the details are a little too gross for causal reading.
Let’s just get some things straight, for people to understand how devastating this disease is you need to know the gory details.
For other people who suffer with IBD, they need to be aware that there are people out there who are going through some rough times and it’s perfectly okay to feel like your whole world is unravelling at your feet. So yes, these posts will be a little heartfelt and a touch graphic, but if you would prefer not to read, then that is your own choice.
It took me a while to realise something was wrong. First it started with mild cramps and occasional nausea when I ate.
I thought it was down to stress; I had been working on a new project at university and was pulling 12hour days, then going out drinking afterwards.
Then I got this bizarre feeling where I urgently needed the bathroom but then nothing would happen.
Even when I noticed blood in the toilet, I still ignored it.
It wasn’t until I went to the bathroom one day to find the only thing in the toilet was blood that I thought I should get myself checked out.
Low and behold, the only way to check out any problems with your backside is indeed, to check the backside.
April 2008 was the first of many, many rectal examinations. I am now immune to any exams in the below region, though I do believe that I should get a lollipop for my efforts.
After being forwarded to the gastro team, we spoke about what it could be, his suspicions were IBD but we would have to make sure whether it was Crohns or Colitis and the only way to check is a sigmoidoscopy (camera up le bum)
I was coping with everything pretty well, the urgency was getting a little worse but nothing major and I hadn’t lost too much weight.
The bleeding however was getting worse and I was feeling very exhausted.
One afternoon after a particularly troublesome day I found I was passing huge clots of blood, like 50pence pieces and bleeding very heavily. Confused as to what was happening, I walked to the sofa and curled up into a ball. Having no one to rely on at university I was feeling very scared at this point.
I called my mum and she told me to go to a&e, tears streaming down my face I said I didn’t want to go without her. Being a relatively healthy child/teenager I’d only gone to the hospital a handful of times and even then it was with the support of my mum by my side.
My housemate took me and I was so grateful, she sat with me the whole time and even came with me when I had my examination.
First housemate to see a little bit more of me than she intended and on a completely sober basis as well.
I never really said thank you to her properly. It was a small gesture but to me a great one. I have no idea how I would be able to cope if I was by myself.
The Dr had his suspicions that it was Colitis and sent me away with a cocktail of medications. Steroids, pills to help cramps, tablets to help the acid imbalance, Mesalazine to help reduce inflammation. I was on, if memory serves me correctly, 24-28 tablets a day in my early stages.
This all happened before I was properly diagnosed; I will share with you the lovely details of my first sigmoidoscopy in another post.
I still hadn’t told many people what was going on, especially as I didn’t think it was a major deal. Something that I would have and perhaps go away with time.
I didn’t realise that the only way to cure colitis is to take the large intestine out. I was still quite naïve in my thinking, as you are at that age, believing that you are invincible.
I used to take my health for granted, something you think you will always have.
April 2008 was the beginning of a long journey, nearly 4 years on and I am still trying to get onto a path that will lead me back to a pain and med-free state of health.

Yawn

I am just so tired right now.
Why?
I am not sure.
Since I’ve started training all I want to do is sleep.
I’ve been running in the mornings which is making me seriously sleepy for work. I nap in the afternoons, emerging from the staff room angry that I am awake, sporting crazy hair and a beautiful couch mark across my cheek.
At first I put it down to my body not being used to running regularly but after my epic 6.5km I took a little break because my body was clearly like wtf? and I am still completely exhausted.
Today, for example, I slept 13 hours, albeit I did get up 4 times (irritable pouch) and I woke up feeling like I had  less than 6 hours sleep.
I am seriously lacking energy.

I have been off antibiotics for over a week now and surprise surprise my pouch is throwing a tantrum. The diet is hard to stick to but I am sure with my consultation in a few weeks it will get easier.

Irritable pouch. What is it? I am hearing a few of you ask, well it means I visit the sacred place (bathroom) perhaps 6-10 times a day and once at night if I’m lucky.
Food tends to go straight through me and I get intense spasms and cramps.

The frequency is not so much an issue,  I can handle going to the bathroom a lot, its the cramps I can’t take. Its the sort of stop-in-your-tracks-and-stay-completely-still-so-your-intestines-don’t-burst-out-of-your-body kind of cramps.

I have found that the more exercise I do, the less cramps I have. I haven’t a clue why!
I’m slowly figuring out what my pouch likes and what it doesn’t. Onions and crisps are on the Me No Likey list.

Anyway, I just thought I’d give a quick update as I’ve been quiet for a few days.
I’ll keep you all posted on whether this tiredness lets up.