OK – I have written this page a while ago but thought I would leave it as it is for the moment, to give you an idea on what it was like to live with UC everyday.
I guess it all started 7 years ago when I got a bad dose of flu one christmas. For 2 weeks I couldn’t eat a thing and was off work with it. Over the past few years I had what the doctors called IBS attacks, the flu had made my bowls weak, ie what ever I did or was planning to do – I got diarrhoea.
Then on Christmas Eve 2001, I had a bad IBS attack while shopping for my mum. I took a couple of diacalms and carried on. Took care on Christmas Day and Boxing Day but I kept on going to the loo. I didn’t feel to bad but did get alot of pain by my belly button every time I went to the loo and then it started!!!
Every time I went to the loo I was getting blood and mucus coming out all the time, then I started – as my mother called it “Bog Hopping”. When I returned to Edinburgh I was dragged to the doctors kicking and screaming by Steven, my partner at the time. The doctor had a poke and prod and told my it might be tummy infection and to return with a sample.
New Years Eve I went back to the doctor with a sample and had to wait a week for the results, which came back as negative. The doctor told me there was nothing more he could do as he didn’t know what was wrong with me. I couldn’t have any medication and he was going to refer me to the hospital.
I had to wait 6 week to get seen by the doctors at the Western General Hospital – by this time I was very ill, could hardly walk 10 yards with out needing the loo. I had lost 2 stones in weight and couldn’t eat a thing with out wanting to throw up.
Every time I went to the loo, I had to put a towel in my mouth as I had to scream due to the pain. I was going every 10 to 20 minutes all of the day and all of the night. I was also sharing a flat and in some case I had to use a bucket because I couldn’t get into the bathroom due to my other flat mates.
I saw Dr Watts on Feb 14th 2002 – ahh Valentines Day and he did a sigmondscopythingy – basically a metal tube with a sight up my bum so they can have a look at what was going on. I must admit it didn’t hurt but was uncomfortable. Steven was sat on the other side of the curtain and could hear my crying – i was saying sorry to the nurse for this and that it was because I had never been through anything like this before. Dr Watts tried to make light of it all and went to see steven – he twanged his rubber glove and said “if she’s got to go through this so do you – have to compare them you see?” Steven went white but I burst out laughing – what a sicko I am!!!
Dr Watts wanted to admit me into hospital there and then but I refused – was completely out of my tree with nerves. Dr Watts told me I had IBD and a condition called Ulcerative Colitis – I had never heard of it! He told me there was no cure apart from surgery but they would try me on medication first – because that usually works. I cried my eyes out and a lovely nurse sat with me and calmed me down.
Dr Watts arranged a Colonosocopy in 3 days time – I returned early morning and said good bye to Steven – I started crying again as I really didn’t want to go through this on my own.
I was told I was going to be put asleep and wouldn’t feel a thing – oh how wrong they were!!! I had my colon cleaned out and I sat waiting for me to go in and be put asleep – I waited and waited. Finally it was my turn and was wheeled in on a bed – only to be told there was no recovery beds and was I willing to have it done AWAKE! If you don’t know what a colonsocopy is – it is a camera tube up your bum and it shows in more detail the colon and any damage. They took me in and I did my yoga breathing to try and relax as much as possible – Dr Watts came in to check on me and thought I was asleep – he jumped 6 foot in the air when I lifted my head and said Hi then went back to my breathing.
I never cried – and they even took biops to check the layers of the colon. Yes it did hurt and it is something I never want to go through again. The Dr confirmed it was UC and I got a prescription there and then for steriods and predfoam with some asacol on top. I remember returning to see Steven walking like a cowboy and telling him I had to do it all awake. He was so shocked I went through it – but I had too.
After 2 weeks of taking the medication I began to return to university, major shock for everyone there as they thought I wasn’t going to return. After 3 months of hard work to catch up with my assesments and exams I passed my first year and started getting ready for my second.
On July 16th 2002 I had another Colonsocopy, and this time it was even more entertaining. I had to take cleanprep – a salt mix to clean your bowels out – not very nice at all. Made worse when you share a flat and your flat mates have to take a shower – along came the bucket again!!!! The best was trying to get to the hospital after taking 2 liters of cleanprep – taxi! Thankfully the lady taxi driver had crohns and knew my situation – drove hell bent to the hospital as it was the same one as she went too and knew a quick way there – bless her.
I had to wait an hour in the waiting room in my lovely gown and got chatting to a old woman – she was going the usual “this hurt, that hurt” and I listened to her – then she asked me what I was in for so I told her. She felt bad that someone so young had to go through all this – I told her people younger than me had to go through it and for me there are people worse off than myself. I remember her touching my face and wishing me luck – it was so nice of her.
I was given a bed and wheeled in to the theatre – I was chatting to Dr Watts who was doing the colonsocopy. One of the nurses called through and asked what CD he wanted on so he asked me what I was into. We had a 5 minute conversation all about types of music I was into and what CD’s they had there. I was finally put asleep but half way through the colonsocopy I woke up – all I remember is looking at the TV screen and asking them to turn it over – then I fell asleep again.
Since I started the medication I have never been in remission and never been off the medication. I have been on a special diet to try and help me recover – but I am still bleeding and having problems with the 5 sec rush.
Over the past 2 years I have had to battle with the UC and have tried everything to get me better. I have had fights with Drs and have never cried so much in my life. Some people have said to me that I’m not that ill and just doing it for attention but let me tell you something.
Why would I go through people sticking fingers, metal tubes and cameras up my bum for attention, try it yourself sometime, believe me it’s not nice.
I have to pay for my mediacation which costs £40 a month, why would I waste that amount of money?
Had to catch up on 7 weeks worth of course work from universtiy to be able to finish at the same time as everyone else, which meant I didn’t leave the house and even kicked out my friends so I could study, why would I do that?
Why joined a mentor scheme for extra help to catch up which ment going to uni on a Saturday or Sunday?
I had to poo in a bucket like a child and I pooed myself all the time – do you think that was fun for me?
I have spent year 2 at uni in complete pain – going up and down on medication and had to fight narrow minded people who think that having a wee bowel problem shouldn’t interfer with her work. I have to prove I am ill and have the condition!!
So what’s happening to me know? I am hoping to have an operation in the next 2 months and getting my whole Colon removed – YEAAHHH!!!
My surgeon is Prof Dunlop and he is wanting to create a J Pouch for me – a internel pouch that will collect the waste and I will go to the loo as normal to empty it – instead of an ileostomy – an external pouch.
I am looking forward to it now as I can’t take anymore of this illness – fair play to those who live for years with this condition and crohns and never have an operation.
I’ll let you know how I get on!
Love ya – Mooks