Sunday, 30 November 2014

My Story: Part 2

On Friday I was still in hospital and they still didn't know what was wrong with me. They sent me down for a CT scan. I've never had a CT scan before so didn't know what to expect. When they took me down it was so funny. They had me in a wheelchair and sat me in the waiting area which was 3 rows of mainly empty wheelchairs. There were a bunch of us sitting there in our wheelchairs watching tv. Most of the other people were considerably older than me and I found the whole thing so funny, it was like I was sitting in an abandoned wheelchair graveyard or a car park. I looked at the lady next to me and nearly started to laugh, but she didn't seem to think that sitting there in our wheelchairs was as funny as I did.
 

Then they took me in to have the CT scan. They put the fluid into my drip and told me that I'd feel warm all over. Well they lied. I only felt warm around my groin so I was thinking that I'd wee'd myself. I wasn't allowed to move, so I couldn't check if I had wee'd myself or not. The whole time I was having the test I was thinking, 'surely I haven't wee'd myself, how could I wee myself, I'm not that sick.' I've since found out from other people who've had a CT scan that they got the same feeling. When the test was over, the first thing I did when I sat up was to sneakily check my pants to see if I'd wet myself and was so glad when I realised that I hadn't.
 

About an hour after I'd had the CT scan the Registrar arrived and told me that the test showed some inflammation and fluid on the right side of my small bowel and that he'd be getting a gastroenterologist to check my results. So now I had 3 Dr's (surgeon, registrar and gastroenterologist). The gastro Dr looked at my results and then came to speak to me. He said that I probably had either Crohn's disease or Ulcerative Colitis but he'd do further tests to find out for sure. I'd never heard of either of them so the nurses printed off some information for me. He told me that I'd have a colonoscopy and endoscopy on Monday so that we could get a definitive diagnosis.
 

On the Saturday morning they took my drip out and the Registrar told me that I could go out during the day if I wanted to. He also said that I wasn't sick and it was time for me to stop sitting in bed and 'get up and at em'. I just looked at him when he said that cause I certainly didn't feel good, I was in agony with my stomach and couldn't even stand up straight. But, I took his advice and tried getting up. Looking back I realise what a f@#cking idiot he was. I wasn't just sick, I was gravely ill so telling me to get up and at em was stupid. And impossible.
 

Being allowed out for the day was like being in prison and being allowed out on day release. I could go out after I'd had my morning medication and had to be back by 6pm. They gave me my days medication in a wee sample pot with instructions when to take it. They also said that I could have clear fluids, which was nice cause it meant that I could drink. I could also have clear soup (which didn't taste very good) and jelly, which I hate. Since I didn't really like either of those things I was sticking with water and a little bit of juice.
 

As strange as it may sound, at this stage I still hadn't realised how sick I was. Tiger came and picked me up in the morning and we headed to the shopping centre. He wanted to get lunch (he has a thing about eating out, but I'll talk about that another time, this story is about me), so we went to the little Asian shop and he got some soup. As I was on clear fluids only I couldn't eat, but I did have some of the fluid from his soup, which tasted amazing. It had so much flavour, a lot more flavour than the stuff I'd been having in hospital.
 

After he'd eaten I was in too much pain and too exhausted to do anything so we went home. I couldn't stand up straight due to the constant pain (agony) in my stomach and was too weak to walk far so I shuffled around like a 90 year old. We went home, I lay on the couch and slept for 3 hours. I was so disappointed, I'd been in hospital on my own all week and all I wanted to do was see people, but I was too sick to do anything. When I woke up we went back to hospital. I was pretty upset, I'd had enough of being sick, I was sick of being in hospital and I just wanted to go home.
 

They said that I could go out again on Sunday but I didn't bother, it was too much effort.

I was due to have the colonoscopy and endoscopy on Monday morning so had to start the preparation on Sunday afternoon. The gastro Dr said that I could probably go home on the Wednesday because by then we'd have the results of the colonoscopy and endoscopy.

Sunday afternoon I started drinking the preparation for the tests. If any of you have had those tests, you'll know how horrible the prep can be. For some reason I have an extreme reaction to the prep and spend at least 8 hours on the toilet with fluid pouring out both ends. Thankfully I had Tiger there looking after me. He's pretty good at looking after me when he puts the effort in. It was really nice to have him there, I needed him, but I also felt bad that he was spending all his time at the hospital. 


Anyhow, I started drinking the prep, it gave me the runs and made me really sick. I was struggling with it but trying my best. By this time though, I'd had enough. They were sticking needles into me and doing all sorts of tests and I couldn't cope with it any longer. I felt like my body had betrayed me and it didn't belong to me anymore, it was just this thing that they kept on sticking needles in. I was sitting there with tears running down my face, trying to drink the prep (which tastes awful). I wasn't even crying properly, cause that took too much effort and I just didn't have the energy. There I was leaning against Tiger with tears running down my face when the nurse came in. All of the nurses were lovely. She took one look at me, realised I'd had enough and told me I didn't have to drink any more of the prep. Thank goodness for that, cause I don't think I could have. Why I even needed the prep when I'd been on clear fluids for four days I don't know.

I've since learned that there's another prep that you can take that is much milder than the one they gave me, but they don't give it to you unless you ask for it. Why they put people through the horrible prep I'll never understand. Probably because the nicer test is more expensive. Or maybe the Dr's who arrange the prep have never done it themselves.

I started to feel better once I wasn't drinking the prep stuff but I wasn't feeling very good. Just after Tiger went home that night they came in to take my stats and had a huge panic when they realised that my blood sugar levels had dropped really low. They should have been around 8 and they were under 3 which explained why I was feeling so bad. They called a Dr in from home, she was there within 15 minutes and everyone was racing around panicking. They put the drip back in, gave me lemonade and apple juice and started giving me glucose in my drip. After about 1/2 an hour I started to feel a lot better. The next morning (Monday), I went in and had the colonoscopy and endoscopy. They both went fine (because I was asleep, hehe).

On 2 July 2007 I was diagnosed with Crohn's disease. When the tests were over and I was back in my room the gastro Dr came and told me that I had Crohn's disease. He explained to me that I had Crohn's in my small bowel and that Crohn's disease is an autoimmune disease where the immune system attacks the bowel and causes inflammation, which is why I was in pain. He told me about the medications that I'd need to take and made an appointment for me to see him in a few weeks.

Being diagnosed with an illness you've never heard of is pretty scary. Not as scary as it would have been if I'd had a full understanding of what Crohn's disease actually was, so it's probably a blessing that I didn't understand the full implications of my diagnosis.

After that I was allowed to eat whatever I wanted to. Tuesday morning the gastro Dr came to see me and told me that I could go home. The day I went home I was 52kg's.

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