The big one

Yesterday was my biggest and best day at the hospital so far. After being off steroids for a week and feeling better than I have in a long time I couldn't wait to go and see my gastro nurse to find out what the next step for me was. Before seeing Deborah I was weighed (I've lost weight!) and measured (I've grown an inch!) and then we went to her office to talk about how I've been recently. My previous blood test showed that my bloods were normal, however Tuesdays showed some inflammation but this is normal for someone who has just come off steroids. I don't really have any symptoms at the moment and the good news is I have been taken off all my medication except Azathioprine and Humira isn't on the cards for me yet!

The other great news is that Deborah agreed I can go interrailing so we booked our tickets and are going on June 5th! I can't believe it is actually happening!

Clinic

On Wednesday I had a check up at the clinic with my specialist nurse and I am very pleased with the outcome! I've felt good the last couple of weeks and was surprised how well I felt in cologne and afterwards when I thought I would be tired. My energy levels are much more constant and I haven't been having the painful cramps. My bloods are good and show that I'm doing well although my white blood cell count is still high which means the Azathioprine hasn't fully kicked in yet. However I am apparently a good match for the drug so it shouldn't be long before I start to see even better results. I was hoping to come off the steroids as I can't stop eating and my face is abit more moon like than it is normally but I will still be on a high dose for another 2 weeks and then a reducing dose after that. This is to give the Azathioprine a chance to work so I'm still on some medication. The next time I will be in the clinic is the week after my birthday which gives me a month to really settle into university and see how I feel with the work load. I am so glad to have a break from weekly blood tests but it does seem like as soon as I have said i'm well i start to go downhill again! I have felt a little bit run down today and I have a metallic taste in my mouth which I think might be a side effect of one of the drugs. However I feel so motivated I don't think this will stop me!

Azathrioprine Week 2

I have just finished my second week of Azathrioprine and finally feel that it might be working. Despite my set back on Sunday where I was very sick I've had a good week. I've noticed that I have much more energy and I haven't had much Crohns related pain. The only problem is the rash that has developed under my arm and on my back and chest. I know it can be a side effect of the medicine and the pros of taking it out weigh the cons but it is very sore and painful at the moment! I also went for my weekly blood test on Friday. I had to wait for an hour in pathology and have ended up with a big bruise and scratch!

A week on Azathioprine...

It has been just over a week since I started my new medication Azathioprine and honestly I'm not sure if I can see any difference. This medication can take 8-16 weeks to start working so I will have to give it time but its so frustrating! I have noticed that some of my hair is falling out more than usual, this might just be something random but I'm going to keep an eye on it as it is one of the rarer side effects of the drug. Luckily the information I was given says that this could be reversible. 
Today I had my first of the weekly blood tests, these have just become routine now but sometimes I am still shocked by how much they take, it seems like such a lot! The reason for the weekly tests is to check my liver and kidney functions and also my general blood count. This will show if there are any problems and also if the medication is working. There was no one in the Pathology department at the Lister Hospital so we walked right in and a nurse came and took us straight into a room where it was over really quickly (I even had a pink chair!) The nurse let mum take a couple of pictures which I thought might help someone who was scared about getting a blood test. The main problem for me was that I couldn't picture what to expect, so this is what I look like getting my blood taken! 

Not very attractive at 8am with a needle in my arm! 

Azathioprine and Prednisolone

This week I had my first post-hospital check up with my Doctor. I first saw the nurse who took my weight (I've finally managed to put on some!) and my height (I've grown 1/4 inch, i'm now a massive 5"2 1/4! I then saw a specialist Crohns nurse who my doctor had asked me to see. She was the most helpful person I have spoke to so far and gave me so much information. The blood test from a couple of days before showed I still had high inflammation and low protein. I have come off the steroids I was on as my symptoms had got worse and she suggested the dosage wasn't high enough so I have been put on another 6 week course which decreases my one tablet each week, this is called Prednisolone. I have also been put on Azathioprine which is an immunosuppressant to stop the cells in my immune system attacking my body and causing inflammation. These can take up to 6 weeks to start making a difference so as the steroids decrease these should kick in and start to work. 2/3 people are fine on this but the other third can suffer from side effects such as flu symptoms and joint pain which I need to be aware of. It also says a 'very common' side effect is anorexia which I cant understand! I will need to have blood tests weekly to check my liver function  and anaemia which start this Friday. I also had several questions to ask which she answered fully such as Can I give blood? Nope, I need it! Can I take paracetamol and codeine? Yes, anything but ibuprofen is fine. Can I drink alcohol? Yes, in moderation. My original doctor came in to visit during the appointment and said some words that have really helped. He said its up to me now I really need to own it and if I want to be better they will do everything they can to help like giving me the medication I need but its up to me to take it and look after myself and focus on getting better. It has made me realise that this needs to be priority now and everything else like University and other things can wait. He said that if the medicine starts to work I should be able to go back but if they don't then I wont be able to go on the Cologne trip so fingers crossed!

Crohns

I wasn't sure about whether to write about Crohns or not, partly because it hasn't really sunk in yet and partly because I actually don't know that much information about it. It was two weeks yesterday since I came out of hospital- my first proper time in there (very scary!) but my problems started around 6 months ago. I'd just moved into my new uni house, got a new job and was very happy with how everything was going. I don't think I was stressed but looking back I probably was. This was when I started having 'issues' but I ignored them for a few months. I went to the doctors at home and he told me I would need a blood test but at the time I was so scared of needles I didn't want to get it done. SO stupid! If anyone else is in that situation then seriously don't wait, I cant believe i've been dealing with it for such a long time. 
Then the pain in my stomach started and I became really tired all the time. I started uni again and eventually it became too much so I went back to the doctors in Coventry and he was so helpful. He felt my stomach and asked me lots more questions and I was sent away for samples and a blood test which I did! That was a proud moment and now I don't know what I was worried about. The results came back and showed there was inflammation and my doctor referred me to the hospital to have more tests. The only problem was the appointment wasn't until December 5th - 6 weeks away! I carried on for another week but started being sick a lot, I weighed myself and I had lost a stone in about 3 weeks. One weekend I couldn't keep any food down so I went back to the doctors where I saw yet another doctor. He told me to get another blood test to see any changes and tried to bring my appointment at the hospital forward. The next day I got a phone call from him saying I needed to be admitted to hospital straight away, the inflammation had got worse ( I think?) and I was now anaemic from my lack of food. The thought of being in a hospital in Coventry on my own terrified me so I went home the next day and then on the Friday morning mum took me to hospital.  
In hospital I had a colonoscopy (very weird!) and they diagnosed me with crohns and I was put on steroids to bring down the inflammation. There were blood tests every day and early mornings for medicine. I had a cannula which was scary to look at but meant that the injections could go in there. Apart from the one for blood clots which was horrible until they told me to put it in the leg then it was fine! I couldn't wait to get out of there and since i've been home i've felt so much better. I still take the steroids and I will be back in the hospital soon for another MRI scan and a further colonoscopy. The thought that I have something now that cant be cured is scary and I don't really know whats going to happen in the future but at the moment I feel great and cant wait to get back to normal!