Hospital appointment

Today has definitely been the most disappointing hospital appointment so far. I went in there expecting to be finally off steroids and say bye bye to the moonface for good. But no, because of the last couple of days of not feeling my best and my blood tests still showing inflammation my doctor thinks I may be about to have a mini flare and has decided it's safer to keep me on steroids for anther month and then reduce the dose. So I am now back up to 4 tablets a day after weaning myself off then over the last few weeks. The azathioprine I'm on has also been increased as I have once again gained more weight. Not good! I know it is all to help me and I'm very lucky that I am reacting quite well to these tablets instead of going onto something else but it's so frustrating when you expect one outcome but it's completely different to what actually happens. Over the next few weeks I am expecting lots of lovely side effects so no doubt they will be posted on my blog. Brace yourselves!

Big bag of drugs

It has been awhile since I spoke about what medicine I am actually on and as it has changed I thought I would do a quick update about what I take now. Every day I take 11 tablets which I keep in a bright striped make up bag so I always see it and don't forget (I have only ever been close to forgetting once!) I take these every morning after my breakfast. My other tablets used to have to be taken an hour before so I'm glad I changed over! These are what I take and what they do...

Omeprazole: The red and white capsule, this is for acid reflux

Adcal: The big white ones: these are for calcium and vitamin D

B vitamins: Slightly yellow tablets: this is something I choose to take to help stop tiredness

Azathioprine: 2 cream tablets: an immunosuppressant to stop my body attacking itself

Prednisolone: 4 white tablets: a steroid used to reduce inflammation

Rigevidon: 1 white tablet: this is my contraceptive pill!

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!

Hurdles

Today has been very exhausting, the morning was spent in the hospital at my appointment to see Dr Kahn my gastroenterologist and the rest of the day was spent shopping, spending time with my cousin and packing for cologne. To make things easier I will split these up into separate posts!

The meeting with Dr Kahn was overall quite positive, he started by asking if there was anything I was confused about and I told him I still wasn't completely clear about where my crohns was. He explained that the large and the small bowel are the most commonly affected, the small bowel is named that because it is very thin. This is the part that confused me as it is much longer than the large bowel! He told me my inflammation is all the way round the large bowel and then a small part into the small bowel - normal for someone with crohns. This was reassuring and didn't feel patronising at all which is what I like about him! He also said that despite the shingles, which caused a break in my taking of azathioprine, my blood tests were showing an improvement on inflammation! This means the steroids were still working (I love the way doctors say steroids, like stiroids). However he has upped the dosage again to 4 tablets a day for the next two weeks. Ideally I would like to come off steroids soon but hopefully this big hit of them will mean that I can.

He also explained about surgery in the future and that he would do everything he could to prevent me from having it and explained the next options if the steroids don't work. These come in the form of injections which I have heard some negative things about from other crohns patients so I'm hoping I can stay away from those! The next hurdle is going back to university and fitting in appointments at home with my work. I already face this in the next two weeks where I start university but have a hospital appointment an hour and a half away the next day! These are things to work out as I go along but I hope that it will settle down eventually.

Shingles update

This week I have neglected my blog a little bit (and myself if I'm honest). I came back to university on Friday night and it's been difficult to settle in whilst at the same time testing how far I can push myself. Having shingles on top of that and being taken off azathioprine has not made it easy! I have finished the tablets and the rash is definitely healing but now it is the most painful as some of the scabs come off and there's fresh skin underneath (disgusting I know). Through out this week I have tried a few methods pain relief to get through the night as its been difficult to sleep. Some of these worked great, some a little too well and some I didn't feel the affect of at all. That is another blog post completely and one I probably won't share for awhile! I have also noticed this week that my emotions have been all over the place. Clearly my body is getting used to being pumped full of drugs and then having them taken away has shocked it. There is information online about chronic pain and shingles being linked to depression, although I don't think it's going to get that far I can tell that I'm not myself. I am looking forward to starting the azathioprine again tomorrow as I could feel it working and it might help balance me out again! I am hoping that having the 10k run to focus on will level me out and keep me from feeling too down.

Bye Azathioprine!

Anything I said in yesterdays post about not having any pain I take back! Last night was a horrible experience. The pain all over my chest and shoulders meant I couldn't sleep, it was like someone pricking my skin constantly and then putting salt on it. It got to about 4am and I decided enough was enough, took 2 paracetamol and codeine tablets and was knocked out for the rest of the night! Today I decided to go into town and stock up on B vitamins which are meant to be good for Crohns and the immune system and also some calamine to sooth the rash. I hope it will go as soon as possible with these and the medication! My doctor has decided to take me off the Azathioprine for the week while I am on the other tablets. He didn't explain why but I have seen a lot of things online about the risks for people will low immune systems and shingles. I hope it will give my body a chance to fight back a bit better! 

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!

Side effects of Azathioprine?

Today has been one of the worst days in a long time! It started off fine, I took my medication with breakfast like normal and decided to go to the car boot sale with some of the girls despite having a bit of a stomach ache. Walking round I started to feel a bit sick and the pain in my stomach was getting worse.  As we headed back to the car we stopped to get a bottle of water but I couldn't even stand in the shop I had to walk round the corner down an alleyway where there was a bin and throw up. Not one of my best moments (didn't even have the excuse of being hungover!) but at least it was outside M&S so I could maintain some class! I managed to get home thanks to my friend driving me back and have spent the rest of the day in bed being sick and having a massive tummy ache. There is no point in paracetamol or other pain relief as I would just sick it up so all I can do is ride it out with my hot water bottle!
The hospital recommended I go straight to A&E and be transferred to the gastro ward where they had a bed waiting for me but the thought of spending New Years in hospital is horrible. If this feeling is because of the medication then I know I should go, but if it is just a bug then going to the hospital will make it worse for me and everyone else on the ward. Has anyone else had side effects like this on Azathioprine? Very confusing! 

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!