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! 

Crohns and Weight

When I first started getting the symptoms of Crohns I did what any normal person would do - I went straight online to find out what was wrong with me. As well as diagnosing myself with everything from food poisoning to cancer I kept seeing the word Crohns and something was telling me that was it, that was what was causing all the symptoms I had. The only problem was I wasn't suffering from ALL the main symptoms of Crohns yet, I hadn't lost any weight. In fact I had been slowly gaining weight at Uni and work over the summer and being too tired to do anything but eat and sleep. Honestly I had got a little bit fat and could probably have done with losing a few pounds, but when you are too tired to exercise and being told to try not eating this or eating more of that its hard to keep an eye on things.

When it was time to finally go and see a doctor they asked if I had lost weight and were surprised that I actually hadn't considering how long I had the symptoms for. That was until I started the codeine and managed to lose a stone in a few weeks. 

Sometimes I think its wrong to think this way, but losing that weight has made this much easier, although I still sometimes look a bit unwell I'm happier now with my weight than I have been for a long time. If I had been diagnosed with Crohns and put on a stone it would have been a whole different story, I doubt I would have been up and out of the house as quickly which is why i'm eager not to put the weight back on and make my life a little bit more unpleasant!

There are several reasons why this is going to be difficult

1. I am so tired, all the time. For most people going to the gym can be a bit of an effort at the best of times but when your energy peaks and then suddenly dips and random points in the day its hard to pin point a time for exercise. There are times when I can be out and ready to fall asleep right there and then. Plus I cant afford the gym, rip off! 
2. I am so hungry, all the time. Except those rare exceptions where i'm very full or feeling a little bit sick I could eat all day everyday. I blame the steroids! Its not good for my Crohns to eat so much and its something I definitely need to get control of. I'm also going to try not eating after a certain point at night, it sits on my stomach and makes getting to sleep difficult especially if its something that's irritated me.
3. I am on a controlled diet, (most of the time). For some people food makes no difference to their disease but for others it does. With mine I can see the effect some foods have on how my tummy feels, tomatoes, milk, things with a skin all give me a stomach ache. My diet also calls for low fibre which means starchy white food that are known to be too full of carbs and make you bloated if you don't burn them off. Its a vicious cycle! 

Over the next month or so I'm going to try and get myself into a good routine and maintain the healthy weight that i'm at now. Its going to be a challenge with Uni but worth it. What are your tips for staying a good weight with Crohns? 

Crohns from a Mum's Perspective

I recently asked both my parents what they thought when they were told I had Crohns, this is what my mum had to say...

Hannah and Crohn’s from a mum’s perspective

My daughter Hannah has recently been diagnosed with Crohn’s Disease.  She is 19 years of age and in her second year at Coventry University studying Event Management. 

 She is my eldest child, I also have an 18 year old son who is hoping to go to Uni next year.  Both of my children have sailed through their childhood years with only the usual minor ailments – coughs, colds etc. 

Hannah completed her first year at uni with flying colours, she was happy, healthy and very pleased to have secured a house to live in for herself and 4 friends for their second year at uni.  It was at about this time that she was getting quite bad stomach pains and was duly put on Codeine to control the pain, blood tests were taken which confirmed an inflamed bowel and a hospital appointment came through for December.  After suffering severe sickness one weekend a couple of weeks later she rang me and I advised her to go back to her GP straightaway who took more blood tests, she was now anaemic and had lost a stone in weight.  I felt helpless that she was in Coventry and I was in Bedfordshire, it’s awful to have your daughter crying on the phone to you when normally she is bright and cheerful.  Her GP advised her to attend A&E in Coventry without delay.  Hannah rang me and we took the decision for her to come home and the next day we went to A&E at our local hospital in Stevenage, the Lister, where I work as a medical secretary. 

We saw 3 doctors that day and eventually Hannah was admitted to the ward with a provisional diagnosis of Crohn’s Disease.  It was almost a relief for Hannah to have confirmed what she already suspected, having read up on Crohn’s on the internet, she was displaying the 4 main symptoms.  I had also read up on the disease but somehow I couldn’t get my head around the fact that my normally healthy daughter might actually have quite a debilitating condition. 

Hannah was admitted at 1 am in the morning having been in A&E since just after 9 am the day before, I was almost beside myself with tiredness, exhaustion and worry but Hannah remained calm and cheerful throughout it all knowing that finally she was in the right place and her treatment had started with a saline drip and steroids. 

Myself, Darren and Elliot spent most of that weekend at Hannah’s bedside (in shifts) staying with her for as long as we could.  She was having regular blood tests, intravenous drips, injections for pain relief etc.  She was also taken off her beloved Codeine and the pain was almost unbearable, Paracetamol giving some relief.  It’s not nice to see your daughter suffering in such a way.  The staff on the ward were all marvelous and the weekend passed in a blur of hospital visits, I didn’t really have time to sit down and take in all the implications. 

 Although I did not get to speak to the doctors on the ward, Hannah was kept informed of progress.  She was taken for a colonoscopy the first morning on the ward which confirmed Crohn’s.  As she is 19 she is classed as an adult and so the staff spoke directly to Hannah rather than through us.  At times it was difficult for me to hold back my emotion when you see your daughter in obvious pain.  I was just glad I was there for her to hold her hand, stroke her hair, read to her and keep her spirits up. 

I settled into a routine of popping in to see Hannah before work, at lunchtimes and then after work.  I have been working at the Lister for almost a year, I think Hannah felt comforted by the thought that I was just across the car park and it certainly made visiting so much easier.  My nephew Matt is also a porter at the Lister and he was brilliant popping in to see Hannah whenever he could and making her laugh.

Each day she was improving.  Finally after 5 days Hannah was allowed to come home and Matt wheeled her out in a wheelchair.  Armed with an array of literature and tablets Hannah was just pleased to be home and started her daily concoction of medication.  An MRI Scan and second colonoscopy were booked followed by a follow up appointment in Clinic F. 

We have all had to get used to Hannah being at home on a full time basis and it has been quite a challenge to cook food that is nutritious but which doesn’t give her a flare up.  Hannah has done a lot of research on the internet but I think it was most helpful when we met with the Speciality Nurse in the Clinic who basically went through everything with Hannah.  Dr Khan, Hannah’s consultant, also popped in to say hello and very kindly but firmly told her that she had to own the disease, they could give her the medication but the more she did to help herself and keep a positive attitude, then there was no reason why she should not resume a normal life and go back to uni in the New Year.  Deborah the nurse also gave her a card with contact details and she knows she can contact her at any time if she has a problem.  Her medication has been changed and she is having weekly blood tests. 

Hannah has started a blog, it’s something she can channel her thoughts into and hopefully give advice and help to fellow sufferers.  It seems to be creating a lot of interest and it is lovely to see Hannah with her old spark back.

It’s been a huge learning curve for us all but I am so proud of the way Hannah has dealt with it all.  Our lives will never be the same again but if anyone was going to get Crohn’s then it may as well be Hannah as she has the strength and courage to deal with it in the best way possible. 

It has been amazing the number of people I have spoken to who know of someone who has Crohn’s.  It is far more common than we had realised.  It is also genetic but we have no knowledge of anyone in the immediate family who has suffered with it.  There seems to be a an awful lot of support for the person with the Crohn’s but I, as a parent, have not been offered any support or advice.  I am learning through Hannah how to manage it but sometimes I feel quite inadequate as a mother.  It’s difficult to gauge how much I can do to help or should I simply let Hannah get on with it, after all it’s something she has got to learn to live with.  I can only use my common sense and a mother’s instinct and hope that I get it right.

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!