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!

Contraception

I ummed and ahhed a little bit before writing this post as I wasn't sure how much information is TOO much information when it comes to Crohns and how it affects the rest of my life. I also wouldn't want to embarrass anyone (parents, siblings, *cough* anyone else that is affected by my choice of contraception *cough*) but after doing a little bit of research I think its important.

As Crohns is commonly diagnosed from the ages 15-35 it is a time when women are sexually active and most girls I know have used some form of contraception before that isn't a condom. I have been on the same pill since just before I was 16, it was called microgynon now its changed to rigevidon and I have never had a single problem with it. I'm good with pills, its not often I forget to take it and there have been no side effects at all. I take my packets back to back as I HATE periods, they are a waste of time on the pill and I've read a lot about it being beneficial to keep taking them as it means your hormone levels don't peak and dip as much. It did cross my mind that the pill might not be as effective especially when I was being sick after every meal as surely it wasn't being absorbed but now that i'm not being sick its just the toilet stuff to worry about. If the pill isn't given enough time to absorb it will just go straight through and be less/ineffective. My nurse mentioned this to me at my last appointment and tonight I thought I would look it up.

A few things shocked me when doing some research, the first being a lot of people on the Crohns forums didn't know that the pill is less effective if your using the toilet more. I was made aware of that way before Crohns came into my life which is why it surprised and also worried me. Should there not be a lot more babies wondering around because of that?! The second thing was the research that the contraceptive pill can make you 3 times more likely to develop Crohns if you have been on it for 5 years or more. This was the part that caught my attention as when I first started to get symptoms it was 3 1/2 years since I had started the pill.

'ORAL contraceptives have been associated with the risk of developing Crohn’s disease (CD), while a link between the pill and ulcerative colitis (UC) is confined to people with a history of smoking, according to a US study.

In a prospective cohort study of 232,452 women, 315 cases of CD and 392 cases of UC were recorded. 

Compared to women who never used the pill, current users had nearly a three-fold increased risk, and past users had a 39% increased risk, of CD. A higher but not statistically significant risk of developing UC was also recorded.'

This is a quote from http://www.medicalobserver.com.au/news/oral-contraceptive-pill-linked-to-increased-risk-of-crohns-disease.
Another website I also found interesting was  http://health.usnews.com/health-news/news/articles/2012/05/21/birth-control-pills-hrt-tied-to-digestive-ills

This has really made me consider whether it is time to come off the pill now and find a different form of contraception. Clearly its too late to stop me developing Crohns (if the evidence is right and there is a link) but could it play a part in reducing my symptoms? Its a shame that I found one that worked well for me pre-Crohns but now its another thing that I will have to adjust. I'm hoping that the next option maybe be the injection and that the hormonal side effects of that outweigh the ineffectiveness of the pill!

How do you manage contraception? Had anyone else ever heard of this study?!

My tablets!

Easy Living Magazine Crohns Article (Dec Issue)

Just before Christmas I was given a pile of magazines to flick through including several issues of Easy Living which I don't normally read but turns out might be a new favourite! Naturally I went straight for the December issue to see some of the Christmas stuff before it was too late and it was there that I found this article. 

For some reason the picture wont rotate! When I first saw the word Crohns I was shocked, I did not expect it to be in a magazine like that. Then when I continued to read and saw that it was about pregnancy I was slightly disappointed. I'm very aware of how I write this blog post as I wouldn't want to cause offence and I think anything making people more aware of Crohns can only be a good thing.

However... It doesn't seem like it goes into much detail about how awful Crohns can be. Everyone's disease is different but there is literally no mention of going to the toilet in the article at all?! Maybe she did not have that symptom (she was very lucky then!) or maybe it is because it is in a women's magazine that doesn't want to discuss something like that (I always forget that women who don't have Crohns don't go to the toilet!). Either way I think that's a fairly vital part to miss out and someone who had not been diagnosed yet might not pick up on it. 

There are a few well placed facts about it such as the age range it is normally diagnosed in (15-35) and how it tends to be genetic which are useful but its missed out a lot to focus on the story of the pregnancy. This is understandable the story is written about a journalist but still a let down for those with Crohns who aren't pregnant/thinking about getting pregnant.

I wont ruin it for you if you want to read the article but honestly more could have been written to help someone who has the symptoms but is yet to be diagnosed and it could have had more encouragement to go and see the doctor if you are showing any of them. Have any of you seen it? What did you think?

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.

Top 5 Tuesday

Twitter has follow Friday, Tumblr has topless Tuesday (never quite understood that one) but what does blogger have? I couldn't see anything so every week on a Tuesday I've decided to do a top 5 list relating to that week. Today it's going to be 'Top 5 things to take into hospital' although a lot of people can't plan when they will be admitted I think it helps to know what you want to take in so that someone can get a bag ready for you.

1. Comfy PJ's. One of the worst things about staying in hospital is the gowns and whats even more horrible is seeing the person next to you wearing one without any underwear! I felt much more comfortable in my own clothes and when your getting up a lot to walk around its not as revealing as a backless gown! (you might need to wear one for things like a Colonoscopy as it means the doctors don't have to get through loads of layers) 
2. Entertainment. When I first went into the Lister most of the day was spent with visitors as my family hadn't seen me in awhile because I'd been at uni so they were obviously worried. When I didn't have anyone there and I wasn't asleep it could get boring without anything to do. I would recommend getting some magazines and a good book (I read the hunger games and couldn't wait to get out to see the film!). If you have and iPad or tablet then before you go in get apps like bbc Iplayer and download some programmes you can stream without Internet. Don't forget headphones and your chargers! 
3. Hot water bottle. Being in pain isn't nice but it's even worse when you know you cant have any pain relief for another 2 hours. When that happens one of the best things is a hot water bottle. They can stay warm for ages and really soothe the pain of a stomach cramp as well as keeping you warm if the hospital is a bit chilly!
4. Toiletries. Visiting hospital is a little bit like camping when it comes to hygiene. The showers aren't great and washing your hair can be more effort than its worth, if you've been in there awhile you might feel too weak to stand up for that long (when I came out mum had to give me a bath as my arms felt so weak I couldn't do it myself). Things like dry shampoo, wet wipes, body sprays and moisturiser can help to make you feel much more normal. You could also get someone to paint your nails and do your make up so you dont feel like you look as sick (that last bit is more aimed at girls!) 
5. Your favourite snacks. Hospital food has a reputation for not being great and although you do get 3 meals a day you might suddenly get your appetite back and fancy some of the old foods you loved. I had massive cravings for ready salted crisps and went through a few packs a day when I was feeling better. It helps to break up the wait between meals! 

What do you take into hospital to make the stay more comfortable?