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!

Motivation

This week has been a very productive week in our house and everyone seemed to be motivated to sort things out for the next year! Me and Tally made the decision to put our deposits down for the student accommodation that we were looking at in Coventry. It is £125 a week which is about £40 more expensive than our house at the moment but as it is bills included and is next to the uni buildings we go to we will probably be paying around the same with taxis, tv licence, internet and bills factored in. I am really pleased with the decision as I think it will make next year a lot easier for me. My lectures are a couple of minutes walk away and I am also next to the library which is good for when I come to do my dissertation. I can get to town in 10 mins and everything else is very close. There will also be less stress as I don't have to worry about paying bills and whether other people in the house will pay me back on time! Overall it's the best place for me to be in my final year. I do wonder if I didn't get crohns would I have considered it as an option but this is just one of many things that has had to be changed and considered now. 

The other good news is that I have my job back at Odeon! I worked there over the summer doing a few shifts in the week and really enjoyed it before I started to get ill. I love working on the screens and being able to catch different bits of the films and I haven't been to the cinema since I worked there. I called my manager on Monday and although she said they were expecting to hear from me sooner they had saved my job for me which I am so grateful for! They were very understanding when I gave them my conditions for coming back (2 shifts a week, up to 6 hours to start, no working on retail) and I go back on Saturday! I really can't wait to start feeling abit more normal but I know I need to be careful and not push myself too quickly. 

I have also booked an appointment to meet with the health and well being officer at Uni to see if there are any ways to make my time at uni a little bit easier and to help me apply for disabled students living allowance which would really help.

Tomorrow I am planning to visit somewhere very exciting and I cant wait to share it with you I just hope it goes to plan!

Organising my room

This year I want to start being more organised and prepared, I know that stress can affect crohn's and I have seen in myself what happens when I get stressed so I am going to do as much as a can to prevent that. This weekend I moved back into my house in Coventry so whilst unpacking I decided to have a real clear out and organise the things I use the most. I am very limited on space and storage so everything needs to have a place! I managed to clear out a couple of bin bags and a recycling bag full of rubbish, mainly toiletries and papers from old work. I have also put some more things on eBay, last weeks sales made £70 which I am very pleased about!

I have included some pictures of my room to show how I have organised some things and also because I am very nosy about other peoples bedrooms so I thought you might be too! My bed is never usually made but the cushions with words on I did make from an old bed sheet, the quilt at the end of my bed was a gift for going to uni. The pictures on the wall are hung by a piece of string (I am praying the holes from the nails aren't viable when I take them out or the landlord won't be happy!). I am planning to bring up some more pictures on Wednesday.

I have labelled the draws to remind me what's in them, I moved them so I can get better access and also use the top for space. On the top I have put all the products I use every day for example cleanser and moisturiser so they are easy to reach when I'm feeling lazy. I have put products there that i don't use very often like bio oil to encourage me to use it more. I have also got my make up bag and a bag with my medicine in so I don't forget to take it. I managed to compress my toiletries from 3 bags to one draw by being strict and throwing out anything that I wouldn't use again or was getting old.

I have also shown a picture of my wardrobe, luckily I have 2 draws under my bed, one for underwear and one for t shirts and other tops otherwise would never fit anything in! My wardrobe is sorted by items grouped together and all my shoes are kept underneath along with trousers which are folded in a pile. My bags are all grouped together on a shelf so I can see them and change them around. I also sorted out that my 2 main bags for uni have essentials in like tissues, a mirror, hand cream and paracetamol. The hand cream being in my bag will encourage me to use it.

The folder is my crohns folder so everything is in one place, pretty impressive amount of paper work since October! I really hope my room stays like this and I keep the motivation up to be organised. What are your tips for keeping on top of things?

KIKO Cosmetics

In Germany we found one of my favourite make up brands called KIKO cosmetics. On a trip last year to Barcelona we saw this shop and got a few bits. I got a mascara for around €3 and it has been my favourite ever since! This time round I decided to get a few more bits as there was a sale on so a lot of the products were half price or less. In total I spent about €16 but for the amount I got I am very pleased!

Foundation: this foundation was in the sale and although it is an anti age one I had to buy it as I loved the texture. It is very creamy and quick thick so covers well but doesn't make you look like you are caked in make up. I bought the palest colour as my skin is very white at the moment but it is still a good match for my skin and makes it look abit healthier.

Lipstick: I have a few red lipsticks but this one was €1.90 so I had to try it out. It's really good and lasted all night so I will be using this one for awhile.

Smokey eye pencil: I have wanted one of these for awhile and the one I had my eye on was slightly different but this seemed a good colour. It is a dark grey as I find black smokey eyes can be a bit hard especially on pale skin. This was really easy to use and also lasted all night so I will be having a smokey eye more often!

Nail varnishes: I haven't used these yet as I have acrylics on but I bought them on recommendation from my friend. I have lots of dark nail varnishes but not many neutral ones so I bought these colours as they are quite classic. They will also be good if I decide to go back to work as dark colours are not really allowed! The grey colour I am unsure about but I think it would be good on toes instead of hands!

You can get KIKO from this website http://www.kikocosmetics.com

Germany!

I spent last week in Germany with the University and it was so good! I did write a blog post while I was there but it didn't upload so I will just write everything in this one. The journey there was very exhausting, it took almost 12 hours because of the snow which meant lots of delays but we all managed to keep each other going and by the time we got to the hostel it was a relief to be going to bed!

The hostel was really nice, it was very clean and comfy and the breakfast in the morning was surprisingly nice. My room mates were impressed with the amount of tablets I had to take when we ate! The trip was an innovation trip so we spent the week at a German university with other students. It was very hard work and quite stressful with the deadlines they gave us, my energy levels were a bit up and down as well. One day I fell asleep 4 times and eventually they decided to just leave me! The food was good at the uni, you could get a big meal with desert for €2.35 and it was delicious. I didn't feel like I had to avoid many foods and there was some choices which made it easier. I even ended up trying sauerkraut which is like a pickled cabbage and enjoyed it!

When we weren't at the university we had some time to look around the city and visit some of the sights. One night we went on a tour of the cathedral and other places around cologne. On our final day we ended up visiting them again in the daylight to see abit better. The cathedral was amazing and we all lit a candle which was quite overwhelming. We also visited the love locks which are on the bridge over the river. This is where you and the person you love put a lock on the bridge and then throw the key down so it will stay locked there forever, it is something I would love to go back and do. We also visited the chocolate museum but didn't do the tour as it was quite expensive. Instead we decided to spend some time in the gift shop where I got a few presents to bring home. We also spent an evening at the hard rock cafe which have never been to, personally i thought it was very over priced and not that good, i didnt feel very well after either but i am glad ive been! I have included some pictures at the bottom of the sights we saw!

Overall the trip was really good and has shown me that I can push myself further than I think. When I was in hospital in October I really didn't think I would be coming back to university so soon and going to other countries so I am quite proud of myself for being able to do it! It has given me lots of motivation and I would love to plan some more trips abroad soon.

Crohns in Cologne

When I was first diagnosed with crohns everything seemed like it was a first again, my first meal with crohns, my first night out with crohns, and now I am preparing for my first trip abroad with crohns. Tomorrow I am meant to be visiting Cologne, Germany with my University and honestly I am very scared! Travelling abroad is exciting but scary and when it's your first time travelling with an inflammatory bowel disease and a bag full of prescription medicine you can't forget to take it makes it even worse. Add in the snow causing possible delays and cancellations and you have a disaster waiting to happen.

Stress affects crohns so I am trying to keep calm and concentrate on being excited and getting the opportunity to visit a new country. I hope I have done as much as I can to make the trip run smoothly but this will be a test for me and my illness!

Does anyone have any advice for travelling abroad?

Manuka honey

I've heard a lot about manuka honey recently, most of it very positive so I thought it was about time I tried it. Millie Mackintosh from made in Chelsea talks about the skin care range a lot on her blog but it is quite expensive. The honey can start at around £8 for a small jar. You can get manuka honey from Holland and Barrett and it's currently in their penny sale however the honey I have was given to me. It also contains ginger which is known to settle the stomach. Its a known anti inflammatory which is why is has been linked to crohns disease.

It wasn't the consistency I was expecting, it is more solid than regular honey and has quite large pieces of ginger in. I had mine with some Greek yoghurt and to be honest it wasn't very nice but think that was the ginger! I did finish it and will be trying it again but maybe in a different way such as on toast or just by eating a spoonful. Tonight I've eaten tomatoes which normally make my stomach hurt but tonight it feels fine, whether I'm getting better or it's the honey I'm not sure but I will keep eating the stuff and get back to you!

Boots 75% off, Wilkinsons sale

Today whilst shopping I noticed that the boots sale had increased to 75%! Judging by twitter it was the first day of this big discount so I got there just in time. There wasn't much left but I managed to find a few bargains. This gorgeous vintage mirror was just £5 reduced from £20, I had my eye on it for awhile but didn't want to spend £10 on a mirror so when it was reduced again I couldn't help myself! The tea caddy was less than £2 and comes with twinning tea bags so will make a lovely present. The make up bag was around £3.50 which is already a good price for such a nice bag. It comes with a hand cream, mirror, nail file and lip balm which would also make a lovely present (if I don't keep it for myself!)

Wilkinsons also did well for sale items, they had a whole isle for them! I decided to stock up on a few bits for Christmas next year while it was reduced. All the items in the picture were either 25p or 50p and they include a gift bag, plain cards, Santa sign, ribbon and cupcake set. I also got the lovely big soap for 50p which I may add to the make up bag to make a nice present.

Charity shopping

I also couldn't resist stopping at the charity shops in Stevenage whilst I was shopping, I was looking for a coat and you can get them really cheap if you look in the right places! I didn't manage to get one but I did get a nice gilet. It is a size 14 but fits well for when you wear jumpers underneath it. It is nicely modelled by my mum in the picture! There is also a great scene in the sex and the city film where Charlotte starts running again when she's pregnant in a white gilet (I found a picture!) and it looks so cosy to run in that I had to buy one, probably the worst excuse ever heard to by some clothes! This one was F+F and cost me £4. In the same charity shop I also got these butterfly platters to put food on for 50p. They are so funny I had to buy them and hopefully I will be able to think of a theme so I can have a party and use them! The spotty jar I got for the house in Coventry for us to put sugar in, it doesn't match the others but they are similar colours so they match in that way. It was only £1.25, there is lots of rubbish in this charity shop but if you root around you can find some gems and probably fill a house with crockery! The top was from another charity shop where I also bought a bag for my cousin. It is a size 18 which seems massive as I am only a 10 but i think it may have been shrunk. I plan to wear this top with some leather trousers which I will buy when I have reached my target weight! The top is from primark which I normally wouldn't buy from a charity shop but it was reduced to £1.35 so I couldn't resist!

Wedding hair!

My cousin has always had her fingers in many pies business wise and recently she has started doing hair and make up for a photographer! When she asked for models I jumped at the chance as I love having my hair done and this evening she practiced a wedding style on me. She is getting married next year and I am her maid of honour so I can't wait to get stuck into more wedding stuff once I'm feeling better :)

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.

Food shopping

I get asked a lot about what foods I can eat with Crohns and what I can't so I thought I might share my first food shop since being at uni. I am not a vegetarian so my diet includes lots of meat but I do try and avoid too much dairy (although I love cheese) and the only other things I really avoid are leafy greens, fibrous food and tomatoes. My IBD nurse has told me to avoid fibrous food like brown breads and rices which means that my cupboards are usually stocked with lots of starchy white carbs like spaghetti, pasta, rice and noodles. I can't live without chicken soup at the moment. It's great for when I feel like I need to eat but I'm not particularly hungry for anything. I've also bought some honey which I've had last week with Greek yoghurt and it seems to settle my stomach after a meal and reduce bloating. I may try manuka honey as its in the penny sale at Holland and Barrett. This food shop I also tried to buy more fish, this included tuna, haddock, smoked salmon and cod, most of which was reduced which I have put in the freezer to eat when it's needed. I enjoy fish with noodles and some soy sauce which is a simple meal that doesn't put any pressure on my stomach. I always buy eggs for breakfast and white bread to have with peanut butter if I'm in a rush. I have read that smooth peanut butter is good for Crohns as crunchy is hard to digest but they both include the nutrients from nuts. My freezer also contains some frozen veg like broccoli and sweet corn that I can add to any meals. I'm still unsure if they are good for me but I will still eat them! The most essential part of my shopping has to be the bottle of gin! It's just a shame it's value!

Treat Week!

Although last week wasn't the easiest I did have time to treat myself a little bit! We did a big food shop which I will write another post about soon, it gave me a chance to get something nice for breakfast the next day. I had a muffin with scrambled eggs, smoked salmon and cream cheese. I got the bits reduced so it cost less than a pound! The cocktails were a treat for me and my friend/flatmate, we went to a restaurant called cosmo's and drunk cosmopolitans. I have to admit I only had 2 and was abit tipsy! The next day I caught up with another friend and we got our nails done for her birthday and for my trip to cologne. I chose a red instead of my usual manicure for a change. I also got the rings and bracelet from Topshop in the sale, they say motivational words and look good with the nails! Looking back over the week I can see it was good and I'm very lucky :)

Good news!

Finally something positive! Literally right after I published the last post I received a tweet from miss selfridge to say I had won their competition! All I had to do was pick an outfit from their new collection and tweet it :) this has definitely cheered me up! I can't wait to receive it!

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.

Currently reading...

Bupa London 10,000

Today my Dad and I received our Bupa London 10,000 fundraising packs and running tops from Crohns and Colitis UK! Although I wont begin training for it until the beginning of February as long as I am still feeling well but it does mean that I can start to raise money.
I have started my own Just Giving page for anyone who would like to sponsor me online, the link is here
I can also be sponsored in person so let me know if you are interested. I will be posting regular updates on my progress so please keep checking back! 

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! 

Shingles...

So after waking up today and realising that the the rash under my arm had got even worse I took action... and looked it up on google. I did find it strange that if it was a reaction to the Azathioprine then why was it only on one side of my body? After typing in 'rash on left side of body' it came up with Shingles. As soon as I think of shingles I think of a really contagious horrible infection, something really dirty and disgusting. If someone told me they had shingles I would definitely stay away! However it actually isn't contagious but can be dangerous for someone who hasn't had chicken pox before.
On the websites I looked at the words Immune System kept coming up which rung alarm bells in my head as the Azathioprine is an immunosuppressant so I have a weakened immune system. It said that for people like this it can be dangerous so I rung NHS direct (I hate doing that they are never very helpful!). After telling me the GP I currently see in Coventry doesn't exist (fairy sure it does) she told me to go to the walk in centre straight away to see a GP. 
So off we went! They were very rude, when I said shingles the receptionist actually looked at the other receptionist and rolled her eyes. It wasn't until I mentioned that I have Crohns that I was taken a little bit more seriously and saw the doctor about an hour after that. He diagnosed shingles straight away and was really shocked that I have had it for so long and haven't been to see anyone about it. It is meant to be very painful and although it does hurt I think I have just got so used to being in pain that I didn't really realise where the pain was coming from.
I've been put on a 7 day course of tablets called Aciclovir which I have to take 5 times a day (bringing my total to 15!) and hopefully it has been caught early enough that it will heal quickly. Here is a horrible picture of it, I think its important to show things like this as they are clearly a part of Crohns for some people. I cant imagine anyone ever finding me attractive ever again but it makes a change from talking about butts!

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?