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!

Latest hospital appointment

Today I had another check up with my gastro nurse Deborah. It has been a month since my last appointment and a few things have happened since then. I've had a couple of bad spells with picking up illnesses and one morning spent being sick for 6 hours after a chilli (damn tomatoes!) but overall I'm feeling okay. The main problems for me have been the side effects with my steroids which is why I'm relieved that the nurse has agreed I can begin to reduce them again. In the next 3 weeks I should be off them completely and I hope this means I can say bye bye to the moon face, even Deborah said i look 'steroidal!'

It all sounds great but I could see they didn't have much confidence in my ability to be just on the azathioprine so I have been given some information on Humira so I'm prepared in case that is my next option. Humira is an injection i would take every 2 weeks and is also an immunosuppressant and would be taken alongside my azathioprine. The thought of injecting myself with something isn't pleasant but neither is surgery which is the step after that. Today was the first time that surgery actually seemed like a possible option which was scary and has really hit home.

On the advice of my nurse I'm really going to re think my diet (the fact I've put on more weight is also a factor!) I always feel hungry but now I need to look at what I'm eating and change it. I am on a low fibre diet but for me the problem is how much carbohydrate I eat so my focus now is more protein like oily fish and chicken. Fingers crossed this will help me feel better and loose some of the weight I've gained!

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!

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.

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.

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? 

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! 

Milestone

I told myself if I hit the next milestone of page views then I would post a funny picture of me taken in the hospital, obviously I didn't think I would ever hit that! Thank you everyone who is reading this, I hope its useful to you in some way even if its just to laugh at how cringe it is (thanks Elliot!) This picture is right after I had my first Colonoscopy, I'd been fasting for over 24 hours and was so hungry all I could think about was the ready salted crisps I'd bought with me (its all I want to eat in hospital!). This picture was taken literally just as Dad told me I couldn't eat them, I was so upset! Luckily he was joking and I got the crisps but this photo makes me laugh as I was still very under the influence of the sedative they gave. It reminds me that sometimes it's not all that bad, these are things I have to get used to now and they remind me of how strong I am. I'm not saying I would like another Colonoscopy but I know eventually I will need one and that's fine, I can handle it. 

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!

MRI Scan...

Today was my last hospital appointment until after Christmas and I spent it in the radiology department having an MRI Scan. I wasnt that nervous about this one as I thought it would just be laying down in a tunnel for a little while.  The only part that scared me was the unknown injection of dye that I knew I would be getting. When it comes to injections I am fine getting a cannula, they hurt a little but I can get over that and I'm happy knowing I dont have to keep having needles, but for this i wasn't sure if a cannula was an option.  For anyone who is having an MRI and is hoping I will say something good about it like 'it was fine!' stop reading now! I would hate to put fear into someone like I have had done on some Crohns blogs but honestly, I thought the whole thing was awful. 
It started with a half 8 appointment which I couldn't eat or drink anything for 6 hours before, that part was fine as I wasn't hungry anyway. When we arrived the nurses were lovely, I was allowed to keep all my clothes on as they didn't have any metal or zips (so wear leggings if you can instead of jeans and try to wear a jumper). Then it got unpleasant. I was given a big jug of liquid to drink which was a warm thick consistency and was told to drink it In 45 mins. The first cup was fine but after that it became undrinkable and I found myself heaving back into cup. I only managed half and although the nurses were unsure that it was enough the MRI went ahead fine anyway. I was taken into a room where they went through a list of questions which could prevent me from going any further like have you had heart surgery etc. I answered no to all except one which was about intimate piercings. I have my belly done and I did have a ring in my ear which were fine to take out, however I also have had my nipple pierced since march and still can't get it out. It is very much stuck. They warned me about the chances of it heating up and even said they had a belly bar burn someone before but I didn't really have a choice but to go in anyway. 
The machine is smaller than I thought but still very intimating and not comfy to lay on. They did some test scans first to see where the liquid was but saw it wasn't down enough so I had to go to the toilet and walk around for abit. When I went back the test began. Although they give you headphones the noise is extremely loud and pulsing and very scary when you are in a small space. The space really is tiny, the roof of the scanner is right infront of your eyes. All I could think about was the injection and the piercing which made me upset and the whole process a lot worse. After a few tests they took me out and inserted a cannula (massive relief!) which calmed me down, I could also lay on my front which meant I couldn't see the ceiling. I was given some dye injections and a muscle relaxant and told it might make my eyes bit funny after which sure enough it did, I couldn't see infront of me! After the cannula was removed I was allowed to leave but it has been a bad day and I've felt unwell for most of it. I hope this hasn't scare anyone and looking back I could have had worse things done but if I had to choose I would have a colonoscopy any day!

A month on Meds

On Saturday it will have been a month since I came out of hospital where I was diagnosed with Crohns and things are definitely much better! I'm having more good days than bad and some days when I forget i'm even ill at all. I've been able to go and visit Coventry which I didn't think I would manage for awhile but its also shown me that I do need to take it easy and i'm not as strong as I was before. I get tired quickly and my legs ache but I hope that when I come back to University in January I will be able to cope. Since coming out of hospital I've been on some medication which I think has been working for me. These are Entocort which I take 3 capsules but will only be 2 next month, 1 capsule of Omeprazole and 2 Adcal tablets (my new prescription is for tutti-fruiti flavour!)  All the tablets are fine but its taken some time to get used to not being able to eat an hour after I've taken them! It means getting up an hour before I want to eat breakfast! 

Hopefully i'm going back to see the gastroenterologist in a couple of weeks and then I have an MRI scan on Friday and that will be it until the new year which is exciting. I can see in myself the progress I've made, not just with how much better I feel but how well I can cope with things. I was terrified of needles and couldn't get a blood test but now the thought doesn't scare me, I might even look into giving blood! Things are definitely looking up! 

Back to hospital!

So I spent this weekend preparing for a Colonoscopy on Sunday afternoon. The last time I was in hospital I had a Flexible Sigmoidoscopy which is sightly different as it doesn't go as far round. I also didn't do anything to prepare I was just taken straight up in the morning. When the letter came through the post for the Colonoscopy it was very confusing, I must have read it hundreds of times and seemed to get different information each go! That's when I decided to have a look online... 

For anyone who is getting ready to have a procedure that they are a bit worried about I really would not suggest you look on forums, there are some complete horror stories on there! Most people said how awful the laxatives were and that the whole experience was really awful. Luckily I found it fine and I wish I hadn't looked before! I hope that if anyone is searching online they find this instead so they can see its really not bad at all! 

The laxatives I had to take were 10 tablets on Thursday and Friday which had no effect at all and then a sachet on Saturday night and Sunday morning. I expected the sachet to taste disgusting after it fizzed in the bowl but it was just a strong lemon flavour. The worst part of the weekend was not being able to eat after 1pm on Saturday, that evening I was so hungry but the clear soup we made just didn't sit right on my stomach! Sunday wasn't so bad as I felt a bit nauseous anyway so i didn't think much about food. Other than going to the toilet a bit more than usual it was fine, I would recommend having a hot water bottle though to ease your stomach as you can feel it bubbling!

The trip to the hospital went really well. We went into the endoscopy unit which I recognised from before. They spoke through everything with me and then it was about an hour before I changed into my gown and was taken into the room. The nurses were lovely and the doctor was much more friendly than before! A cannula was inserted in my arm which was the worst pain but even that doesn't hurt much now. I was then given the sedative through it and told to enjoy the drugs! I was expecting to have a long nap but I actually stayed awake the whole time. I could feel it but it didn't hurt it was just uncomfortable when the camera went round corners. The whole procedure only took about 20 minutes and then I was wheeled back to the ward. I couldn't wait to get out so I got dressed and the nurse took my needle out, I left the hospital within half an hour complete with pictures of my insides! 

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!