It’s Just a Challenge…The Challenge Continues

Tags

Coeliac Disease, Colonoscopy, Crohn's and Colitis, Crohn’s disease, Crohns and Colitis Uk, Gastroscopy, Gluten Free, IBD

Apologies, I haven’t blogged in such a long time! (Normal opening sentence and I appreciate your time if you are reading this.) I can’t even remember what I last posted. I vaguely remember writing about Crohns; breaking it down into little sections and the next part would be Disease; well anyway for now i’ve decided to sack that off because so much has happened in a short space of time.

Since my last post 14th Feb, I have been achieving remission with my Crohn’s which is amazing news. However I received a phone call before my colonoscopy and some tests had shown that I could be Coeliac as well, this was revealed from my first Gastroscopy. I was advised by my Nurse (Guardian Angel) not to GOOGLE it or research it or panic. Admittedly, I did all 3. I mean, why would I not? What else in my life could go wrong? I love food and anything to do with it, this could fundamentally be life-changing and how was I to deal with it?

Following the phone call, a colonoscopy and gastroscopy was booked for the same appointment and I was to carry out the Gluten Challenge.This is a 6 week challenge where I had to eat 4 slices of bread every day for 6weeks!! I mean don’t get me wrong I love (loved) a sandwich as much as the next person but this sparked hell. One week in and I started being sick, bloated and experiencing over whelming fatigue. It was dropped to 2 slices a day and this was still a nightmare, it was the longest 6 weeks of my life, I had never been so excited for a gastroscopy/colonoscopy.

Finally, the date arrived, the usual dynamite had been taken and my usual taxi driver (bestest Mark) arrived to take me to the fun and giggles we normally have on each of my hospital appointments. Its like a tradition. Being me; turned up with my make up on as if nothing was going to happen, and I strolled into the room like a boss. I was assured that the camera would be changed for each procedure, this I thought was good to know. Gastroscopy was first, there is no sensation like the throat numbing spray, but this time it made me sick 😦 those who know me well will know I hate being sick (YUK) Again, I had another ulcer and inflammation. Then followed the colonoscopy, painful this time, but still was not as bad as the one on gas and air, but this time I had polyps removed. I couldn’t help but think there is always something.

It took a while for the results to come through but I as far as I was aware I wasn’t Coeliac but little did I know a whole can of worms was about to open. The weeks went by and I started to feel fatigued, more so than normal, back to being in the bathroom 10 times a day, feeling anxious and depressed. Originally I put down to changing my job, relationship issues and generally feeling stressed out. I had a weeks holiday from work and felt so poorly for the whole trip, I wasn’t able to go back to work and ended up signed off for the week with a suspected flare up. I tried to go back to work but ended up at the Lister hospital, I was in agony and fed up being sick and stuck in the bathroom. Feeling isolated and lonely I was once again admitted and put on a drip. Is this a feeling I should start getting used to I wondered, all I wanted to do is sleep.  This time was different because they didn’t know what caused the flare up. This time I saw a mental health team because I had, had enough. Enough of the bullshit, enough of being on my own and enough of my body hating me.

The next day I was sent home again on the promise of if I deteriorate I am to go straight back to the hospital. The next day I was in bed, but the home phone was ringing, who is this I thought. It was the Dr I had seen in the hospital, he was baffled by how poorly I was feeling and looked into my results to find that my biopsies had revealed I was Ceoliac and the blood tests had shown a false positive. My life is now Gluten and Wheat free. Excuse me whilst I pop open the champagne to celebrate. I felt awful, I still hadn’t eaten properly but now I was faced with what should I eat??

As far as I know, Coeliac is common with Crohns.

What is coeliac disease?

Coeliac disease (pronounced see-liac and spelled celiac in other countries) is a lifelong autoimmune disease. It is caused by the immune system reacting to gluten.

How common is coeliac disease?

Coeliac disease is common and affects one in 100 people. However only 24% who have the condition have been diagnosed which means there are currently nearly half a million people who have coeliac disease but don’t yet know. If a first degree family member (such as mother, father, sister or brother) has the condition then the chances of having it increase to one in 10.

What causes coeliac disease?

Coeliac disease is caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye. When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.

What are the symptoms of coeliac disease?

Symptoms range from mild to severe, and can include bloating, diarrhoea, nausea, wind, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss (but not in all cases), hair loss and anaemia.

What is the treatment for coeliac disease?

Once diagnosed, the only treatment for coeliac disease is a gluten-free diet. Gluten is found in wheat, barley and rye. Some people are also sensitive to oats. Once gluten is removed from the diet, you should start to feel much better.

https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/

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The news was hard to take in and I am still struggling with it now, but as normal I take each day as it comes. My next post will include more in depth information on Coeliac when I have got my head around it myself. I am also aiming to do a post on anxiety.

For now though, the challenge continues……

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Crohns…Oh Yeah That…

I think it has been well over a year since I have blogged. Shocking. Should be ashamed. As its Bowel Disease Awareness month so it needed to be done. I’m still here, anyway While there’s life, there is hope after all.

So this Crohn’s thing…almost forgot about it if it wasn’t for the consistent fatigue, and the fortnightly injections, the random days of being so pale, i’m almost invisible, but amongst this I am achieving remission.. Yes… touch wood, my Crohn’s is finally behaving itself (except for the odd day here and there making it an interesting day at work).

At lot has happened for me, I’m back living in Cornwall.. After an impromptu hospital stay in August.. And being diagnosed with Coeliac Disease as well, enough was enough and it was time for some much need time out.. Theres an element of me which misses the London way of life, my job, the buzz, and most certainly the bunnies. It just wasn’t my destiny, but that said, I lived the dream that I wanted to do, that not many people thought i’d love and enjoy, but you know what I did it and I did it with a silly highly active bowel disease as well. I wasn’t expecting that.

So Crohn’s.. Inflammatory Bowel Disease… definitely varies from person to person. And the care varies from Doctor to Doctor. And yes, I miss my healthcare team in Hertfordshire more than the above… Eternally grateful to them and more so my Dr, and my argument winning me Humira injections, which have allowed me to achieve remission so successfully.

We should take a moment to appreciate my enemy… Prednisolone or Steroids if you will. First thing my new doctor said to me. Hayley how do you feel about steroids.. Excuse Me, I will leave now… Hayley stands up. Ah good so no Steroids then.. Um no absolutely not.. Unless I’m dying and the contents of my insides are on the hospital floor.

For those wondering, yes I gained 4 stone from steroids, and yes, I can’t see anymore without my specs and yes my bones are now thinning. Why, the doctors just hand these out so often and freely is beyond me. Mentally they almost destroyed me. I can’t begin to explain to you, how soul destroying it was for me to look in the mirror and not even recognise who I am anymore. To visit Mousehole from London and bumping into people and you could tell almost what they are thinking.. Seeing all those glamorous ladies on my way to work, I felt and looked like a whale. It’s an experience I will never forgot, not being able to look in a mirror. I mean as if you need all this after you’ve spent 12 weeks passing blood, forever sleeping and being grey. Haha and at least of all the side effects.. and the withdrawal. I have a box for an extreme emergency, but I like to think now, Im so far ahead with it I can recognise the signs and have a few days out on a liquid diet.

Being Gluten and Wheat free (Coeliac) has helped too, this crushed me a little bit to start with. Because I am a foodie. But alongside the injections this has been a hero too. Its awful tho, the consistency of the food is like sand (I’ve never eaten sand but it’s the only thing I can think of that is even close) The bread is horrendous, I don’t eat it. So I couldn’t tell you when I last ate a sandwich. It is hard, and my god I just want to put my face in a dominos pizza but that isn’t going to happen, only if its gluten free. And a pasty, well that doesn’t bare thinking about. Its bloody expensive as well.

If there is one thing I have learnt and need to remind myself is to enjoy each day, have fun and just take each day as it comes, because you have no idea what life is going to throw at you. In the grand scheme of things I am one of the lucky ones and with the right care and lifestyle it should stay that way. And there is always someone out there worse off than me. And it sometimes takes an emotional conversation to realise that.

So you lot reading this when you are A) eating normal pizza and garlic bread B) tucking into the tastiest fresh white bread and C) eating a pasty… enjoy every bite because you don’t know when that will change.

Remember just because you can’t see it doesn’t mean it’s not there, it’s normally hiding underneath. So if I’m quiet and very pale the likelihood is I’m suffering, but it’s ok, I’ve learnt to crack on, man up and get on with it.

https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease

 

 

 

Finally a bLOG……. Part 1

Tags

Crohns and Colitis Uk, For Crohns, IBD, Prednisolone

Hi All!

I haven’t blogged in such a long time! Apologies! If you click the link and read this post that makes me really happy. So Thank You for your ongoing support and time to read the garb I so passionately write about.

Well goodbye to 2014 what a crappy old year (pun intended) that was….. Looking back however in the grand scheme of things were things really that bad? hmmmm…to an extent I guess.

So I started the year on 8 steroids and finished on none.. Result! I have vowed never to take them again! I have tried two different medicines which failed and I’m now running out of options, but my injection loves me and I love it.

For weeks I have wanted to write a post but the time has flown by, 2nd month of 2015 already. 2014 certainly threw many challenges my way, and well it has hopefully made me stronger for whatever else is coming my way.

For weeks now I’be been trying to write this post, i started it and did’t save it and lost it..gutted! But I’ve been lying there in bed at night planning it out in my head and I hope that this layout I am about to try will cover lot of what I want to talk about. I have broken the blog into two parts so I don’t bore you all…..

So here goes…

C- Crohn’s and Colitis UK

Crohn’s and Colitis UK is a truly amazing charity. They have helped me in all sorts of situations. I was lucky enough to receive a personal grant towards the service of my car and they have some amazing support on the website. There is a copious amount of help sheets from being newly diagnosed to support when at work. I took part in the London 10k walk in July and the sponsor money that everyone so kindly donated gave me a chance to give someone else to have a personal grant. I am also a member of the charity which sends me a monthly newsletter and also a card that allows me to use public toilets if it’s an emergency.

I am really excited to be attending my first East and Mid Herts Crohns and Colitis meeting on the 10th February in St Albans. it’ll be great to meet some more new faces and discover peoples experiences.

Watch this space!

http://www.crohnsandcolitis.org.uk

Somewhere along here, I fell over…..

Maximum Steroid Face

Such a Great Rainy Day

R- Remember

Remember, life is short and I only get one chance to have a crack at this so I’ve got to enjoy it no matter whats going to be thrown my way, I’ve got this far I can keep going.  It’s easy to forget that theres actually thousands going through this, some who are going through far worse than me. It’s important to not give up, although there has been many occasions where I have felt there is no way I can do this, why me? It’s not fair? But…. it is me and I have got to make the best out of the situation.

Nothings Impossible Really

 

 

 

 

 

 

 

 

 

 

 

O- Oh my God (I’m in Remission)

When your diagnosed with IBD it feels at the time the scariest news to be told, because whats going to happen from here?  When I was told I had not long come out of hospital, dosed up to the max on steroids and painkillers not knowing what was next. I tried two different types of medication both my body would not respond too, making it 100 times harder to reduce the steroids, feeling that remission was never going to happen. But thankfully, for now I am in remission and to be honest its the nicest feeling ever to not have diarrhoea ten times a day. I can tell you now, it is amazing in life the little things we take for granted……..

Yep

H- Hospitals

10 days on a gastro ward is enough to give anyone the heebie jeebies and my god it was horrible. The nurses and carers were all so kind especially when I puked up all over my new clean bedding. And when I got all upset for getting annoyed at the lady opposite me who later that afternoon, pooed herself and died. And for laughing with me when I had taken my prep for the colonoscopy. It was the scariest place ever. I didn’t sleep much during the nights as you just had people shouting for the nurses wanting the commode or being sick etc… truly horrible.

I genuinely cannot fault in anyway the care that I receive for my crohn’s up here. I have a specialist, a nurse and a great team of doctors who now know on a first name basis. Nothing is ever too much trouble.

I think I feel like this quite often!

N- Needles and Tests 

Not for the faint hearted is old crohns and colitis. I have actually lost count of how many blood tests I have had in the last 14months. Most times I go, they are a nightmare as since I have been on steroids my veins are just awful. I  feel bad for whoever gets lumbered with me. Lucky needles have never bothered me, and thats a good thing as I doubt I’d be able to self inject if that was the case.

Tests don’t bother me so much either. The worse part of a colonoscopy is the prep the day/night before and the sheer hungry feeling in the bottom of your stomach. However my last colonoscopy was ummm.. an experience??

So, as per usual the team were running late and kindly left me until last for my procedure and for the whole time I had nothing to drink. Clever. The nurse came to prep me and said, um… I can’t find a vein for your cannula. Brilliant. So there I am now in the room and the gastroenterologist comes over to me takes one look at my arms and hands and said No. I said No what? He said veins. He said you have NO choice but to have the colonoscopy with just GAS AND AIR. I didn’t have time to even think about it. Over he comes with the gas and air, and it didn’t take long before I was on another planet.

It was the MOST painful thing i’ve experienced yet especially when he went around the corner. However my bowel is healing well, and has left a few scares but he was very please in comparison to how he had seen it before. The nurse as well, is just lovely. I declared my love for her whilst I was high as a kite and said that I’m her favourite patient.

So this month I have one more test to endure… the Gastroscopy (camera down my throat) and well to be honest I am genuinely petrified. And….I know what your thinking and about to tell me in a comment…. I will let you know if its fine when I have it done. For now I will remain petrified.

 

S- Steroids 

The word Prednisolone or Steroid is not something I want to hear from a GP/GI or Nurse ever again. Man..they made me gain 4 stone if not more. Steroids are strange and always seem to be the first port of call, and you don’t even get the choice, they were just injected in me. Part of me understands why they are used, they act almost as a plaster as they temporary hide whats going on. So this gives them a chance to assess whats going on and what medication should be used going forward.

The side effects of prednisolone are just obscene it goes like this:

• Insomnia
• The midnight munchies
• Moonface
• Water retention
• Mood swings
• Thinning of the bones

And through all this you have no immune system and subject to everything particularly chicken pox and shingles.

And then..oh yes when you finally get the opportunity to come off them you get to experience the withdrawal, and that was the worst part of the process and you experience this:

• Weakness.
• Tiredness.
• Feeling sick (nausea).
• Being sick (vomiting).
• Diarrhoea.

In the grand scheme of things I have decided that I will never take pred again, and this is something the GI and my nurses are aware of. At the end of the day its my body and I generally don’t think I cope putting myself through that experience again. I got to a point that I actually couldn’t look in the mirror anymore and felt that I should of worn a T shirt that stated “I take Prednisolone, it made me this way”

Anyway No More Steroids for Hayley

Then…….

 

Now

 

 

 

 

 

 

 

Say What?!?

                                                                

Hi All,

Sorry, I have not blogged for quite sometime and so much has happened.

Firstly a big thank you for all those who sponsored me for my London 10km walk! I have raised a massive £472 in total, so thank you to those who used JustGiving, thank you to Ali for having the form in Mousehole News and to those who gave me a cheque.                           

I appreciate this so much as Crohn’s and Colitis UK is an amazing charity, they helped me when I needed some extra financial support and I am sure that they will continue to help other people. They are also a great source of knowledge for people newly diagnosed, families, advice of medication and helpful info for when it comes to fill out forms etc. It also has a great membership scheme and I now have my emergency card should I need to urgently use the loo but THANKFULLY I’ve not needed to use it!!

The walk well was a challenge. The weather WAS NOT on our side, and due to mine and Lew’s awesome time management we were the last group to start. As we started the walk you could see behind us the biggest darkest grey clouds and I just knew that the heavens were going to open. All was going well and we reached 5km just past St Pauls where we greeted with quite a steep hill, and the heavens opened. As you can imagine you can guess what happened next. Yes, that’s right I fell over, in-fact I slipped as I walked over a drain and went flying on my front like something from Total Wipeout or It’s a Knockout. I cried, like a baby, I thought I had broken my elbow (DRAMA QUEEN), but I didn’t however I bruised my knee and ripped my leggings! We continued thank-you to Lewis for his support, and actually the next 5k was nicer apart from walking across the bridge dodging all the tourists. We did the walk in 2hours which I thought was good as it was the farthest I had walked since feeling better.

                               

Since the walk i’ve had a lovely little holiday in Mousehole, spending time with Family and close friends which was lovely, had lush weather and went to the beach a few times, although due to my new meds I can’t sit in the sun for long as it makes me feel really sick. The 2 swims I had particularly at Porthcurno was great fun, wasn’t it Nat?? I assured the whole beach of how very cold the sea is there!!! I was lucky enough to go on ultimate girly date with Emma, and we went to the roller disco which was awesome. I had a lush Pizza, bottle of wine and long walk with Hannah who I hadn’t seen for nearly a year. It was a great few days and I was so sad when I left, just because going home always puts into perspective what i’ve achieved and how different my life is now.

                                                              

In terms of the Crohn’s I can now self inject! yay!! Such a massive achievement for me, so much so my nurse hugged me twice!! I have definitely felt better in myself, but over the last few days I have been poorly and my gallstones felt it necessary to come back. I’m not surprised, but having felt so well I forgot about them and it’s frustrating, so now a whole list of blood tests tomorrow and waiting for an urgent ultrasound scan. Horrible pain, nausea and really itchy skin, I’m beyond fed up. It’s hard to learn when I should be resting or what I should be pushing myself to do, I just can’t find the balance right now. Life goes on!

  

Gallstones, Really

                                            

Lost the will….

To all those I saw on my holiday and showed an interest in my blog, that really made me smile. Thank you!

                                             

 

 

                                                  

 

Big Girls Don’t Cry…….

Tags

Crohn’s disease, TNF

Hello! Well its been a while since my last blog and I can ensure you BIG GIRLS DO CRY!!

My last post proved very popular so a BIG Thank You to everyone who took the time to read it and give me some lovely comments they always put a smile on my face, which is much better than crying!

Needed an umbrella for my tears!                  

Perfect for me!

My last post briefly talked about my anticipation for my new treatment, well since the post I have had my new treatment! My new treatment is an injection called Humira. To start you have 4 injections known as the loading dose, followed by 2 two weeks after, and 1 every two weeks for 6 months after. At the 6 months it gets reviewed to see how well it’s working and then all being well I continue for 6 months and then have a colonoscopy to see how I am then and hopefully i’ll be in remission! (Thats the plan, but anything can happen.)

HUMIRA is a prescription medicine used to reduce signs and symptoms, and to achieve and maintain clinical remission in adults with moderate to severe Crohn’s disease who have not responded well to conventional treatments. One factor involved in Crohn’s disease is producing too much of a protein called TNF. This overproduction of TNF can cause your gastrointestinal tract to become inflamed which can result in pain, diarrhoea, and other symptoms of Crohn’s disease. 

HUMIRA belongs to a class of biologic medicines known as TNF blockers. Overproduction of TNF in the GI tract is associated with Crohn’s disease. HUMIRA specifically binds to TNF to block its action. This helps reduce the inflammation that can lead to Crohn’s symptoms. My previous long term medication have been immune-suppressants so the work very different, however I still need to be careful as I am susceptible to serious infection and my body cannot fight it. 

Horrible….shivers…. 😥

Wednesday the 9th June 2014 is a day that i’ll never forget. The appointment was at 10am at the QEII hospital at the nearby town of Welwyn Garden City. At the hospital they have a special unit which is generally busy with people having various endoscopies, of course it was only the norm that they put me in a bay next to someone who decided to spew up everywhere!! great joy.

I decided to take part in the research project for the treatment I am on. This won’t benefit me but it will help people in the future. This took ages….loads of questionnaires and immediately regretted saying yes to this. I needed to have a blood test for this, which was a massive epic FAIL. Since I have been on steroids having blood tests is generally a nightmare for me. The nurse who was doing my injections did the bloods, first attempt in my arm, nothing, second attempt back of right hand (OUCH) nothing, third attempt back of left hand (OUCH) nothing, fourth attempt back of right hand again and at this point I was starting to lose the will to live. I felt a bit faint and weird so they gave me some toast, biscuits and lemonade (winning)!!

The big day!

I know feel like this on a regular basis!!

As an individual needles have never bothered me hence why I went on my own for the loading dose of Humira. The loading dose consists of 4 injections, 2 in each leg and 2 in either side of the stomach. At this point the bed was loaded with the 4 injection pens, tissues, forms, info booklets and a sharps bin. By this point I had started to get hot and clammy not knowing what to expect. I immediately regretted not asking for the remecade infusion but it was too late! But deep down I knew that this was the quicker convenient way that would start my journey coming off the steroids. Back to normal life.

The nurse came back all prepped ready to give me my first injection, she had ordered the pen as that is most peoples preference little did she know, I am not most people. The needle is tiny, so I thought, ahh this will be OK! She asked if I wanted a go at doing it, I swiftly said NO thank you! She explained that when the fluid enters you it can be painful. I said ok, feeling really apprehensive at this point wondering why it was me that was going through this horrendous experience.

The nurse showed me how the pen worked, seemed relatively simple, she cleaned my skin ready for the first injection. She placed the pen at the top of my thigh, the needle went in and then BANG!! Suddenly i could feel this cold sharp excruciating pain in my left leg. I went into shock and started to have a panic attack. At this point I felt that there was no way I could have the remaining three or even begin to imagine doing them myself at home. She looked me in the eye and said Hayley you either have this and start the treatment or you will have to have surgery. My heart sank. My phone then rang it was Lewis, I told him, I couldn’t do it anymore, I broke my heart he said be brave you can do it! I hung up and cried even more, the nurse came in and no idea how upset I was she gave me a hug and a box of tissues.

Bad Day

Too many challenges??

I composed myself and knew I had to do this. She got another nurse to come in and help because the noise sent me into panic. She prepped the area and bang there was that pain again, this time I decided to stop breathing. Both nurses were shouting at me it was such a blur! I came back round and the nurse decided she wanted to do my next two injections the next day. I said No I won’t come back, just do it, but this time I decide to lie on the bed because I was so uncomfortable. Again she prepped the area, and BANG this time there was more cushion in this area and it didn’t hurt as much, next thing I knew it was done all 4!! Yay go me, the nurse said she was so proud of me!

Since my injections I am pleased to say, I have been on 2 steroids YAY, this is the first time I’ve ever been able to get past 4, getting to 3 felt awesome but 2 is just a miracle! I now have a steroid plan. 2 for another week, 1 for 2 weeks and every other day for 2 weeks. However, you experience massive withdrawal, mood swings, headaches and extreme tiredness. I have also had a bad rash from the injection as a side effect. Unfortunately I have steroid cream and strong anti histamines and have been reffered to a dermatologist and I have strict instructions to stay out of the sun 😦

I’m so happy to be making slow process and I will get there in the end, I hope. On a positive note the walk is fast approaching and this time next week I would have done it, i’m pleased to say I have now raised over £500. So a massive Thank You to everyone who has sponsored me so far, a big thank you to Ali in Mousehole shop for having a form! I am still collecting sponsors if anyone would like to give me a few more pounds I would greatly appreciate it!

There has been lots of negative press about Crohn’s disease in the news this week. My next blog will be about this, however my mission to raise awareness in a POSITIVE way continues.

Love Hayley!x

If I had a £1for every time I thought this I’d be rich!

Thoughts and Fresh Air, Thanks Luce!

Capture and Continue

Ain’t Nobody Got Time For That…!!!

Tags

Crohn's and Colitis, Crohns and Colitis 10KM walk, Crohns and Colitis Uk, Don't worry, For Crohns, Humira, Keep Fighting!!

Firstly, I would like to just say…if you don’t like blogs I highly recommend that you do not read it. Blogs are a huge interest to me and I can spend hours reading some fascinating ones. I don’t write mine to promote the fact I am quite ill, but to use it as a form of diary/online journal so that in years to come I can look back and think yeahhhh, been through worse or someone will come across this and think, awh everything will be ok even if it seems really really SHIT (literally) at the time.

I Don’t

However all you lovelies who have messaged me to say, I love your blog or I follow your blog. Thank you so much, it’s all about raising awareness and it makes me so happy when I get told ‘I love your blog”

 Thank You ❤

So here I am again.. Sally the Sicknote, recovering from a horrendous Ear and Throat infection which started about two weeks ago. Due to the use of steroids and getting the immune suppressant tablets out of system my body is unable to fight any infection/illness, so I had to phone the 111 number and see a doctor at stupid o clock in the morning! Aint Nobody Got Time For That.

Germs, germy Germs

Thankfully I am now into my second week of being off and quiet frankly I cannot wait for Monday to come around, I absolutely hate being off work. I love my job, I miss the routine and I feel so bad for letting my team down 😦

Yes Hayley, Why worry? You Loserface!

This stupid infection also delayed my new treatment……and the totes pissed me off! 😥 However it has now been scheduled for the 11th June and I absolutely cannot wait for this day to come around, it is like waiting for Christmas! I have heard that this treatment costs £400 and injection so I do feel quite honoured to be having it and I really REALLY hope it works! I’ve got to the point now where i just want to live my life normally and not feel like crap every single day! And…. wait for it…I should all being well be able to reduce my STEROIDS YAY YAY YAY F**K you stretch marks! I’m still taking each day as it comes because it just makes life easier. I’ve done 6 days back at work since my holiday and now I’m off again, ergh!! I hate sitting here staring at these four walls, but if I don’t shift this shitty infection then quite simply no injections for me. I need these I am beyond fed up!!

I have joined a few new Crohn’s and Colitis Facebook groups and have met a lovely girl from the same area as me, hope to meet up soon and swap Crohns notes. Not to offend anyone here, but it’s sometimes much easier to talk with someone who is going through similar to me.

On an extremely positive note I am at £305 with my sponsor money WOOOOOHOOOO! I am so looking forward to this 10KM walk! I feel happy thinking that this money will help someone feeling the same if not worse than me! There is always a solution sometimes you have just got to work that bit harder to find it. Thank you to all that have sponsored me so far! Im still collecting pennies so please donate any spare change!

https://www.justgiving.com/account/your-pages/Hayley-Ashworth2

I guess no body said that this was going to be easy, and as I keep learning each day it really really isn’t, but I have to remember that my health is really really important, after all you only get one shot and doing this, well unless you believe other wise!

Who said life was going to be easy?

Yep Hay, C’mon pull ya self together!

Well I guess I’ll get there in the end!

I suppose sometimes it can take more than an injection!

This is something I have to remember, to keep that bloody light switched on. I guess sometimes its bound to switch off or the bulb may need changing. I have to say these two weeks have thrown me and the bulb definitely went out but I’ve put it back on now and things will get better, and I’m hoping the injection will just give me the boost that I need.

Changing the subject so slightly, I am interested to know the following:

Oh, just one more thing, I have joined the For Crohn’s charity committee as an event organiser general pest with lots of ideas. So if you have any fund raising ideas, I would be grateful to take them along to my next meeting!

Bye for Now!

Thank you for your on going support!

Amusing…..Umm yep!

Fatigued, Flabby, and Fabulous

Tags

Crohns and Colitis Uk, Keep Fighting!!, World IBD Day

                     

I thought that it was about time I did a nice big blog update as it’s been a while and lots has happened. Yesterday was World IBD Day which was a big drive on raising awareness about the disease.  Lots of people took pictures (like mine above) and posted them to the Crohns and Colitis Facebook page https://www.facebook.com/crohnsandcolitisuk 

It was really interesting and eye opening to see how many people are going through similar if not worse situations like me. There also such a vast variety of ages. Thankfully there is one thing we all have in common which is positivity and the will power to keep fighting!                                                  

 

This event has given me more determination to raise money for the charity. So far i’ve reached 64% of my target, which I hope to exceed. The walk is 10KM in London (my favourite place, with my favourite person). I think it will be a great opportunity to meet some new people and share experiences along the way. Whilst on the subject, the Crohn’s and Colitis UK charity have supported me with a grant for the service of my car. I am so grateful for this and the care and support that I receive. 

Fatigued

As per usual I am still suffering with Fatigue, admittedly, it hasn’t been too bad just recently. There seems to be a pattern, fatigued for most of the week ok for one maybe two days if i’m lucky. I find that I normally wake up properly at lunchtime and ready for bed again around 7, but I don’t go to bed early, because I feel like I haven’t made use of a full day, and you shouldn’t give in to it as this can make you feel worse. Vicious circle unfortunately.

Flabby

Well, I am still on steroids and not the muscular variety. I have now been on them for 6months and I have hit a brick wall on 20mg (4 a day) any less and I flare right up. I learnt yesterday that I have put on a significant amount of weight which really upset me. I also have very severe stretch marks covering all of my thighs, under my arms and my hips. Most of you who know me well will know that I don’t normally give a shit how I look but at the moment I am extremely self conscious. Back the day I’d happy wonder around with no make up on and any old clothes. Now, I couldn’t tell you when I last wore a pair of jeans, I cannot get them past my knees for love nor money. Also to make matters worse, I have been suffering from water retention, quite possibly the most unpleasant side effect ever. Never have I looked so out of proportion. I also get really hot and I hope I am off them by the summer!! The other day I resembled a big red sweaty tomato.

As I said before I wouldn’t normally care but all of a sudden, everybody I’m surrounded by are absolutely stunning more so that usual. Won’t be wearing a bikini this summer. 

However, on the flip side of this these little powerful bastards are what are allowing to life my life, go to work, spend time with Lewis, spend time with my mum and generally be the happy go lucky person that i’d like to think I am. Something popped up on my Facebook the other day it was very sad, but made me appreciate how lucky I actually I am, I am still sat here, sweating my balls off typing this blog. 

                                                                           

Fabulous

Fabulous news that I am still here breathing woop woop! Grateful for that. I am starting new medication in 10days time. It is called Humira and comes in an injection form (yes I have to self inject). To start I have 4 injections, so I may reward myself with a new Longchamps bag to compensate. Sounds like a plan. Two weeks after I have two injections, two weeks after I have one, and then one every two weeks at home.

                                                                                            https://www.humira.com

                                                                                     

HOPEFULLY by mid summer no more steroids!!!! YAY I have been warned that if I am on the steroids for any longer we are going to have serious problems. I also found myself yesterday quizzing the specialist and wondering who was the doctor. It was also nice of him to tell me that this medicine is the most expensive, ah good I thought, pay for my prescriptions and my taxes so yeaaaaaah bring on the injections!!!!

Counselling is going fabulously I love it!! Work is great! I had ten wonderful days with my mum too!!  I now have clothes that fit me!!

 Best Friend Love Her!

I have been celebrity spotting, Michael Owen who we just casually bumped into at the local Chinese. Also I met Ant Anstead from my favourite programme For The Love of Cars, he sponsored me for walk too!! Huge thank you to him!! Had a great chat to him outside the local pub on sunday!

                                                                            And he was Scrummy!!

                                                       For the Love of Cars

                                                                    Hayley’s Version (Keep Dreaming Edition)

                                                                          

The only way is up!! Thanks all for reading!! Please Sponsor me!!!!! https://www.justgiving.com/account/your-pages/Hayley-Ashworth2 

 

So how do you feel about that?

Hello Everyone,

I haven’t done a blog for a few weeks now, so I thought i’d take the opportunity to do it now.

Thank you all for reading my blog about steroids, I received some wonderful comments which made me smile.

Since my last post I have been to my first counselling session which I thoroughly enjoyed. I was apprehensive as I have never had counselling before but it was great to vent out some of my concerns which I have about crohns and to talk to someone who understands the disease.

I haven’t felt well for the last few days with some really horrible dull pain, so I took the day off to sleep and re-charge my batteries which has really helped.

I have now had my immune suppressant tablets increased to 50mg and since this I have been getting the worse migraines boooo!! I also tried to decrease my steroids to 3 a day and that didn’t work out so well!!

Onwards and upwards I guess, its a new day tomorrow!

Just a short blog this time! On to my next one very soon!!

Hayley!

Ps please sponsor me!!!!

http://www.justgiving.com/Hayley-Ashworth2 

 

Woman VS Food

My life on steroids the journey so far….

I felt that it was about time I discussed my journey on steroids. The steroids I take are not the type that shrink your balls or turn you into a giant. Instead they make me look like a beached whale or Gloria from Madagascar. 

                            

I have been on steroids since November 2013 when I was admitted to hospital for my flare up. When I came home from hospital i was on 8 for a week, 7, 6, 5 and so on however when I got down to 3 it caused a mini flare up, so I’ve been on 4 steadily for the last few weeks with no hope of reducing them as the long-term medication isn’t agreeing with me. Fantastic :-(

 

So according to Patient.co.uk

A course of steroids (corticosteroids) work by reducing inflammation. The two commonly used steroids for Crohn’s disease are budesonide and prednisolone. In about 7 in 10 cases, symptoms are much improved within four weeks of starting steroids. The dose is reduced gradually, and then stopped once symptoms ease. A course of steroids for a few weeks is normally safe. Steroids are not usually continued once a flare-up has settled. The aim is to treat any flare-ups, but to keep the total amount of steroid treatment over the years as low as possible.

Although steroid tablets are commonly used, a steroid enema or suppository is also an option for a mild flare-up confined to the lower large intestine. Steroid injections directly into a vein may be required for a severe flare-up. This is what I had when I was admitted to hospital all skinny and frail) (http://www.patient.co.uk/health/crohns-disease-leaflet).

 

A few weeks ago I was given a course of Azahthoprine which is an Immunomodulator. What this medicine was (because i’m not on it anymore surprise, surprise) designed to do is suppress my immune system so it stops attacking my digestive system. All was going well no side effects-not even the sickness but then my liver function was far from right and my blood tests were the worst they had been since I had left hospital. Bye bye to that medication. 

 

After this revelation it was decided that I needed to have another colonoscopy and full one this time. This was to see if the disease had spread. I had some polyps removed which was painful and biopsies taken but the results won’t be back for three weeks. The nurse advised me that things look settled but this could be a result of the steroids. I left the hospital with a new prescription for Mercaptuprine another immunomodulator and i have been experiencing great side effects-throwing up.  So now I’m on a liquid diet for a few days until they decide what to do with me…I could give them a few suggestions.

So I still remain on steroids and in all honestly I am beyond fed up. Beyond fed up of feeling round, my face resembles the moon, a common side effect. My stomach is like a bottomless pit and i’m always hungry. My body temperature is out of sync i’m always really hot. Finally mood swings, I’m either happy, feeling very sorry for myself or angry. Now the anger isn’t normal, I get so frustrated and just loose my temper not my character at all ( I don’t think, you wouldn’t want to be on the receiving end as the lady from dominoes experienced this). 

People have no idea how I truly feel at the moment and I can only live in the hope that it will get better. I can no longer pull a pair of jeans past my thighs so it’s leggings all the way. I can only hope things improve before the summer I just want to look and feel like me again. Heres to the next course of medication I guess….

 

 

 

Stressed…..My Arse

Welcome to my first blog and quite honestly I couldn’t think of a better and more suited title than this one.

It was April 2012 when all of sudden I had really bad diaroheoa that just wouldn’t go away. I generally felt really poorly so I went to the doctors. After a number of tests my first colonoscopy was arranged as well as my first consultation with my first gastroenterologist. My first gastro was convinced i was “stressed” and was certain that I had IBS but she arranged the colonoscopy to prove she was right.

The date to the colonoscopy soon rolled around and the prep was like nothing I had ever experienced before. You feel incredibly empty after this and very hungry! This procedure allowed me to loose any dignity I have ever had.

The results of the colonoscopy showed very little inflammation and again the answer was it is most definitely IBS. Now at this point I had lost all energy and will power to argue the fact of how poorly I felt on a daily basis. Having diaroheoa every day just became normality for me.

Unhappy with the results I had one more final investigation a Barium Enema, this was a really long procedure and was truly horrible and painful and something I hope I never have to go through again but probably will now I have Crohns.

The results of this examination were normal and the conclusion was IBS and to go back to the doctors if anything changes.

We are now well into 2013 in terms of this blog and going to the toilet 3 times a day or more was just normality for me until things started getting worse, I started developing pains in my right side all the time and generally feeling really poorly. I had moved to Hertfordshire in January 2013 and the doctor I saw told me I was stressed and to just take Imodium. Hmmmm………

In the summer I first started to notice blood in the toilet and this is quite the most scariest thing I’m yet to experience I life. I thought it was my imagination at first or something I had eaten but this really wasn’t the case. Now well into September I had started a new job which involved more travelling and a walk to the train station each morning, this became harder each day which the increasing pain in my right side. I went to the doctors but this time I saw a different doctor. She took one look at me and said Miss Ashworth there is something really wrong with you. She prescribed me some strong painkillers and sent me straight away for blood tests and told me to get in contact with a specialist nurse.

The painkillers helped but things went to a whole different level of being poorly, I couldn’t eat anything it was just going straight through me, i felt awful. I was also losing blood more frequently and I couldn’t stop it. I went back to the doctors and was signed off for a week originally and then a further four weeks.

During this time I had contacted my specialist who is AMAZING who suggested I try a liquid diet for a few days to ease the inflammation which unfortunately didn’t help me. A day i’ll never forget Monday 18th November 2013 when I was admitted to hospital as I couldn’t control the bleeding any longer and no longer look after myself at home.

Monday 18 November 2013 was when my life changed. I was admitted to hospital and put straight on a drip as I was so dehydrated. On the Tuesday I had dehydration sickness but luckily I got to see my new gastro who took one look at me and my blood test results and put me straight on an intravenous course of steroids and told me that I either have Crohn’s Disease or Ulcerative Colitis. I felt the effect of the steroids instantly and became very very hungry. After an afternoon of sleeping I woke up wanting something to eat, I ate my first meal and it didn’t go through me! Miracle!! Later that evening I was given my prep for my colonoscopy so the dinner soon came back out much to my disappointment.

On the wednesday I had half of a colonoscopy as I was too poorly to have a whole colonoscopy and the gastro who done this told me that I was extremely poorly I could believe I had been living my life like this. The colonoscopy showed lots of inflammation and ulcers and wasn’t very pleasant to look at.

The week continued and I was still in agony with sleepless night which didn’t help me. On the friday I was assessed to go home but because I was still in so much pain I had to stay in and have an ultrasound scan. This was such a painful unpleasant experience which revealed I stones in my Gallbladder along with an infection. Along came the intravenous course of anti biotics….wonderful.

Finally on the Monday I was allowed home on the promise that if I became unwell I had to go straight back into hospital. It was great to be at home although I had some horrendous nightmares at the start waking up not knowing where I was and expecting to have a blood test. I also felt incredibly depressed (hate that word at the best of times) and it took me a while to get back to my normal self.

On the 9th of December 2013 I was diagnosed with Crohn’s Disease which to be honest I was expecting them to tell me that. I now face life on long-term medication not knowing what life is going to through at me from one day to the next, makes it all the more interesting I guess. Someone has thrown me this challenge and I just have to deal with it.

I’m still on a high dose of steroids as things aren’t quite right and they help whilst my body gets use to the Azathioprine. I also take a daily anti-depressant which has really helped.