Dealing with everything...

Hey guys I hope you are all doing well. So I am beginning my ninth week in isolating here in the UK as I had received my letter at the end of April and it has been a real struggle the last few days. I lost one of my guinea pigs on the 20th May. He had passed away in my arms after a seizure but he had been suffering from lots of coughs and sneezes that morning and the vet said if he got worse to ring up again and see if he could squeeze him in for an emergency but he did not think it was serious. So Pumpkin grew his angel wings that afternoon.

This is our beloved Pumpkin

So for 3 weeks our beloved Squeak had no one to torture him and popcorn around the cage with him apart from his teddy bear Rudolph which little miss kindly gave him to keep him company until we got him a new buddy to keep him company. So George and Wilfred came and joined us as I could not leave George behind as he would have missed his brother even though they have been separated because of bloodshed. The love for these boys and my daughter is too much and I would miss them a lot even though they drive me all mad at times but they keep me going every day. They all help me with my mental health in some form but if I wanted to cry I cannot let little miss see me cry as it makes her very sad.

George, Squeak and Wilfred

While this had been happening I had started talking to a couple who I have taken like my own flesh and blood big brother and little sister. I started talking to my brother at the end of April and it was through a friend who started up her own family on tiktok. She had added me as I had been struggling with my mental health and to be honest I have been struggling a lot and not been telling anyone much apart from to my GP and social worker. Both my brother and sister has been through a lot in recent months.

My brother had been speaking to another person from the family on tiktok and they had been speaking for quite some time and it had started with a text here and there and then a call here and there and when I started speaking with them it had been going on for weeks every day and night 24/7. I had come in and she was controlling him and had him under a spell and I somehow managed to break that spell. I do not know how but I did and now he is trying to get himself better mentally, physically and emotionally as she had basically broken him to pieces. From that evening on I have been there for him and now he goes to sleep at night time and wakes up in the morning like a normal person. He had been subjected to continuous lies, controlling, manipulation and narcissistic ways for five whole months. She was acting like my ex (daughter's dad) and her spell had been broken as I got fed up her treating him like a piece of dirt like my ex had done with me but I will talk to you about that in another post and no matter what he done even threatened to leave her and no longer speak to her she threatened to take an overdose of her medication or even try to drown herself in the bath (which she had apparently done before I started talking to them). So one day I just snapped and told him he was free and she will not be talking to you again and he has been free since but all her lies and crap has come back toppling down on her head since. If you ever met this girl online please do me a favour and do not ever talk to her as you are going to get stuck in her crap and she will not let you go as she will never change as we have tried and tried but you just cannot change a leopards spots.

This is one reason why I am not sleeping properly as I am scared she will get her claws into someone else and cause even more trouble than what she has already with about 20 people already with her continuous lies and everyone has had enough of her and now they have banned her on all their social media accounts and gaming accounts. She has about 3 of every social media account and she will tell you lies into why she has them one being stalked by someone else but it is really so she can spy and manipulate other people not because she is being stalked as we have recently found out 99.9% of her stories have actually been made up and I am not joking. She actually lied about being pregnant to one of her ex's and this killed me as I had miscarried last year during little misses Halloween half term break I could actually have lost it with her but I found out after I had blocked her.

This is the girl and she goes by many names as she has multiple social media accounts but her real name is Megan

My little sister had coronavirus a few months ago and had fought it so hard and overcame it but had then been admitted to hospital again with other issues such as fibroids, ovarian cyst and then been diagnosed with Crohn's disease and an issue with her heart. She has had six operations so far and not to do with the Crohn's but with each one I have been hanging on and hoping she would be ok. After the sixth one she could not handle the pain so they induced her into a coma and since then I have been scared so much so that I have not been able to sleep much and my anxiety has got worse. I am being woken up with everything in my body just making me wake up out of a deep sleep and this has been every night since Thursday when they put her into an induced coma as she was on the strongest pain killers possible and she was still in agony. So we are on day 4 on her being in an induced coma and it is killing my brother as well as me. I am just about managing as I am keeping myself busy with my crocheting and I am trying to keep him busy as well so he is not worrying about her as he is 1600miles away from her and he just wishes he could be with her every minute of the day but he is struggling as he also has Crohn's too. I just wish I had a magic wand at times as I wish my little sister was not struggling with all these health problems as she is still young and has her whole life ahead of her. I also wish my big brother and little sister were together and not separated by 1600miles as she went back to her home country a little while after her mum passed away and also went home to look after her Auntie.

It has been a tough few months for all of us but we are slowly all getting there and when my little sister is better after recovering from her six operations she will eventually have a much needed heart operation but she needs to be fully recovered from the other operations first to improve her chance of survival as she is extremely weak at the moment. Even though the operation my sister needs it is a straight forward operation but it does carry a lot of risks and I mean a lot and knowing this is also waking me up during the night as I keep having dreams that she is not going to make it through the operation. I know I have to stay positive as it may not happen and I also need to keep strong for her as she has months of recovery after she has the operation and then she needs to get signed off by the doctors that she is fit to fly so she can come back home where she belongs but we will now be looking at after Easter next year all being well with hopefully no more Coronavirus lockdowns due to more outbreaks but we will have to wait and see what happens with that as we need to figure out how to stop it from spreading as China has a second wave of the virus.

Now talking about the Coronavirus it has actually scared the hebbie-jebbies out of me as China has over 80,000 dead after the first wave and with the second wave now hitting them and here in the UK we have over 60,000 apparently at the moment dead. It is very scary stuff from what I have heard about it especially the illnesses which the kids can get. I am scared that if I catch it or my daughter catches it that I either leave her behind with her controlling, manipulative dad if I cannot fight it as I am classed as extremely vulnerable and now I have to isolate until 1st August at the moment. If little one was to catch it she takes weeks even months to fight off a common cold as her immune system is weak as she has a few other issues on top of her asthma like myself but it can keep me up at night as I am worried if either of us catches it. I try not to think about it as so many people across the world has fought it but some are still suffering with issues afterwards like heart issues and they were fit as a fiddle before they caught the virus but I try to stay positive.

Well this is just a little bit about me trying to deal with things lately there are other things on my mind but these are just a few things that has been affecting my mental health. If you are struggling with your mental health with the coronavirus situation or with your Crohn's or other health issues or even controlling and coercive behaviour please ask for help and talk to someone like a friend, family member, doctor or even a therapist they are all there to help you just like I am there helping my big brother and little sister and they are there for me.

Look after yourselves mentally, physically and emotionally.

From remission to flaring

After being in remission for nearly two and a half years I had started to flare up again with my Crohn's disease in the middle of March. I had just thought I'd started flaring up due to the stress in my life with work, home life, organising a birthday party for Alisha, dad's and granny's anniversaries and people making judgemental comments on my life and how I raise my daughter.

Well my period of remission ended just after my birthday in February. The stresses of life got to me and it got to me really bad that I was in so much pain on a daily basis and I was crying myself to sleep. There was only one person I could be happy with and not suffering in any pain, yes and I could not be with this person because of the idiot I married. So all my normal flaring symptoms returned slowly so I just ignored them and never let my IBD team know and they were not happy with me for not keeping them in the loop. I came off my medication as I could not get through to them as I was getting really bad pains in and around my liver and these pains were not like any pain I get when I have issues with my gallbladder and it was the exact same symptoms I had when I was pregnant with Alisha and I was told to come off my medication back then as my liver was inflamed and my LFTs were raising too. I usually hate going to see the doctors or go to the hospital so I just was like ok no one is answering me so I will just say come off them and it was a bad idea as I started to flare-up within a matter if a week. I had to do it as the pain around my liver was really bad that I nearly passed out in work one day as my pain killers did not work and the pain just got really bad. Some people say I am stubborn like a man when it comes to my health. Sorry dad and granny I get that from you both as I am extremely stubborn just like you both were when you were alive. 

From every day stresses I have tried to get myself through the day without having to make umpteen trips to the toilet due to the fact that my normal toilet trips was every other day to no more than three times a day to a flaring state which was increasing my toilet trips from four to twelve times a day and jumping from type 3 to type 6 or 7 on the Bristol Stool Chart. I eventually tried to get in touch with my IBD team in the middle of March but with no avail I ended up going to my GP and telling them. They had said I was definitely in a flare-up with my Crohn’s disease and I had to wait for her or my hospital team to get in touch with me to decide what the next step would be. Two days later I had my nurse ring me when I was struggling in work and I was booked in for the next available appointment which was only a few days after speaking to her.

When I got into clinic my nurse got straight to the point. They asked me why I had stopped my medication without the consultant’s decision in my treatment, told them not to have a go at me as I did leave a voicemail. So she moved on and talked me through my plan of action to get my back on the mend again and into remission. First step was steroids, I said ok but please do not give me prednisolone as it did not agree with me and with my line of work I could not risk having really bad mood swings with customers if I was having an off day and the prednisolone making my mood worse. She then talked through my tests which was umpteen different blood tests including LFTs, U+Es and gamma. I was to do a stool sample for a calprotectin test for my inflammatory markers; have an MRI scan and colonoscopy. Then after my results come back then the decision regarding my medication would be made as there would be different ways available to me one being put back onto the medication I was on which was Allopurinol and 6-Mercaptopurine but at a different dosage of each or there were a few other different drugs I could try like Infliximab, Vedolizumab or Ustekinumab. They really do not want to take me to theatre and give me a stoma or perform a resection so that would be the worst case scenario for me. So off I went home and had a deep think as it was a lot to take in all in one go. My nurse has always known I like to know everything as I hate being kept in the dark or not knowing everything which is to be thrown at me or not thrown at me. I got a call from my nurse the next day to let me know that my prescription was signed off for budesonide by my consultant and was in the hospital pharmacy ready for picking up when I was able to and she also let me know that all my tests and scans were ordered and my appointments would be in the post soon.

Since being in clinic with my nurse I had kept in touch if I was having any issues with increased pain or increased frequency as it would mean that the steroids were not working so she would have had to change my budesonide to prednisolone. But about a month into the course of steroids and my symptoms have reduced as I am now only going to the toilet no more than eight times a day. The pain and bloating is still bad but the pain has decreased from feeling litke I was in labour again to feeling like I have been stabbed and the knife being twisted in my abdomen. The bloating can be really bad that when I am in work my shirt buttons are being stretched a lot that it looks like I am heavily pregnant and about to pop and when it gets really bad the pain with my skin stretching makes my belly hurt again. I have also limited appetite and when I do eat even with being on steroids my three year old daughter can put me to shame as she eats more than I do and it is astonishing how my body can just survive off that little food each day. Well that is where my energy drinks, coffee, chocolate and wotsits and lots of sugar in sweet form comes in as that is how I ended up managing my pain in my upper right and sometimes upper left quadrants as solid food some days hurt like hell eating. Since trying to eat more liquid food or soft foods my pain has decreased a lot as when it was really bad I nearly passed out in work on a few occasions and scared three of my colleagues as one had asked me what were they to do if I had passed out as not one of them knew first aid as I was the first aider on duty in most shifts unless it was the weekend as there were always more than one manager on shift. So I taught them all what to do if there was an accident involving a first aider or a first aider was not on site. If I had passed out at home I have been teaching Alisha what to do if mummy collapsed in pain and I hope she will remember if she ever needs to ring the emergency services to get an ambulance for me.

Since my flare-up started to get worse my mood got worse as well. I was grumpier and snapped a lot quicker than normal with anyone if they annoyed me. I am crying a lot more also especially if I am alone or not keeping myself busy. People I loved noticed it and it one someone close to me that knew I was flaring with my Crohn’s before I went to the doctor about it as he sort of knew my tell-tale symptoms when I just kept denying it. I had a love hate relationship with food and only craved certain food which was just junk food full of salt and sugar. Anything else I turned down even if it was all made especially for me by a friend or family member I couldn’t stomach it at all unless I was in the right frame of mind as certain smells made me feel sick just like my first massive flare which lead to my diagnosis. If I was in pain my mood was horrible too as I could not deal with it as most of the time my pain killers failed to work which was a nightmare if I was in work.

Managing with work and home and daily tasks was just a nightmare and still is at the moment. Apart from Alisha making a right mess like a normal toddler would I could not manage daily tasks properly. I ran out of spoons before midday everyday. During a flare I seem to have a lot less energy and mostly need a mid-afternoon nap every day. I am still struggling as my fatigue and pain can be bad some days that I literally have to be pulled out of bed in the morning and then I end up in bed for an afternoon nap or lying up on the sofa most of the day unable to do anything and running to the toilet is a struggle. Some people think I am mad for kicking the father of my child out of the house as I no longer love him (happened about a year ago when this happened but I did not tell anyone until recently as I have been told by many people it is a huge mistake. It might be at the start but no it will not she will have contact but it was stressing me out which some people have said it has contributed to my flare-up as well as many other daily stresses. Working around my tasks on a daily basis I need to spread myself a bit and if I need to I need decrease my daily housework tasks then so be it as I cannot push myself everyday as my body is struggling as it is trying to heal itself but over exerting myself delays recovering and healing time. There are times in life you need to prioritise things and recovering or healing is always number one everything else can wait or put on the back burner for a while until you recover. I have learnt you always need to put yourself first if you are alone with no kids. If you have kids they are joint first with you as well, as they will need you afterwards to read bedtime stories; make delicious treats and teach them to do new things like bake yummy food. I know Alisha is my main rock and she helps me try and forget my pain and tears but it is not always enough as she cannot talk back to me about my issues but the best thing she can do is give me kisses and cuddles and that is all I need to help me get through the day. Sometimes talking to an adult helps too and this is where you need a friend who understands and listens but also does not judge you because of the pain and the symptoms you have. That one friend can be anyone you trust a partner, a friend or a fellow sufferer. As long as you trust them and they are understanding and do not judge you or say they do not believe you they will help you through a flare-up or any issues you face along the way.

When I get all my tests done and results back I will update you on what happens next. Until then I will just keep muddling through my daily tasks as best as possible and see what happens next for me and my Crohn’s journey.

I am sorry I cannot be the friend you need me to be

This blog is not just for you but I needed to write it for myself too.



I know I am not the friend I once was due to things needing to have changed.



I know I have not been the greatest friend recently, I have been distant, I have been selfish and that is definitely not friendship.



To be truthful I suppose it has been easier to deal with all my health issues by myself. I know you have tried to understand, you have tried to be there but unfortunately I do not think anyone will truly understand it all.



I know you feel a mixture of thinks like disappointment, anger and feeling hurt when I let you down. I really wish I could say I would like to make it up to you but I am sorry that would be a promise I cannot commit too as I might let you down again. 



There are days where I struggle to even get out of bed, holding any sort of conversation is draining and the simplest of tasks like going to the toilet exhaust me.


I am not ignoring you, I just cannot deal with life on those days. 


My illnesses are preventing me from being a better friend to you, I do not resent that, it is the cards that I have been dealt with for my life.



I hope one day we are able to start where we left off, making new memories and experience life together.



For all those times I have had to cancel plans, for all those times I have had to let you down, for the times I have not supported you, the times I have been a bad friend…



Thank you for trying to understand…



I am sorry for not being there for you when you need me. I am sorry for everything including being a bad friend. 

What people with chronic illnesses wish family and friends knew

Living with any chronic illness whether it be arthritis or Crohn's disease we all think nearly the same and wish our family and friends knew about how we feel.  YES, we have feelings too just like you do. 

1. We feel grief over the life we were living as we might have lost. 

After a life event of being diagnosed with a serious or chronic illness the "life stress scales" appears.  It is considered a grief producing event just like any other major life losses like a relationship break down or a death.  Before I was diagnosed with Crohn's disease in April 2013 and Fibromyalgia in May 2017, I had no idea that people who were diagnosed with ongoing health struggles were grieving just like when a loved one passes away.  After my diagnosis with Crohn's disease I had grieved for the majority of a month.  I had thought it would be the end of the world but it was not but there are things I cannot do like I used to unless I am in complete remission.  With any chronic illness we grieve over not being able to be productive as we once were as we lack energy and I myself also have less motivation.  We also lose friends as they do not know how to support us properly or they themselves are scared of losing us to these horrible illnesses; the loss of ability to do our favourite activities, I loved to be able to sit all day doing crafty stuff but now I cannot sit and latch hook a rug or do a cross stitched masterpiece; and the loss of independence as some people are living with debilitating stages of the illnesses and have to rely on careers or helpers to do things for them.

Grief comes in waves and can arrive unexpectedly.  One moment we are accepting all the changes in our lives then the next minute we are full of sadness.  The grief can be triggered by a simple interaction.  It can be similar to loosing someone you love, for example I went home for a day to collect my daughter from her Nana's and everything has changed at my old house since dad passed away and I had a massive wave of grieve overcome me.  I had to work extremely hard not to breakdown into floods of tears as I found out in my counselling session that I have not accepted my dad's or granny's passing yet. YES I know it has been over 2years since my dad and 1year since my granny passed away.  To be honest I have not had a time to accept their deaths as Alisha was born 9days after dad passed away, my Crohn's flared up a few weeks after she was born and my liver became inflamed so I had to come off all my medication until it settled.  After it settled I was battling my anxiety and depression as well as financial issues so I had to go back to work again. Then the March the year after my Granny fell ill and just 8days before Alisha turned one my granny passed away.  Unlike my dad I was able to say my goodbyes and see her body before the funeral even though I could not face going to the funeral with Alisha and letting her see me in floods of tears. 

The grieving process with my illnesses on the other hand I am scared of losing things again as I know it will be as intense as losing my only brother at 6yrs old, losing my dad before his first grandchild was born and losing my last grandparent who I was really close to as we had seen her like every week or every fortnight since I could remember until I moved away to Manchester.  As odd as it may sound I am scared of admitting I am scared of losing friends again because I want to have normal friends that are there to support me as well as not normal friends who understand what I am going through.  Yes people come and go but after losing all my really good friends from school and university as we all went our separate ways after we finished I am just scared of losing my normal friends if my illnesses prevent me from doing what I love the most when I am having good days and that is spending time with them and Alisha and making the most in life.  After seeing the way dad was after his first stroke at the age of 8 (to be precise on my 8th birthday) and the way it affected him I am scared of being dependent on someone to look after me and to help me. Yes my bad days Alisha helps with some of the housework like tidying the living room up and putting the dirty washing in the washing machine but I feel bad even though she loves doing it and she always gives me hugs afterwards as she knows it is helping me out and I always thank her for it afterwards but I have always been independent from an early age wanting to do things myself and paying for things myself. 

2. We can feel like we are letting you down even though you repeatedly say we are not. 

I have a couple of really close friends who I do try to see at least once or twice a month. They all say it is ok if I am not feeling well enough to meet up with them and should cancel. When that time comes I feel really bad on cancelling our plans as I feel like I am a failure even though they say it is ok and my health comes first. Yes I believe them when they say it is ok and not to feel bad but it is not that I feel bad for not being a good friend always having to take each day as it comes because of my illnesses. 

This feeling of letting loved ones down often results in constant apologising for being in agony or being poorly even if it is not necessary to do so.  I quite frequently apologise to my friends, family and even my little girl for not being able to stick to my word and taking part in activities even though I am having a bad day with either my depression or Crohn's disease or the Fibromyalgia even though most of them expect me not to overdo things and go beyond my limits even though I keep pushing myself they do not want me to.  It is now a habit which makes me feel better to apologise to everyone for letting them down.  It is a way for trying to tell them that it is unfortunately out of my control whether my body is going to be having a good or bad day and with living with a number of chronic illnesses it is very unpredictable and if it is one of my bad days it is not any fun for either of us. 

3. It can be embarrassing living with chronic illnesses

The main reason why people are having a lot of embarrassment is due to them setting unrealistically high targets and expectations for themselves and then they judge themselves negatively when they cannot meet those standards.  We really do not have to look too far to see the unrealistic and high expectations and the negative self-judgement.  Yes I am one of many who set unrealistically high expectations and targets for myself especially as a parent as I see I had a bad childhood not the worst and definitely not a good one but that was down to many reasons such as my dad having a heart attack and stroke during my childhood, my only brother who I was close to passing away a few months after my sixth birthday and being bullied throughout the majority of my school years because of the way I looked, talked and because I was in the top 5 high performing students in my year in high school.  I set myself really high standards of how I should be with Alisha and what she should and should be doing.  YES! I know children all perform differently but I am not on about developing as a child and what she should be doing for her age.  I am on about the way she should be acting, how long she should be sleeping, etc.  I have embarrassed myself on a few occasions when I have had too much crap on my mind (pun not intentional) and I did not realise she had been misbehaving with other family members and also walking with her toes inwards every so often that she kept tripping herself up when she was walking and running.

My family and most of my friends have accepted my illnesses but I still keep finding myself being embarrassed in front of them about things related to them such as my sore belly due to cramping and wind or asking for help to do things as I have no energy to do it like cleaning the house with me or playing with Alisha.  I still get embarrassed even though I have been suffering for years and many of them I had met after I had been diagnosed with Crohn's disease but not many after my diagnosis with Fibromyalgia.  My family have never really understood me and some never have come to terms with my diagnoses but I have a few really close friends who understand me and I think they have accepted my illnesses too as they are still here supporting me every day even though I have really bad days but some of them can read me like a book and can tell when I am hiding behind my smile.  These are the friends that I would miss the most if they were to disappear or walk out of my life as they have been the biggest support I have since my dad and granny passed away.  However, I do feel guilty when I have to let them down because I am too sick to get out of bed.  I feel guilty when I have to break my commitments due to not feeling well.  Even though no one has said that they are annoyed with me for cancelling plans with them I still feel guilty for letting them down. 

Being ill can also be embarrassing now more than ever as we all have to be fit and healthy including mentally fit and healthy.  There are things in my head that should stay private but when I started my counselling sessions she said nothing is to stay private so I could talk things through with someone which is why I always had mental breakdowns as I always locked them things up and never talked to anyone about things not even my closest friend or my family.  I always have seen it as they are for me to know and no one else as they can be very private.  We keep many details of our lives private why not chronic pain and illness?  Most of us unfortunately cannot hide our medical conditions from everyone else as we have to explain to our loved ones why we cannot do this and why we cannot do that, why we have to cancel plans at the very last minute, why we have to sit down suddenly or leave a gathering early.  Instead of keeping it all private we have to talk about it and sometimes it can be embarrassing or frustrating especially when they do not understand what all it entails. 

The most important thing everyone cherishes is independence that comes with good health.  We find it embarrassing to have to continually ask loved ones to do so many things for us such as cleaning, shopping and supporting us financially.  There are a few people I know who are forced to move back into their childhood homes because they are unable to look after themselves or they can no longer afford to live independently.  Having to tell others that you have had to move back into your parents’ house again can not only be embarrassing but people can feel ashamed of having to admit they needed help from their parents. 

The Diagnosis....

Just before March 2013 all I could stomach was soups, liquids and Super Noodles. Just before I went home for a week I had went to the doctors as I was not feeling well, this time it was a Urinary Tract Infection (UTI) but they thought it was so bad that it was near my kidneys. So I was put on a course of antibiotics. When I went home to see my family and friends during the first week of March all I got was are you eating properly or are you taking laxatives. The answer was no to both.

My food for the majority of 6months before my diagnosis.

I had lost just under 4 stone at the time. When I came back I still had the UTI but was feeling dizzy and faint. Within a space of two weeks I had visited the Accident and Emergency 3 times. The first time I was put on a fluid drip and send home with yet more antibiotics. The second time I was hooked up to an ECG machine and sent home with nothing but told to rest up and take it easy. On the third time it was a student doctor that had said that I was at all not well and should not be sent home like the previous times, as I had hardly any strength to even stand up on my own and I was being sick.

At this stage I had lost just under 4.5 stone and the student doctor said either ulcerative colitis or Crohn's disease. I am glad he was there that day or I would probably have still not been diagnosed or either no longer here as I had been getting heart palpitations and he had said it was a sign my body was either shutting down or could not cope no more with the rapid weight loss. The third time of being in A&E I was transferred up to the Acute Medical short stay ward. In the morning I was moved to the Acute Medical Ward for Gastro and Liver care as there was a bed free for me.

In the Gastro and Liver ward I was poked and prodded for 4 weeks. Within the first two weeks I had lost more weight just bringing it to just under 5 stone in total. My consultant and his junior doctors had helped to gather all the information from me and came to a conclusion it was more like Crohn's disease than ulcerative colitis. The only reason which lead to make their decision was the numerous blood tests they had done and all of them showed different vitamin and mineral deficiencies. I was put on a number of different IV drips to boost my vitamins and minerals which I was deficient in. During my stay in the hospital I had a number of tests done to try and see what was wrong with me such as, ultrasound of my liver, kidneys and stomach, endoscopy, colonoscopy and MRI.

My home for just over 4weeks.

For the Ultrasound I was not allowed to eat anything for 6hours before the scan so, they could get a better picture of what was going on. The endoscopy, colonoscopy and MRI I had to drink a disgusting laxative which had made me sick. But because I could not keep it down they had it changed to another one which went down a bit easier but closer to the test times I was really sick so they had to give me fluid through a drip and a paracetamol drip as I was in so much pain.

When they were carrying out the endoscopy they could only find mouth ulcers and ulcers at the back of my throat which was what was causing it painful to swallow anything. In the colonoscopy they had found a lot of ulceration and inflammation in my large bowel. But the consultant said where I was getting my pain in my stomach would not be caused by where they found the Crohn's disease so he ordered a MRI scan to see if it was in my small bowel. After these procedures he had said it was definitely Crohn's disease but he wanted to see how far it had spread. He had also said something about getting put on a drip when I returned to the ward but I was not paying much attention as I had been heavily sedated and was drifting in and out. I cannot even remember getting back into my bed on the ward but I was told that I was helped back into bed as I was near enough fast asleep. I was woken up to be told my dinner had arrived but I fell back to sleep as the sedation had not worn off by that time. It was near midnight I had woken up again but because I was slightly hungry and extremely weak so, I asked for some toast and butter and Lucozade. One of the nurses actually went to the canteen to get me the Lucozade as I could just about make it to the toilet without any assistance so, they did not want to risk letting me go on my own to the canteen. Once I got some food into me I felt a bit better. The next morning I was put on antibiotic and steroid drips for 4days. On the fourth day the plaster over the cannula made my skin come out in an allergic rash so, the nurse asked the doctor could it be taken out and be put on my course of tablet antibiotics and steroids a day early. Thankfully they said yes cause no matter who puts the cannulas in makes me come out in massive bruises. I had also been started on azathioprine as well at 100mg as the dosage goes by the weight of the patient. Also my consultant was unsure of whether or not to start me on humira but would make the definite decision when he got the results back from the MRI scan.
 
A week after my endoscopy and colonoscopy procedures I got disturbed eating my breakfast which I had stolen off the breakfast cart before they started doing the rounds at 8.15am, I was rushed down to the MRI scan. It was a complete waste of time eating my breakfast as I was given more of the disgusting laxatives which I was to drink within an hour before my slot. A few days later I was told that the Crohn's had not yet spread to the small bowel. This was a good thing as he had decided not to start the humira just yet.

Crohn's and me =)

My name is Steph, I am a twenty-one year old University student going into my final year starting in September, I also happen to have Crohn's Disease.

My nephew and I in Spring 2009

Well what is Crohn's Disease?

It is described as an inflammatory bowel disease (IBD), which causes inflammation and ulceration of the gastrointestinal tract from your mouth to the anus. It is most commonly diagnosed between fifteen to thirty years of age, but can occur at any time. It is also said to be genetic (I must have been the unlucky one in my family as no one else has Crohn's Disease).

At present they do not know what causes the onset of the disease which means there is no known cure. Researchers think they have a link for Crohn's disease which is environmental, immunological and bacterial factors, but are still not one hundred percent sure what actually causes it. As there is no specific cure for Crohn’s the doctors can only help us ‘Crohnies’ by medication, surgery or helping us find a certain diets or lifestyle changes (which is different for every person with Crohn’s Disease) to help us stay in remission (when the symptoms are not prominent). If we do not stay in remission we have flare ups (when the symptoms are prominent) which is not very pleasant at times and can mean hospitalisation if the flare up is really bad.

With Crohn’s Disease simple things in life such as; going to university, going out with friends, getting out of bed and eating food becomes complicated. It is not just the disease which us ‘Crohnies’ have to deal with, it is the side effects of the medication as well as being more vulnerable to infections. However, the worst part is the sheer pain which we can get when the disease is active, and it is not just the abdomen it can be any part of the body for example, joints.

I have tried talking to my friends and family about my disease and they think life for me is easy like any normal person but I am hiding the chaos going on underneath on the outside. This is because most people think Crohn’s is like irritable bowel syndrome (IBS) and I can eat and drink everything I like, but I wish it was that simple.

Due to this I have started this blog to help people understand what us ‘Crohnies’ can go through on a daily basis and create a personal insight for those who wish to learn more about the disease, as well as raise more awareness of IBD.