Iron and IBD

Low iron or a lack of it commonly causes iron deficiency anaemia. This type of anaemia leads to a reduction in the production of red blood cells and this can mean a reduced amount of oxygen being carried around the body in your blood. Iron deficiency is a common complication for people who suffer from inflammatory bowel disease but it is very easily treated.

The most common symptoms of iron deficiency are:

·         Tiredness

·         Lack of energy

·         Heart palpitations

·         Pale complexion

Less common symptoms include:

·         Headaches

·         Tinnitus

·         Altered taste

·         Itchiness

·         Sore or abnormally smooth tongue

·         Hair loss

·         Desire to eat non-food items like coal

·         Difficulty swallowing

·         Ulcers in the corner of your mouth

·         Spoon shaped nails

If the iron deficiency is left untreated it can lead to:

·         Increased risk of infections

·         Heart and lung problems

·         Restless leg syndrome

Iron deficiency can be diagnosed through a blood test by your doctor.

People who suffer from IBD who lose blood and also iron through bleeding in their stools from their intestines are usually at a higher risk of developing iron deficiency. This can happen in both people who suffer from both Crohn’s disease and Ulcerative Colitis. People with Crohn’s disease in their small intestine in the duodenum are at further risk as this is where the iron is absorbed. If this is where you have your Crohn’s disease you might have an issue absorbing the iron. Some people with IBD and on a restricted diet due to the foods they can eat will not be getting enough iron through their diet. 

Most people with iron deficiency will be able to take and iron supplement orally from the doctor on a daily basis. Others will need to be given iron intravenously. This will help to boost the iron levels in your body. 

Most people find they have side effects from taking iron supplements such as cramping and constipation. 

You can also help boost your iron intake through your diet by eating foods like:

·         Dark green leafy vegetables like kale or spinach

·         Brown rice

·         Pulses and beans

·         Nuts and seeds

·         Meat, fish and tofu

·         Eggs

·         Dried fruit

·         Also some cereals and bread are also fortified with iron.

If you cannot eat all these just eat what you can tolerate to help boost your iron. I know I have dips every so often that I need to get an infusion every so often and it means 2 trips to the hospitals day case unit for a few hours. I do try to eat what I can to prevent me from having to get an infusion by eating the foods I can tolerate like beef, fish, eggs and cereals.

“Worst case scenario”

In my last post I mentioned about getting an operation being the worst case scenario. This is always what my IBD team has said to me when I have a scope done or they change my medication. I have many friends who suffer from Crohn’s and Colitis who have had to have a stoma either an ileostomy or a colostomy. The majority of my friends have never said it is the worst case scenario as they have got their life back. The only thing they have to worry about is the bag popping off and soiling their clothes which is rare if you have a bag that suits you and you use all the special seals and bonds to keep the bag stuck to your skin. Or the bag fills up too quick that they need to run and find a toilet to empty their bag. 

I am in the middle of the biggest flare up since I was diagnosed in April 2013. I have been late once to work because I needed to go toilet yet again before I left the house then got stuck in heavy traffic behind a road traffic accident on the way I go to work. I have also soiled myself on the way to work too which I am not happy about but I was prepared that day as I was carrying a spare change of work clothes. Now this is what the IBD teams should be saying is the worst case scenario not getting a life changing operation.

I have come up with five of the worst case scenarios for anyone with IBD.

1.  NO toilet paper …this is definitely number one as it is the worst scenario you can have happen. If you are at home you might have a massive stash of toilet paper in the house but what if you run out completely or you are using a public toilet and there is no toilet paper at all in the cubicle. A massive issue is at hand how are you going to wipe your bum

2.  NO toilets … either the establishment has no toilet or there is a queue of other customers waiting to use the toilet. Either way if you are needing the toilet urgently it is going to end in an accident.

3.  Dirty toilets … from making a mess yourself and having to clean it up before the next user or the previous person did not clean it before they left and there has been no toilet checks for a while by the cleaning staff it can be a horrible task to clean the toilet really quickly if you are in a rush out and about or even just at a friend’s house.

4.  Clogged toilet … this is a really common thing to happen to anyone. The best way to prevent this from happening is to flush the toilet after you have finished doing your business then after you have finished wiping. If the toilet water do not go down do not flush again as it is a sign that the toilet will overflow as it is clogged up already.

5.  Bathroom accident … this can happen to anyone of us as it can just come on all of a sudden that we need to run to the toilet and we cannot always get there on time to use the bathroom. If you do not have an emergency kit already it is worth the 10minutes or so to put one together with spare underwear, wipes, gloves and other bits and pieces you might need to use if you have an accident. If you look further down my blog I have a post regarding emergency kits. Mine is usually with me and I have one also for my little girl as she is no longer in nappies and so far it has only been mummy who has had to use the emergency kit when out and about if we go shopping or out on a little trip to town.

Am I a bad mummy?… Let me see, no I am not

Sometimes I wonder am I a bad mummy at times due to all my different illnesses if it is not one flaring up it is another one flaring up on me instead. Being a parent either mum or dad, single or a living together can be tough no matter what but being a parent with a chronic illness or illnesses makes it a bit harder. This last year has been tough on myself and my daughter as it has been one thing after another for both of us.

Alisha just turned three in the middle of April and I have been teaching her small things like mummy needs to go work to earn pennies to get us yummy food or get us pets like Pumpkin and Squeak (we have 2 lovely guinea pigs cheeky just like Alisha but they are amazing with a trouble maker scaring them). This one has taken a while as she still tells me she does not want me to go to work every day I tell her I have to go to work.

I actually have realised in a space of a week my three year old daughter eats more than I do because of my Crohn’s being in mid flare and she has a very large range of words in her vocabulary so I do not want to miss her telling me important things like the other day we went for a walk she told me everything from the yellow sun, pink petals on ground, green tree and a blue sky. If I asked her dad who is not sick or anything just a very lazy person what she goes through with him he cannot even tell me as he is not interested in things like that. It would not care if the house is slightly messy or I am not feeling my best I still sit down and read a story with her, play games with her, take her to the park or for a walk. The little things are all that matters to her and the things that she will remember if I am not here for long. I also work full time, look after a house and a child (well 2 children if you include her dad as he cannot defend for himself but he has been forced to recently as I am fed up being treated like shit as I want out and I cannot do this any longer after doing it for five years I cannot do it with him no more).

The most important things for a child growing up are love, clothes, food and a house to live in. Anything else at that age is an added bonus as I do not know if any other kids are like mine but she would rather play with boxes or books not toys. Don’t get me wrong she loves her teddies and toys but she’s not always liked playing with toys even as a baby it is only recently she has shown an interest in playing with material things unless that is because her dad got her a tablet for her birthday as she always was stealing mine then accidently broken it on me as it fell down the stairs when I was stuck in the bathroom being very poorly one day. The way I am raising my little girl is perfectly normal as I have had a health visitor checking on us very few months to make sure we are doing well and that I do not need any extra support from herself or other medical staff. When she last visited us she did not remember I have been dealing with many different child anxieties like hoovers, showers, hand dryers for a few years and she had told me even with everything going on in my life from working and holding down a full time job, dealing with a useless person who is the father of my child, numerous anxieties with Alisha, looking after a house and garden mostly by myself, looking after myself and numerous illnesses and having a toddler meltdown every so often but every time I manage to overcome the majority of the meltdowns but not all as I usually curl up in a ball and cry then she joins me but it ends up as a distraction method then she’s forgotten her reason for her tantrum.

It has taken me three whole years to tell myself I am an amazing mum after so many different people telling me I should not have had a child as I cannot keep on top of the housework… or I am always too sick to look after her… I am sorry I may not be able to do a lot of things with her some days but for her age she is very smart and caring and understands to an extent mummy cannot always do things with her as mummy is not well… Also I am sorry but my house was spotless before my lovely caring daughter arrived but you know what housework can wait a few extra days them precious moments of a child growing up cannot wait as they are only tiny for a few years them few years fly by a hell of a lot quicker than you think I know that one for a fact. Plus the majority of the people that tell me about the housework do not have kids it can be a nightmare at times as the most of the time I have the house clean Alisha comes along and tips out all her toys all over the living room floor or she pulls all her clothes out of the wardrobe to find one top or trousers or outfit in particular. It does drive me mad especially if I am not feeling well but she is a child, one day she will learn but she is slowly learning she needs to help mummy tidy her mess up as she has to do it in school.

So we go back to my question I ask myself all the time am I a bad mummy? No I am not I am a brilliant mum to have to deal with all this on a daily basis and not have a meltdown myself. I am in a way showing my precious daughter that her mummy was a strong woman and could manage everything even if it was not done on time the most important things that mattered the most were provided for as they were necessities the rest were not it is just a matter of life and daily tasks. My daughter gets food yes check; clothes yes check; and love and affection yes check and a roof over her head to sleep at night yes check. There we go mummy is a good mummy and has never been a bad mummy apart from when mummy is not hungry and does not eat then mummy gets told off like a naughty child by a toddler as she is smart and knows you need to eat to keep up your strength. It might have taken me a while to realise that I am a good mummy to my lovely daughter but from day one when she was born, I have been the best mummy to her that she could have as I always try my best with everything. I give her what she needs on a daily basis and that is the most important thing the rest to her at this age is an added bonus and you know what no matter how I feel she loves me to pieces and that is my reward even if sometimes the loving embraces we have she nearly kills me by tightening her arms around my neck I still love her to pieces and she loves me back.

The reason why I wrote this was mainly because of the judgemental comments I have had over the years regarding Alisha and me being a bad mother to her, from my own family telling me she should be eating her veggies blah, blah, blah, I am sorry but when she was not eating them she was still eating her fruit. When I was growing up my twin sister was never forced to eat her veggies at dinner as mum and dad both knew she hated them, well so does Alisha, I offer them to her if she does not want to eat them so be it they were there on her plate she eats what she wants off her plate. Other things were she needs to go out to baby or toddler groups to interact with other children, I cannot always drop everything as I have hospital appointments, work and many other things to sort out so I cannot always drop everything on the days that the groups she can go to there are times that other things are more important than going baby or toddler groups. So if you are reading this and you are suffering from different illnesses or not suffering from them take a step back and look at the situation yourself and do not let anyone tell you differently if you see yourself as a good parent then believe in yourself you are a good parent build your confidence up in yourself and do not let anyone knock you down.

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. 

Self-esteem and Chronic illnesses

Living with a chronic illness such as Crohn's disease, you have to deal with a load of shit (both literally and figuratively speaking).  Not everyone suffers the same as everyone is affected by the disease symptoms but also the side effects of the treatment they are receiving.  Some of the symptoms like the ulceration in your stomach or colon are not visible unless you have an endoscopy or colonoscopy, but there can be side effects which can be physical too. Self-esteem being one physical manifestation as it can take a hit when you are struggling with side effects like weight loss, facial swelling and weight gain due to steroid treatment and acne too.

Edema is causes by dehydration and malnutrition which is usually caused by rapid weight loss during a flare up.  It is hard to keep things down and keep them in when you are running a marathon to the bathroom between 10-20 times a day or even more. Fluid and nutrition is easily lost. An IV saline drip is usually the best method to help dehydration but if the body is lacking protein, edema can occur.

Edema is the lovely swelling caused by fluid retention.  So after a drastic drop in weight such as 11stone 7pounds to 6stone 8pounds in a period of 6months could find yourself swelling up like a human balloon.  Edema is much harder on the body than you can imagine.  When you are either lying up in the hospital bed all day with little or no energy at all, the muscles become weaker.  This makes the swelling feel a lot heavier, in turn making it harder and more difficult to get out of bed.  The edema can surprisingly cause back pain due to the pressure on the nerves and muscles.

Without an IV saline drip the fluid weight can be lost within 2-3weeks.  Unfortunately this will bring you back to an unpleasant state of being underweight.  This is definitely not glamorous at all in the slightest.  After such a drastic weight loss we usually try to regain it as quickly as possible depending on how much we have lost. It can be a long and slow process.  Last time I had lost a lot of weight that I needed to regain was after my massive flare which lead to my diagnosis of Crohn's disease back in 2013.  My normal weight before I had my daughter Alisha fluctuated between 65-70kilograms.  After I had her I could not shift the extra weight I put on during the pregnancy or afterwards as I had been put on the lovely devil tic tacs, prednisolone for just under 5mths due to my medications causing really bad liver inflammation. My normal weight is still not decided yet as 2years on I am still trying to lose that extra weight as I was over 100kgs.  During the transition period I felt really awkward and uncomfortable but more so after I had Alisha as I was already down about my weight and then adding steroids into my mixture of medications it made me feel worse.  Worse in a sense that I refused to go out and about to the shops, baby groups and other places.  They were the days I felt very discouraged to go out anywhere even when I had a lot of energy and it was because I did not want to be seen in such a state. 

On top of all the weight fluctuations, the usual treatment for Crohn's disease is steroids to control a flare up and for Fibromyalgia is a form of anti-depressants to control the pain. Both come with side effects and the most common are weight gain and acne unless you stop the treatment it seems to stay for the full treatment course.  I despise the acne as no matter how much I cover it up with make-up it is not always 100% effective and I have noticed it can make it even worse.  I know most men would not be plastering their faces in concealer if they have really bad side effects from the steroids which leaves them with even less options to cope and manage it.  Along with the horrible little red bumps that appear all over your forehead, cheeks, chin, chest and for me along the jawbone near my ears, steroids especially prednisolone causes facial swelling.  Everyone deals with it differently some worse than other. I usually suffer really bad with "moon-face" and look like a human sided hamster when I am on them to control my Crohn's disease. 

All of the side effects can make it extremely difficult for anyone to feel confident and happy about themselves which is very important during the recovery process.  Even when you do not feel like going out, but being locked up away from other human beings can be detrimental as well.  Locking yourself up away from others can cause social anxiety, generalised anxiety or even depression.  After I had Alisha I was diagnosed with social anxiety and depression as I only seen her and her dad on a daily basis and anyone who came round to visit like the health visitor for the most of her first three months.  If you get hung up on how you look now (which is only a temporary state in which your body is in) you can make the recovery process even harder.  If you do not feel back to your 100%, remind yourself in time you will be in a better place both physically and mentally. 

 Tips to try to boost your self-esteem:

• Go exercise. Exercise can help boost my self-esteem especially during my recovery process with any of the things I suffer from. Yes even when my Crohn's is flaring up and the only exercise I want to do is running to and from the bathroom just that little bit of a walk outside is all it takes to help. The exercise does not have to be in the gym it can be a walk around the block, a run around the park, lift some weights at home (if you have any or you can compromise with using something else like a shopping bag full of tins).  Just a little bit each day helps build your self-esteem and it also helps to build back your muscles and boost your overall mood.
• If you have insecurities about your weight either being overweight or underweight, usually wearing baggy clothes help make things less noticeable. There are very slim chances of anyone even noticing your weight and size.  It is what is going on in your head about your weight that is the big deal. Do not forget it is only a temporary state your body is in it is not permanent and you can work on it over time to get it the way you want. Just do not take it out on yourself as it will not help your self-esteem. You are beautiful no matter what as it is your personality and character that matters the most not your physical appearance.
• Do something that makes YOU happy!  Write, draw, watch movies, read, go to the gym or go out with friends for a coffee. Do something to make you happy and put a beautiful smile on your face. Not everything has to have a lot of energy to do something for yourself if you are not up to it.

Your appearance changes more frequently than you can imagine.  Some seem more drastic that others because the only person who knows your body the most is yourself.  Sometimes it is best not to care about the changes depending on what they are.  Do not stress as it does not help as it usually makes everything seem worse than what it actually is.  You have to just put your mind to what you want to achieve and concentrate on that and work towards that goal. Do not set very short goals as they are not easily achievable and can cause even more stress.  If you wish to lose weight do it by changing your lifestyle not follow strict diets like weightwatchers or slimming world they are not easily maintained I know that from experience.  Set a goal that can easily be achieved like losing 4kg in 2months is achievable and not full of pressure to cause a lot of stress on yourself.  It is achievable and can easily be maintained afterwards.

Hiding behind a smile - how I manage to hide my worst days with myCrohn's Disease

When I usually go out of the house you will usually see me all put together nicely.  Makeup done, hair done, etc.  I have learnt how to hide behind little tricks to look very presentable with very little effort.  These little tricks are to act like a normal person despite being ill.  You will see me smile even when I am in excruciating agony and possibly dosed up on pain killers.  My body is yelling at me even though I am hiding what I am feeling and thinking.  I do this to act like I am normal.  I do it to feel normal too.  This is all to hide from others so they do not know I am suffering in agony and so they do not focus on me being sick as most people do not know how to respond without hurting me.

Very few people see me at my lowest (which is my worst days) as I usually hide them very well now.  However, this is not always the case as some of my very close friends know when I am lying so if they ask me a question and I usually reply the exact same answer time and time again they now know that I am hiding something whether it be my Crohn’s hurting me or my anxiety or depression getting to me.  My little girl Alisha also knows when I am hiding something from her so she has started bringing me a teddy and giving me a huge slobbery kiss and hug but that is usually when she sees me slipping with my guard as it does get really tough keeping my guard up all day.  During a flare up of any of my illnesses whether it be the Crohn’s disease, anxiety or Fibromyalgia, the last place my body wants me to do is go outside of the house, plaster a fake smile on my face an look presentable.  On my worst days I actually struggle to get out of my bed and Alisha actually comes into my bedroom now and says “up mummy up”.  She may only be 2years old but she knows that the day must go on even if mummy is poorly and wants to stay in bed all day, so instead we have a pyjama day instead hiding away from everyone.

On my bad days I only go out of the house if I desperately need to go out so anything like appointments, work or a food shop is when I only leave the house.  On a terrible day I do not even leave my garden or house depending what the weather is like outside.  When I do go outside I need to make sure I feel safe or there is toilets which are close by just encase I need to run to them quickly.  These places I need to feel safe because I do not need to explain myself if I have an accident or they are understanding.  I do not do this because I feel ashamed of my day to day reality, I do this because I sometimes need protection from the vulnerability I am experiencing.  At the end of the day it usually leads to people’s misconceptions about how bad my illnesses are.  There are days I could have a shower and I am out of breath but I do not let anyone know, but it does not mean I do not experience this.  There can also be days when my hands shake or I cannot get my feet to move or my face turns a grey colour as I cannot swallow something or I am trying to catch my breath.  You might not see these things happen as you are busy or just because I hide them from everyone or I do not speak about it to anyone.  YES these days do exist and I can promise you they do exist.  There are also days I am curled over in agony because I have ate or drank something that does not agree with my stomach and only a selected amount of people are aware of this happening.  Or I am frozen with anxiety and I cannot actually move from where I am standing.  This happened the other day as I was promised a lift home after I had finished work to collect Alisha from the childminders.  But that person text really late and my anxiety had kicked into overdrive and that made me freeze to a spot near work because I knew I would have been collected safely after arriving to work and the whole shopping centre was evacuated due to a bomb alert.  I did have the choice of going home and saying I am not working but after the police had gave everyone the all clear to return to work I said to myself that anxiety you are not getting the better of me as I am in control not you.

Bad days and terrible days do happen to people with chronic illnesses but those who suffer with more than one chronic illness can suffer with more bad or terrible days depending on if the illnesses are in remission and under control.  However, there can be a day when that illness decides to say oh no you are going to be tortured today and I am going to make your day hell. I say all of this because it’s easy to judge a person’s condition by what you see when you’re with them, but you can’t rely on that. When you see me you may wonder why I can’t apply for a regular job. You may wonder why I write about chronic illness so passionately. You may think I exaggerate because I enjoy pity. But when you see me, you aren’t seeing all of me. What you see one day does not accurately depict every day.

Crohn's disease and Fibromyalgia

Fibromyalgia is a result of a number of sensitivities throughout the body from head to toe.  Digestive issues are extremely common with those who suffer with fibromyalgia.  These include GERD or acid reflux issues, gluten intolerance, irritable bowel syndrome (IBS).  Other digestive issues that are common with fibromyalgia are Crohn’s disease and Ulcerative Colitis which are the two most common inflammatory bowel diseases (IBDs).  Over a period of time it can cause a lot of discomfort.  Why are they intertwined?

IBDs attack the bowels and make them so sensitive to different types of stimuli and to what we ingest.  With IBDs your whole gastrointestinal tract is inflamed to the point it is not functioning properly.  This inflammation can be extremely painful as well so it is good to keep track of what goes into your body so you know what causes the pain and can end up doing a lot of damage too.  Crohn’s disease however, does not just affect the gastrointestinal tract and symptoms can vary depending on your case.  In many cases the symptoms can be debilitating and make it very difficult for the person to eat and digest their food properly.

Some major symptoms of Crohn’s disease can clash with the symptoms of fibromyalgia symptoms.  These symptoms can include lower back pain, muscle pain, problems with the joints.  Other symptoms include swelling of certain areas of body, blood in stools, cramps, weight loss, dry skin, severe itching and poor general nutrition.

In the worst cases surgery is needed to be performed on patients and they have to create a stoma which is when a part of the intestinal tract is missing because it is unable to work properly so part of the intestine is put through the abdominal wall to create a stoma to attach a bag to collect the waste produced.  With the research done so far no one has found the cause or the cure for Crohn’s disease.  There are a wide range of theories out there like the presence of viruses and bacteria, from irritable bowel syndrome and genetics.  The only solid evidence found at present is that there is a particular gene that all people who suffer with Crohn’s disease seem to share but no one has been able to make the full link between it all at this point in the research.  At some point in the future they will hopefully be able to come up with the solid reason behind why it happens to certain people but not all of us.

There is no solid link between Crohn’s disease and fibromyalgia.  This is mainly because researchers have still not been able to determine exactly what the causes are for each of the illnesses.  It is not common to find someone with both fibromyalgia and Crohn’s disease but it is not unknown of someone to have both illnesses (like myself as I was diagnosed with Fibromyalgia on May 2^nd 2017 after years of suffering with pain, fatigue and headaches alongside my symptoms of Crohn’s disease).  Researchers are still trying to determine exactly why they seem to be connected to one another, but like with both of their causes there is only one huge link that many doctors ascribe to.

Irritable bowel syndrome (IBS) is the disorder of the bowels that makes it hard to eat certain types of foods due to sensitivities to them.  Those who have diagnosed with fibromyalgia frequently have IBS as a symptom they are dealing with on a daily basis.  Due to many people who have fibromyalgia end up getting treated for IBS and looking at some of the theories behind why Crohn’s disease happens in certain people.  Both fibromyalgia and Crohn’s disease have something to do with IBS, there are some theories out there that people with IBS and fibromyalgia are more likely to end up with Crohn’s disease in the future.

What does that mean for treatment for those with Crohn’s disease and fibromyalgia?

Those with Crohn’s may notice that you do not have to deal with the symptoms on a daily basis if the illness is in remission.  Other periods you may have to deal with the symptoms for an extended amount of time due to a flare up.  During flare ups you want to make sure that you are getting treatment to help reduce the amount of pain that you ate coping with.  These can include a variety of different things, from medications to control your symptoms, surgery to take out part of the intestine that is suffering from Crohn’s disease or a variety of other treatment plans agreed with your gastroenterologist.  Always keep your doctor in the loop about any symptoms you are suffering from as you may end up seeing that the Crohn’s disease or another illness has started to come up alongside your fibromyalgia symptoms.

It is very important to look after yourself because the other illnesses that can often occur with fibromyalgia can be mistaken as a worsening of the fibromyalgia or Crohn’s disease.  Be sure to keep an eye on all your symptoms and keep a journal and if there are any changes or something new has started then you can show the journal to your doctor when the changes started or how the severity has changed.