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. 

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.