The next part of my Crohn's journey

Well as you all knew my Crohn's had been in a flare since March time this year and I had been in to have a colonoscopy and MRI scan in May. My results had shown that my combination of 6-mercaptopurine and allopurinol were no longer working for me. My consultant had to make the decision on what my next course of drugs would be as my Crohn's disease is medication dependent. Hearing this off my consultant of 2years was a shock as it is the first time someone has told me this in the entire 5years of being diagnosed. I can see why he had said this as every time my Crohn's flares up I cannot manage it by myself with my diet I always need to get intervention from my medical team and put on steroids or I am stuck in hospital on umpteen different drips and IV steroids. This time I had gone to my GP and explained everything and that was when she said it was my Crohn's as it was not my normal flare up symptoms I was getting it was different and now we know why as it had moved into my small intestine and was no longer active in my large intestine. So my last consultation with my consultant in June he said we were going to try Infliximab (Remicade) and if it does not work then I will be on my last available option which would be Ustekinumab (Stelera) before it would most likely be asking the guys in charge of trial drugs to get me on the list. I am only 26 years old and I have nearly ran out of options to control my Crohn's disease as I am medication dependent. I do not want to be kept on steroids for ever as I have been on Budesonide now for 5months and it has started to affect my joints as I cannot take calcium supplements due to me having a gene called familial hypocalciuric hypercalcemia (FHH) as my calcium in my body is higher than normal and I rarely have to take calcium now because of the gene. It is constantly monitored though to make sure it is under control as when it gets really high I suffer from more frequent headaches and I drink a lot and I mean a lot this is usually around 5litres a day. So on the 24th July I had started my infliximab journey and a week later I am struggling with the fatigue but I have started to see small improvements with my Crohn's but it is still early days and I have 2 more rounds before the frequency of my infusions is put to 6 or 8 weeks and then go from there.

This was my infliximab infusion last Tuesday and I told the nurses who were looking after me that it was my new friend (I hope it is anyway as I hope that it works for me then I can live a better live and hopefully not need to panic where all the bathrooms are when I go out).

B12 and IBD

Vitamin B12 plays a very important part in the body as it helps to keep the nervous system healthy and also is needed to make new cells in the body. A lack in it can be a cause of pernicious anaemia which leads to a reduction of oxygen being carried around the body in the blood. 

The most common symptoms of vitamin B12 deficiency include:

·         Tiredness

·         Lethargy

·         Feeling faint

·         Breathlessness

Less common symptoms include:

·         Headaches

·         Heart palpitations

·         Taste being altered

·         Loss of appetite

·         Ringing in the ears also known as tinnitus

·         Looking pale

·         Sore mouth and tongue

If the deficiency is left untreated it can get worse and end up with long term issues such as:

Psychological problems like depressions, confusion and memory problems.

Nerve problems like numbness, pins and needles, vision changes and unsteadiness.

A simple blood test from your doctors or hospital can indicate if you have a B12 deficiency.

Pernicious anaemia is very common in people who have been diagnosed with an autoimmune disease such as Crohn’s disease and Ulcerative colitis. Vitamin B12 is absorbed in the end of the small intestine in the ileum. People with Crohn’s disease in this area may not be able to absorb B12 very well. People who have had to have surgery to remove the stomach or the end of the small intestine may also struggle to absorb vitamin B12.

To treat vitamin B12 deficiency, injections are often given to people who have a big deficiency and those who have a mild deficiency are told to purchase vitamin tablets with extra vitamin B12 or to eat foods rich in the vitamin. The injections help to quickly build up stores of the vitamin. Once the stores have been replaced then the doctor will only often maintenance injections depending on the reason behind the deficiency.

Vitamin B12 supplements are available to buy from many places like health food stores like Holland and Barrett’s or in the supermarket like Tesco, Sainsbury’s or Asda. These may be recommended for people if their diet is lacking in B12. Vitamin B12 can be found naturally in certain foods including:

·         Meat

·         Fish

·         Eggs

·         Milk

I had been told by my doctor in my GP surgery that I was low in B12 and to get some supplements even though I had about 6 of the symptoms of a vitamin deficiency. I ended up going into Holland and Barrett’s on my dinner break in work and explained I was lacking B12 and magnesium as that is what my bloods were telling us. I explained to the lady what the doctors have told me and that I also had Crohn’s disease in the ileum. She was a lovely and understanding lady and understood that if I were to take B12 tablets I would not absorb the goodness of the vitamin in my small intestine. She went the whole way through the products in the store and found something which would be better for me to absorb the B12 and magnesium. I have been using both sprays for just over a week now and I can start to feel a difference in myself. I normally need a mid-afternoon nap and the first few days I needed a nap in the afternoon to see me through the rest of the day. Now I am a week in I have not been relying on needing a nap in the afternoon it is now early evening but the longer I hold out the better I sleep at night time. I hope it stays working as there are days the fatigue just knocks me clean out before I even get to lunch time.

Calcium and IBD

Calcium is important for the formation of bones and to keep them strong and healthy. The circulation and nervous systems also rely on calcium to function. Teeth also rely on calcium to keep them strong. 

People who suffer with IBD are at a risk of having calcium deficiency. This is due to the importance of vitamin D as it regulates how much calcium circulates in the bloodstream and how much will be used by bones to maintain healthy structure. If we lack vitamin D our body will not be able to regulate the calcium in our body correctly. 

Our body does not make calcium and relies on us getting it from food we eat. If we do not get the calcium it needs the body with start to break down its own bones (where lots of calcium is stored) to get what it needs. This eventually leads to osteoporosis. 

Symptoms of calcium deficiency are:

·         Muscle aches and cramps

·         Tooth decay

·         Weak or deformed bones

·         Brittle nails and dry skin

·         Kidney stones

·         Osteoporosis

Doctors usually diagnoses calcium deficiency through blood tests. 

The doctors have come up with a few theories over the years why we might be deficient in calcium. They are:

·     Calcium is absorbed in the small intestine so people with Crohn’s disease in this are i.e. ileocolitis, ileitis, gastro duodenal and jejunoileitis will find it harder to absorb the calcium. 

·      Steroid medication such as prednisolone interfere with the absorption of calcium, slow down the process of new bone formation and accelerate the breakdown of old bone. Long term use of steroids can lead to significant bone loss so it is very important that people on steroids are given calcium supplements at the same time. Steroid medication is most commonly used to treat flare-ups with Crohn’s disease and ulcerative colitis as it helps to calm down the flares.

·      Most people with IBD may avoid dairy as it exacerbates their symptoms like myself as it is one of my trigger foods so I mainly use soya based products as an alternative. If we do not get enough calcium in our diet it can lead to a calcium deficiency. 

Calcium deficiencies can be treated either by taking a supplement like calci-chew which the doctors are only able to prescribe or a supplement from a health food shop or supermarket. Or we can increase the food which contains calcium such as dairy such as, milk, yoghurt and cheese if you are able to tolerate it with your IBD.

Or non-dairy foods:

·         Bok Choy

·         Leafy greens like kale and spinach

·         Oranges

·         Salmon

·         Shrimp

Or there are calcium fortified foods also available such as fresh orange juice.

Vitamin D and IBD

Vitamin D helps to regulate the amount of calcium and phosphate in the body and it is essential for healthy bones. Vitamin D also helps to reduce inflammation and is important for good general health and growth. There has been studies which have shown a correspondence between people with inflammatory bowel disease and low levels of vitamin D. It is one of the most common vitamin deficiencies seen in people with Crohn’s disease. The studies have found people who have low levels of vitamin D had a higher severity of the disease. It has highlighted the importance of monitoring and treating people with IBD.

Vitamin D is essential for absorbing calcium into the body. This means people who lack vitamin D most often lack calcium as well. A small lack in vitamin D may not cause symptoms but can cause:

·         Tiredness

·         Generalised aches and pains

A severe lack in vitamin D can result in:

·         Bone deformities in children i.e. rickets

·         Bone pain and tenderness in adults (osteomalacia)

People who suffer with an IBD are more prone to osteoporosis and other bone diseases which is attributed to the lack of vitamin D.

Vitamin D deficiency can be diagnosed by a simple blood test by the doctor. 

There are a few different theories as to why us IBDers may have less vitamin D. They include:

·         Due to their symptoms they may be more likely to stay inside, near a toilet or resting and then we do not get much access to sunlight to get natural vitamin D. 

·         More IBDers live in the northern areas which has less sunlight.

·         Vitamin D is a fat soluble vitamin and people with active inflammation in their small intestine poorly absorbs fat meaning less fat for vitamin D to be absorbed in. 

Vitamin D is made under our skin due to the reaction to sunlight so increasing your exposure to sunlight can help increase your vitamin D levels. However, you need to make sure you do this safely. In the northern areas which includes the most of Europe there is not thought to be enough sunlight during the winter months to get the sun exposure which is needed. 

It is therefore important to get vitamin D from other sources, such as through your diet or through supplements. It is also found naturally in a small number of foods including:

·         Oily fish such as salmon, sardines and mackerel

·         Eggs

·         Fortified foods with vitamin D such as cereals

If you choose to take an over the counter vitamin D supplement make sure you do not exceed the recommended dose.

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.

Spoon theory

The spoon theory came about years ago by a woman called Christine who suffers from Lupus.  She started this theory to explain to a friend how it is like to deal with chronic illnesses on a daily basis. Christine grabbed a handful of spoons and used the spoons to represent our energy. She had grabbed 12 spoons for someone who has chronic illnesses. Anyone without any illnesses have plenty of spoons like hundreds and thousands of spoons. 

For every task we do every day requires energy so each task uses a spoon. So Christine explained to her friend what she done on an average day and took a spoon away. When all the spoons are gone the only way of requiring more spoons is resting and waiting to regenerate more spoons. Due to this anyone with chronic illnesses will ration their spoons throughout the day. Most people do not have time to rest in the middle of the day so we have to ration them throughout the day instead of using them all up in the morning as no spoons means no energy. On the other hand if someone without a chronic illness were to go hard in the morning they might be a bit tired or they might be fine. In most cases they are able to continue with the rest of their day because they have plenty of spoons to get through the day. They might need some extra coffee but life is still able to carry on. Like Christine I am careful with my spoons and try not to waste them as I have limited spoons some more than others as I have issues with sleeping.

Well this is the spoon theory a concept developed my Christine Misbranding and referenced to by many people who suffer from chronic or invisible illnesses. Many people living with conditions such fibromyalgia, Crohn’s disease, anxiety and depression. 

Living with chronic illnesses can be deceiving as we can appear “fine” as we often do not display easily spotted physical symptoms. It can be tough for everyone involved with that person like friends, family and colleagues to understand why they bail out on happy hour or cannot drive long distances for visiting or take a lot of sick days. 

I suffer from backache, joint pains and abdominal pain. They are triggered by several things like stress, weather changes, not taking a proper rest or an illness flaring up like my fibromyalgia, Crohn’s disease or my IBS.

Many days I try to operate with minor pains in my back or joints and I have to take paracetamol or over the counter codeine and hope the pain goes away. Other days the pain is worse and the pain medication does not work so I have to hope lying down on the sofa or in bed works. 

As a full time mum and also working full time with no friends or family that lives on my doorstep to help out as it is just myself and Alisha now in the house it does disrupt life for both of us. The days I am in pain and need to go places we need to leave earlier as I cannot walk fast like I normally do. The housework gets threw on the back burner as I have no energy to do it myself. I might not be able to take Alisha places even if I make a promise to her that we are going somewhere like the cinema. The television ends up being our friend and that is where we stay unless I need to get up and make us food. There are days I will not be able to do much but lie on the sofa and rest. Because of this I must pace myself throughout the day. If I try to do too many things I run out of energy and I have to rest up. 

At home my work load piles up while I am sick. I get the basics done around the house. The laundry I hate with a passion so I literally get it washed and dried but it usually never gets folded unless I have visitors coming or ironed if I really need to get it ironed. 

I may not look sick but I do have varying levels of dishevelled at times because of a 3 year old, so it is nothing too out of ordinary there. To everyone, people who suffer with chronic and invisible illnesses can appear fine and it can be very hard to understand why we cancel plans or why they always complaining about being tired. The spoon theory which Christine put together to explain to her friend provides everyone a context to share with people in our lives so that they have a much clearer picture of what we have to deal with on a daily basis.

Colonoscopy results

Well I had my colonoscopy on just gas and air. I was told by everyone in the room I was mad for not getting sedated due to the scar tissue in my descending and transverse colon from back in 2012/13 where they found it originally when I was first diagnosed with Crohn’s Colitis. But if I was sedated I would have to be kept overnight as I had no one to collect me from the hospital or stay with me overnight or look after my little girl so I decided I would not be sedated and just have gas and air. I was allowed to take paracetamol before my procedure so it was in my system. I think it had helped this time too as it was not as bad as last time when I was on gas and air when I last had my scope back in 2015 when Alisha was 6mths old and she would only come to me during the night not her dad as at that time she never slept through the night.

From what he could see he could see that my Crohn’s has gone from the descending and transverse colon into the caecum and terminal ileum and a bit further up but because a colonoscopy can only go so far up he would need me to attend my MRI scan at the end of the month to see how far up it has gone into my small bowel. But he has said I have Crohn’s ileitis and it is in a flare-up at the moment. 

Well the decision of my treatment has been given back to my consultant as I had got one of his colleagues doing my scope. His suggestions he has put in his report and he suggests infliximab and something to go along side it which is aimed at my small intestine as my Crohn’s from what he could see is mainly all in my ileum and a bit in my caecum in the large bowel where the small bowel connects with the large bowel and no longer in the colon. He did say at the end I would have to wait for my appointment in June for my consultants decision unless he contacts me before then if he gets my MRI results when I have it in a few weeks time.

From having being sedated for my gastroscopy and colonoscopy back in 2013 to diagnose me with Crohn’s disease and then going through it twice unsedated with only gas and air I have to say it is up to you in which way you choose as it is you going through the procedure. If I was to go through another one I would choose gas and air as you have no restrictions afterwards unless you have a load of biospies you might be in a bit more pain than if you had no biospies taken like I had none taken this time round as they already knew my diagnosis so to safe me extra pain and bleeding he decided not to do any and just take a lot of pictures as evidence of where my Crohn’s disease is and if it was flaring.

If you have any questions about anything you can always email me or leave a comment.

D-day

Well today is D-day. I am having my colonoscopy. I am having it done without sedation. All the nurses think I am hardcore as I am doing it only on gas and air and maybe some pain relief via IV. I am waiting to go in for my procedure now so I will let you all know what happens later on.

“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.

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.