Dealing with everything...

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

This is our beloved Pumpkin

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

George, Squeak and Wilfred

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

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

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

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

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

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

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

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

Look after yourselves mentally, physically and emotionally.

Update

Hey everyone

Sorry I have not been posting much lately I have been struggling with a lot of things over the last year or so but mostly the last 6months. I am sorry I have not been around much but I will be coming back soon I promise. It has been very hard mentally, physically and emotionally. Between myself and my daughter who is now five (yeah I know a big 5 year) and I am a single mum so everything has just got too much and I had wanted to give up but I am still fighting so do not worry I will be back and kicking ass again soon. Hope you are all well and if you wish to see something specific please drop me an email or a comment.

Thank you for continuing to read my blog post while I have been away and I have a few posts started on my phone but I find it easier to work on my laptop. My friend who I met in April/May time on facebook is going to help fix it as he knows how to work it all unlike the person who my ex took it to after he made it have the blue screen of death and now its working worse than what it was before he made it go all blue so hopefully I will have it all back up and running in the next month or two but I hope to continue doing some bits and pieces on my phone until then.

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.