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.

IBD and women

I was diagnosed with Crohn’s disease after months of suffering.  I had ended up in a&e after collapsing in work one day in March 2013 and I was sent home to be seen by a doctor and not to come in unless I was signed off as fit for work.  That day I walked into a&e I was not allowed out again until a month later.

One full month in hospital and I was bored out of my mind.  The first 2weeks I was bed bound and was only allowed out of bed to go to the toilet or get a shower.  The rest of the time if I moved I was taken back to bed again as I was extremely poorly as I had no energy or strength to stand up on my own.  I had needed support off nurses to take me to the bathroom as I was extremely weak.  I was unable to keep any food or drink down and it scared me out of my wits not being able to eat or drink properly.  When I was in the hospital I was put on saline drips and was given special drinks to make sure I stayed hydrated.  After about a week after my admission I was starting to be able to manage food but only a few mouthfuls as I had no appetite.   I had fallen out of love with food as it made me suffer with so much pain I cried until it had passed through me.  This pain was caused by all the ulceration in my mouth as I had massive mouth ulcers and my bowel was also inflamed and ulcerated too.  This inflammation and ulceration was caused by a Crohn’s disease flare up.

Anyone with an IBD would understand how debilitating and draining a flare up can be mentally, emotionally and physically.  It can be extremely painful, you might have to be hospitalised or unable to leave your bed or heavily medicated.

While both men and women can suffer from inflammatory bowel disease, but as a woman, there are a few things I have noticed that are gender specific from help from the professionals and red faced conversations.  There are a few things that women have to deal with when suffering with IBD have to put up with:

1.    You have more favourite clothes than an average woman

I have a few favourite pjs that I love to spend my bad days in.  During my period and my bad days I spend more time lounging around the house in my comfy pjs due to the bloating, pain and the need to feel comfy.  It sometimes helps me to feel better in myself even with the pain and bloating.

 

2.    It can be a bit embarrassing when needing to go and use the public toilets

Most guys seem to be able to go for a poo in public toilets much easier than females.  When you walk into female public toilets there is always one person complaining just when someone makes a noise that is not normally made when going for a wee.  Or someone complains about the smell in the toilets due to someone doing a poo.  So for a woman with an IBD in a full blown flare it is not really ideal as it is embarrassing when someone starts complaining.

3.    It can also be embarrassing having to talk about the toilet to people

Guys get away laughing and joking when they fart but when women do the same or talk about bowel habits it is extremely unladylike.

4.    You get plagued with Juice Plus offers more than anyone in your friendship group

Women Juice Plus sellers seem to target female IBD sufferers and they explain how “amazing” the natural ingredients are in the capsules which are supposedly really good for ulcerative colitis or Crohn’s disease.

 

5.    You own more high waisted clothes than a shop

Some people with IBD might have to have surgery to remove part of their intestine and part of the intestine has to be brought out to the abdomen to release the waste.  The surgery can be done to give the bowel a rest or because part or all of the bowel has had to be removed.  Most women with an ostomy live in high-waisted clothing due to it being secure, supportive and trendy.  Those people without an ostomy use high-waisted clothing to hide the bloating caused by IBD.

6.    You have lost weight is no longer taken as a compliment

Just before my diagnosis of Crohn’s disease in 2013 I had lost so much weight due to a massive flare and my colleagues were concerned with my well-being.  Customers and other people congratulated me on the weight I was losing.  But in my head it was most defintiely not a compliment as it was not intentional as I knew I was sick but no one believed me

7.    Insulting comments like “you have put on so much weight” can be even more of an insult

During a massive IBD flare doctors always give patients steroids to help get their health back on track again.  With steroids everyone starts commenting on how much weight you have gained instead of how much you have lost.  Other comments include gerbil or hamster cheeks due to the steroids.

8.    “I get that pain too” is a regular occurrence

When it comes from someone who also suffers on a daily basis with IBD or another chronic illness such as arthritis or fibromyalgia that is fine.  But when it comes from someone who is describing period pain against IBD pain it actually takes the piss I cannot take it no more.  Yes I have a lot of people in work coming about period pains but I know they known I suffer much worse with my IBD when I am suffering with a flare up.  I am sorry but your womb is not the same as a very ulcerated colon.

9.    Doctors do not take women seriously

Due to stomach cramps being one of the main symptoms of IBD most doctors try to fob you off with it is just women’s problems even though we know ourselves it is nothing to do with our period and it is actually to do with our bowels.  Bleeding is another symptom and some doctors surprisingly does not understand the difference between blood coming from your rear end and bleeding from your vagina.  This is another reason why doctors pass it off as women’s problems.

10. You become extremely understanding to others

Yes it annoys me when other women compare their symptoms of their period pain to Crohn’s or Fibromyalgia pain.  But over the years of suffering I have noticed I am a bit more compassionate towards other women especially when they have to take time off for stomach cramps.  My daughter suffers a lot with stomach cramps and since we have figured out that it was mostly down to allergies (she is only two but with four food allergies that we are aware of to date and under investigation for IBD and Coeliac disease due to her symptoms being exactly similar to both illnesses after taking out everything with any of the allergens she cannot have).  She does know when I am in pain and she is very compassionate and usually gives in to giving me hugs and kisses to make me feel better just like I do when she has stomach cramps.

11. You are an extremely strong person (even when you do not think you are)

On a daily basis we deal with bloating, cramps, bleeding, fatigue and many other bowel related things.  We gain a lot of weight, we lose some too, we trial different combinations of medication to stay at a balance.  We have to face surgery, infusions, injections and we have taken way to many different tablets under the sun.  We also have to deal with rude, judgmental or inconsiderate people and people who just simple do not understand.  We already have to deal with so much as it is but we are still here and still fighting our way through things.

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.