IBD and is the person you love a keeper?

Every relationship I have been in, a large portion of every one of them we have had to deal with many health issues from passing out with anaemia and being doubled over in pain on the toilet or not being able to walk up or down the stairs without having to crawl up or down them in pain. Most of the guys I have been with have walked out the door or ran out in some cases and never looked back or never got in touch again after they seen the worst I have been with my health.  There are a few things most people look for when they have chronic illnesses and looking for a partner or that very special person. 

1.  They hold your hair back while you have your head in the loo puking your guts up

When you live with chronic illnesses such as Crohn’s disease, you have more than your fair share of puking.  A real man will stand by your side, he will hold your hair back for you and if you happen to miss the toilet he will help clean it up.

2.  They will love you even at your worst moments

Between our periods and the lovely devils tic-tac’s Prednisolone, we can be well… difficult to live with ha-ha.  A real man who you want to stay around, will stand by your side and love you no matter what.  He will understand that behind all the angry faces, fighting, arguing and mood swings that there is a loving and caring creature.  Prednisolone is most definitely not for the faint hearted and if he is a keeper he will look past all that.

3.  They think you are beautiful even when you are really sick or have loads of scars

Living with a chronic illness makes you feel ugly (well it makes me feel ugly for definite).  You look at yourself in the mirror, or you have a moon face from taking steroids, or you have an extra bit of weight due to the steroids, or you have lost a lot of weight due to a flare with your Crohn’s disease.  Whatever the case may be having an illness or multiple illnesses does not make you feel like a beauty queen.  Scars, hair loss, the pale complexion… if he does not see your true beauty, he is not worth keeping.  A real man will remind you frequently of how beautiful you are then he is definitely a keeper.

4.  They will yell at the doctors for you instead

There are hundreds of doctors out there.  If you have been suffering for any length of time with an inflammatory bowel disease, you will know there are also a lot of bad doctors out there.  Sometimes you just do not want to deal with it… either because you are too sick to voice your opinions or you are too tired to put up a fight.  In those moment you would want a man who will take up the sword and put up a fight and help fight your battles for you.  If he loves you the way he says he does he will fight for you until the best possible care is found.  If he shows any signs of being a hero then he is most definitely a keeper.

5.  They will stand by your side when everyone else does a runner

I have dated a few guys in my time, yes I know I am still young.  Most of them had ducked at the first sight of a sniffle.  To be honest, most guys who do that are most definitely not that into you in the first place.  But you really do not want a man like that anyway as he would run away eventually. You need a man who loves you no matter what the future will hold.  You want a man who is willing to ask for your hand in marriage or stick with you no matter what happens even if you are diagnosed with an incurable illness or diagnosed with secondary illnesses with your IBD.  You will need a man who will stick with you for better or worse.  You need a man who will love you come what may and you deserve that.  A man who lives up to the vow “in sickness and in health” will be the man who is a keeper even if he is not married to you as long as he stick with you through every up and every down in your life that is what matters the most.

To anyone who has had a man scorn at you because you are too sick due to your illnesses.  REMEMBER you are still very valuable.  The man who runs away at the slightest sign of trouble is not worth your time.  You want a man who will love you and respect you with every ounce of his being.  Ladies you are worth it.  DO NOT ever settle for, or get hung up on, any man who makes you feel like you are not worth his time.  If he gets on like he does not care about your health or wellbeing then he is not worth any second crying over if you split up or he eventually does a runner on you when you are at your lowest or the worst time of flare up and end up being admitted into the hospital.  Apart from running away and leaving you to cope on your own being sick, manipulating and controlling relationships are definitely not good either.  They are not good especially when he manipulates everything you say and tries to make it look like you are actually not sick or tries to make himself look like he is more ill than you are for example, you have a flare up with your IBD and he is suffering from man flu, instead of him helping you out he makes it look like he is needing you to lift and lay everything for him especially when you are unable to move out of bed yourself apart from just about getting up and out of bed to get to the toilet in time before being sick.  If you have someone like that he is most definitely not a keeper.

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.

IBD and Depression

Some symptoms of Crohn’s can also be signs of depression.  The crossover symptoms can include several manifestations of both body and mind.  Crohn’s disease does not directly cause depression however symptoms of depression are interrelated with the illness.  Crohn’s can sometimes magnify the symptoms of depression just like depression can magnify the symptoms of Crohn’s.

With symptoms being interrelated it can prove difficult sometimes to get a correct diagnosis and then get the correct help either from a therapist or counsellor or a gastroenterologist.

When you are displaying any number of the symptoms below it is best to go and speak to someone like a GP or if you have an IBD team to speak to them.

·         Loss of appetite

·         Unintentional weight loss

 ·         Difficulty falling asleep and/or staying asleep

·         Enduring fatigue ranging from weariness to exhaustion

·         Trouble concentration or memory problems

·         Loss of interest in former pleasures

·         Persistent anxiety

·         Irritability or even belligerence toward others

·         Feelings of guilt

·         Feeling helpless, hopeless, useless and worthless

Among these symptoms there is a domino effect that weight loss usually follows appetite loss and sleep loss follows by loss of energy and concentration.

Moping about

Sadness over situations is very normal in cases of chronic illnesses and pain but we all have to move forward at some point as it is important to move on.  If you do not try to move on it can lead to isolation.  Try your best no to put too many limitations on yourself such as, avoiding activities to the point you become housebound.  Try your best to be a participant instead of a bystander or an onlooker.

It is very important to remember you are much more than the sum of your symptoms you are dealing with every day, you always have choices and it starts with how you react to your disease.

I know from personal experience that it can be hard to see the bigger picture but every flare up does pass.  When you are at your lowest point try to plan something to look forward to or spoil yourself like plan a movie day or buy yourself a bunch of flowers or a bath bomb. By choosing an activity it is to help lift your mood and help you feel a bit better about yourself.  By making some changes it can help alter your attitude over time and help make a healthy emotional outlook.  If you do need extra help please seek professional help from your GP or a counsellor either to speak to them or if you think anti-depressants are the right thing for you.

When living with a low support network with Crohn’s can be particularly depressing and can usually feed your depressive thoughts especially when you are struggling.  Give yourself a break and allow yourself some time to regroup.  Allow your body to rest.

Connecting with others in a support network can be vital to successfully manage your Crohn’s and depression.  Besides local groups there are chat rooms, Facebook and other methods to connect to a community.  Within your support network either in a community or to a close family member or friend you should encourage yourself to open up and reveal your concerns and feelings.  You should try to share both your struggles and also your triumphs.  Some people find that giving support helps elevate their mood and help them feel good about themselves.  One thing that helps me the most is writing this blog as I know a lot of people across the world read it and many people can benefit from something within my
blog.

I live with both anxiety and depression.  Most days are a struggle but when I am struggling the most I have friends who understand and help me through it.  They may be close by like my friend who is like a little sister to me or they could be miles away behind a laptop or phone talking to me on Facebook.  But having them there is the most important thing as they know how to calm me down out of one of my episodes as some of my bad days I am constantly having dark thoughts.  Without my friends or my daughter I do not know where I would be now as they are who gets me through the day thick or thin.

When it all started

This is the story of how I found out that I had Crohn’s Disease. An estimated 250,000 people in the United Kingdom alone share a similar story to me. So why haven’t more people heard of Inflammatory Bowel Disease? Well, it’s not always easy to talk about toilet problems. It can be an extremely awkward topic to approach. However, spreading awareness could one day find a cure!
 
Crohn’s can be extremely tricky to diagnose, especially when symptoms first appear as they can be pretty mild. Like many people who suffer from an IBD, it was only after a multiple doctors’ appointments, misdiagnoses and many A&E trips that I finally got diagnosed in April 2013. Unfortunately, things went extremely downhill within a space of five months and I am lucky enough to be still alive today. By the way this will be quite long, so please be patient as it is about 10 years’ worth of important information going into this.

How it all began....

It all started when I was in my early teens, I was around 12 years old at the time and I had started bleeding so, I told my mum and she thought I had started my monthly cycles. So, mum explained everything and showed me what all I had to do etc. and left me to it. Looking back now it was not the cause, I was under stress at school due to being bullied from near enough day 1 of secondary school due to the fact that I was slightly plump at that time and for being smart.

Then as time went on I just did not feel like myself so, I was in and out of seeing my GP for blood tests for numerous things. The most common thing that they had found was deficiencies especially my iron, so they kept putting it down to anaemia. The doctors back then had always put it down to my monthly cycles to decrease the iron levels to where they were, so I was constantly given iron supplements until my diagnosis. Back then I had similar symptoms to Crohn's Disease but mainly pointed at the anaemia, such as; lack of energy, fatigue, pale complexion and hair loss, this was why they overlooked the Crohn's.

It was when I was 14/15 years old I kept coming down with a stomach bug every couple of weeks during the school holidays and my mum did not think anything different as most of my family had similar illnesses at the time. However, I was in more pain than what they were all in. Around this time, I was also told I had depression and a deficiency in my B vitamins. One doctor told me to think positively in school and ignore the bullies as the stress had lowered my B vitamin levels and told me to take supplements, which was of no use as things got worse in school and I could not cope with the bullying any more. So, back to the doctors I went again as my mum took me back as I was not my usual self and she thought my iron levels had dropped again, which they had but instead of coming out with just supplements, I was prescribed anti-depressants as well. The anti-depressants was only prescribed at this age due to me trying all other methods of help first i.e. counselling.

During the summer holidays when I was 16 years old, I got lumps all over my legs, that looked similar to insect bites but, with no bite marks, and changed in a ray of colours over a space of approximately 2-4weeks starting off at red, purple, blue, black, yellow and then green. The pharmacist had said they were insect bites and told me to go see my GP for a special cream to stop me from scratching at them as they were extremely itchy at the time. These lumps kept appearing and disappearing right up to my diagnoses every 4-6months. I had other symptoms such as, fatigue, lack of energy, appetite, slight weight loss and frequent but urgent running to the toilet. This was all put down to an allergic reaction to the insect bites and the extremely hot weather.

My legs looked something similar to this when I was told it was insect bites.

At this time, I had just started my first ever job with the company I still happen to be working for today and awaiting my GCSE results. Why I was panicking over my results back then I do not know as I had worked extremely hard for all of my 8 subjects and got all good grades.

When I started Sixth form things got worse as I continued with the loss of appetite, fatigue and weight loss. It got that bad my mum physically dragged me to the doctors and they put it down to stress of my A-Levels and anaemia. So, out I can with yet more iron supplements. Things still stayed the same for the 2 years of Sixth form and the doctors could not find out what the cause of my anaemia was.

My lovely iron tablets looked like this but it was an endless pile.

Also the lumps had reappeared and they were so bad, luckily at the time I had a broken tail bone and was allowed to wear my school tracksuit bottoms instead of my skirt and tights as anything rubbing up against my skin had me screaming in pain. So, my doctor had tested me for all the allergies possible without seeing an allergy specialist and all had come back clear apart from the lactose intolerance which I had known from when I was a child, so they ruled out pet and animal allergies, food allergies and coeliac disease. Back to square one again which was what the doctor had said.

Once starting University in 2010, everything had settled for a while, which I was relieved as I was near breaking point due to all the supplements after supplements and also being attacked by the vampires who came after endless blood samples. But as time went on and second year of the degree started everything started again, lumps, loss of appetite, extreme fatigue and some more weight loss. My mum put it down to the stress of finding a placement for third year, which was extremely hard to find a decent business in hospitality where I lived in the recession as most places were closing their doors as they could not afford to stay open. Thankfully my manager at the time had agreed to take me on under her wing to train me up as a decent hospitality manager. It was about a quarter of the way through the year that I had started to notice my symptoms getting worse and everyone was saying it was because I was working too hard in the gym, not eating enough or being in work too much (this last one was what my mum kept saying). But what they did not know was that it was not any of these that was causing the problem, but it was the start of a massive flare up with the Crohn's Disease.

In August 2012, I had a bad cough for about 3 weeks so, I went to see the doctor and he was not my normal doctor so, he thought it was my asthma playing up and said if it was still there in a week to come back again. A week later I had went back with the same problem and was given a dose of antibiotics. That did not clear it up so 3 more doses was given after the first and it eventually cleared it up. With the constant use of the antibiotics over a month my symptoms got slightly worse.

At the end of October, my Area Manager had come to see everyone in my unit saying that there was an important staff meeting  and everyone must attend. That was when we all got the bad news that the unit was closing down. We were all given the choice to transfer to another unit in England but, most of the staff had families all set up and did not wish to leave. Due to my placement terms I had to look for another place as soon as possible to finish my year and I had only done 5 months in that unit. I had started looking elsewhere but everywhere had said not a chance. So, I contacted my Area Manager and asked could I apply for the position in Manchester. I had to go through the whole procedure again of the interview etc. which did not help one bit as I was told differently on the day we were told my unit was no longer trading. It had took 3 weeks to get an interview and everything sorted out in Manchester and I had started to deteriorate even more.
 
By the time I had set myself up in Manchester and left my family behind near 300miles away I had lost a stone and a bit. I was sleeping most of the day, rarely eating, was severely anaemic, drinking gallons of anything but mainly energy drinks like Lucozade and also mochas. When I had been eating, I only ate soups, bread, pasta, cereal and Super Noodles, this was all I could stomach as the thought of everything else made me feel extremely sick. In December, my right eye had become all blood shot and felt like someone had grabbed it and tried to squeeze it. I had to go to the Emergency eye Clinic at the hospital and it was episcleritis.