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flare up symptoms I was getting it was different and now we know why as it had moved into my small intestine and was no longer active in my large intestine.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).

Self-esteem and Chronic illnesses

Living with a chronic illness such as Crohn's disease, you have to deal with a load of shit (both literally and figuratively speaking).  Not everyone suffers the same as everyone is affected by the disease symptoms but also the side effects of the treatment they are receiving.  Some of the symptoms like the ulceration in your stomach or colon are not visible unless you have an endoscopy or colonoscopy, but there can be side effects which can be physical too. Self-esteem being one physical manifestation as it can take a hit when you are struggling with side effects like weight loss, facial swelling and weight gain due to steroid treatment and acne too.

Edema is causes by dehydration and malnutrition which is usually caused by rapid weight loss during a flare up.  It is hard to keep things down and keep them in when you are running a marathon to the bathroom between 10-20 times a day or even more. Fluid and nutrition is easily lost. An IV saline drip is usually the best method to help dehydration but if the body is lacking protein, edema can occur.

Edema is the lovely swelling caused by fluid retention.  So after a drastic drop in weight such as 11stone 7pounds to 6stone 8pounds in a period of 6months could find yourself swelling up like a human balloon.  Edema is much harder on the body than you can imagine.  When you are either lying up in the hospital bed all day with little or no energy at all, the muscles become weaker.  This makes the swelling feel a lot heavier, in turn making it harder and more difficult to get out of bed.  The edema can surprisingly cause back pain due to the pressure on the nerves and muscles.

Without an IV saline drip the fluid weight can be lost within 2-3weeks.  Unfortunately this will bring you back to an unpleasant state of being underweight.  This is definitely not glamorous at all in the slightest.  After such a drastic weight loss we usually try to regain it as quickly as possible depending on how much we have lost. It can be a long and slow process.  Last time I had lost a lot of weight that I needed to regain was after my massive flare which lead to my diagnosis of Crohn's disease back in 2013.  My normal weight before I had my daughter Alisha fluctuated between 65-70kilograms.  After I had her I could not shift the extra weight I put on during the pregnancy or afterwards as I had been put on the lovely devil tic tacs, prednisolone for just under 5mths due to my medications causing really bad liver inflammation. My normal weight is still not decided yet as 2years on I am still trying to lose that extra weight as I was over 100kgs.  During the transition period I felt really awkward and uncomfortable but more so after I had Alisha as I was already down about my weight and then adding steroids into my mixture of medications it made me feel worse.  Worse in a sense that I refused to go out and about to the shops, baby groups and other places.  They were the days I felt very discouraged to go out anywhere even when I had a lot of energy and it was because I did not want to be seen in such a state. 

On top of all the weight fluctuations, the usual treatment for Crohn's disease is steroids to control a flare up and for Fibromyalgia is a form of anti-depressants to control the pain. Both come with side effects and the most common are weight gain and acne unless you stop the treatment it seems to stay for the full treatment course.  I despise the acne as no matter how much I cover it up with make-up it is not always 100% effective and I have noticed it can make it even worse.  I know most men would not be plastering their faces in concealer if they have really bad side effects from the steroids which leaves them with even less options to cope and manage it.  Along with the horrible little red bumps that appear all over your forehead, cheeks, chin, chest and for me along the jawbone near my ears, steroids especially prednisolone causes facial swelling.  Everyone deals with it differently some worse than other. I usually suffer really bad with "moon-face" and look like a human sided hamster when I am on them to control my Crohn's disease. 

All of the side effects can make it extremely difficult for anyone to feel confident and happy about themselves which is very important during the recovery process.  Even when you do not feel like going out, but being locked up away from other human beings can be detrimental as well.  Locking yourself up away from others can cause social anxiety, generalised anxiety or even depression.  After I had Alisha I was diagnosed with social anxiety and depression as I only seen her and her dad on a daily basis and anyone who came round to visit like the health visitor for the most of her first three months.  If you get hung up on how you look now (which is only a temporary state in which your body is in) you can make the recovery process even harder.  If you do not feel back to your 100%, remind yourself in time you will be in a better place both physically and mentally. 

 Tips to try to boost your self-esteem:

• Go exercise. Exercise can help boost my self-esteem especially during my recovery process with any of the things I suffer from. Yes even when my Crohn's is flaring up and the only exercise I want to do is running to and from the bathroom just that little bit of a walk outside is all it takes to help. The exercise does not have to be in the gym it can be a walk around the block, a run around the park, lift some weights at home (if you have any or you can compromise with using something else like a shopping bag full of tins).  Just a little bit each day helps build your self-esteem and it also helps to build back your muscles and boost your overall mood.
• If you have insecurities about your weight either being overweight or underweight, usually wearing baggy clothes help make things less noticeable. There are very slim chances of anyone even noticing your weight and size.  It is what is going on in your head about your weight that is the big deal. Do not forget it is only a temporary state your body is in it is not permanent and you can work on it over time to get it the way you want. Just do not take it out on yourself as it will not help your self-esteem. You are beautiful no matter what as it is your personality and character that matters the most not your physical appearance.
• Do something that makes YOU happy!  Write, draw, watch movies, read, go to the gym or go out with friends for a coffee. Do something to make you happy and put a beautiful smile on your face. Not everything has to have a lot of energy to do something for yourself if you are not up to it.

Your appearance changes more frequently than you can imagine.  Some seem more drastic that others because the only person who knows your body the most is yourself.  Sometimes it is best not to care about the changes depending on what they are.  Do not stress as it does not help as it usually makes everything seem worse than what it actually is.  You have to just put your mind to what you want to achieve and concentrate on that and work towards that goal. Do not set very short goals as they are not easily achievable and can cause even more stress.  If you wish to lose weight do it by changing your lifestyle not follow strict diets like weightwatchers or slimming world they are not easily maintained I know that from experience.  Set a goal that can easily be achieved like losing 4kg in 2months is achievable and not full of pressure to cause a lot of stress on yourself.  It is achievable and can easily be maintained afterwards.

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.