A World of Our Crohn

It’s often incredibly difficult when living with a chronic illness to come to terms with the changes in your established relationships. This is an issue most people fail to appreciate may arise when they in the midst of dealing with their own pain and suffering. This is completely understandable of course, especially in the early days of a disease.

Most patients’ initial thoughts aren’t for those around them, as there is usually far too much information to be taken in from doctors and nurses from the get-go. But soon it can’t be helped and thoughts will naturally drift along to what must people on the outside of the hospital wards must be thinking. Of you. Of your disease.

For me, after vaguely managing to come to terms with my illness and the fact that I would be stuck with Crohn’s Disease for life, my worries turned to my loved ones. I became upset that my disease was beginning to affect them too. I hated seeing them suffer because of something I couldn’t control. I felt entirely to blame for causing all this additional, (and as I saw it at the time), unnecessary, stress. Of course I appreciate now that’s an entirely skewed view of things; the people this was affecting love me no matter what, and any worry related to my condition is part and parcel of that concern and can’t be helped.

One of my main concerns was how my friends, family and partner would perceive me following my diagnosis and eventual release from hospital. It wasn’t so much the cosmetic side of things, after all they’d already seen/heard/smelt me at my absolute worst... It was more how they may behave and the extent to which they would perhaps struggle to adapt to having a ‘sick’ relative.

Regardless of the illness, people around you can find it hard to gauge how to ‘deal’ with you post-diagnosis. You’ve suddenly become a ‘patient’ over a person and for some it can be easy to slip into pitying the individual or feeling you have to lighten the load, or withhold difficult news to spare their feelings.

At my lowest ebb I worried about how I would adapt to my new condition. I certainly hadn’t bargained on how others would feel as a result. I realised quickly I had to snap out of gloomy moods – I didn’t want to be pitied and I certainly didn’t want to be seen as a ‘health – bore’. The bottom line was that I didn’t want to spend all day everyday discussing my... bottom…  And I think, lovely as it is, most people around me would agree.

Friends and family of Crohn’s sufferers should try to remember that the person you love is still there, regardless of their illness. They haven’t changed.

..Well that’s not entirely true actually. They may have lost parts of their anatomy, or shed pounds, lost hair or found that they suddenly have a whole new appearance thanks to Crohn’s procedures or medications. Their outlook on life may also have changed; maybe they feel down or hopeless, or have spells of depression. But they still have the same heart. It’s still the same person you spent your childhood with, or watched/helped grown up, or fell in love with.

It’s important that those on the outside of the disease looking in sometimes try to remind their loved one of that when it feels like they are being lost to their disease. Think of it as friendly advice. This sort of steering has always stood me in good stead over the years. I would own a pair of knee high pink leather boots if it weren’t for a word in the ear reminding me they weren’t quite for me...

Crohn’s really isn’t ‘for me’ either, but unfortunately I’m stuck with it. Doesn’t mean I have to like it though, and I certainly won’t let it ruin the relationships I so dearly cherish.

 

 

My Body Don't Tolerate

I often have to remember that due to vast and varied selection of different symptoms involved in living with Crohn's Disease, it can be very important to establish some form of pecking order. What I mean by this is, that in order to carry out your daily activities, hold down a job, raise children (and/or a cat), see friends and family, and maintain a relationship, you often have to gauge which of your many symptoms are tolerable, and under which circumstances more definite action is required.

I find it hard to get a balance on a daily basis of what the disease will allow me to do.

I feel pretty rotten in varying degrees every day. Some days I feel worse than others. Some blissful days I barely have a symptom. It's hard to explain this to people who don't suffer from a chronic illness. Many think its an exaggeration but I only wish it were. I don't in any way mean to sound dramatic, I'm just stating the facts.

 Although Crohn's is most widely known as a condition affecting the bowels and intestines, it's much less commonly known that the disease can affect the whole body too. 

For me the main offenders amongst these side-symptoms are arthritis, scalp and skin issues, bloating, headaches, hot and cold flushes, dizziness, anaemia and fatigue. 

It's trying to establish what qualifies as 'unwell' when it comes to what you can and can't do that can be an issue.

I have a personal tolerance level where pain is concerned. Before my surgery I was in constant and often utterly unbearable pain. I couldn't stand upright, could barely walk and the pain was relentless, sharp and piercing. Often like being stabbed in the gut with a hot poker. (I would imagine..).

So I know now what I can handle - not enjoy - handle. Tolerate. Therefore on the flip-side I know what I can't. I know how long to allow my body to put up with the pain before getting it the help it needs and I know who to call if I can't cope and need to go to hospital.
Having this mental back-up plan and fore-knowledge is strangely reassuring. This is why when people see me running to and fro from the toilet, and worry I'm having a tough time, I can say without having to fib, that although I'm maybe not at my best, I'm coping.

 

Crohn with The Wind

One of my favourite of many beloved Bowie lyrics is; "Don't let me hear you say life's taking you nowhere.."

It resonates with me because I've spent a lot of my twenties in a constant state of panic about my impending future. Filled with endless worry about what little I've achieved in my life and the closer I hurtle towards my thirties that panic has only increased.
In my late teens and early twenties I spent a lot of time complaining that the reasons I hadn't met my then goals were for an inordinate amount of different reasons. None of which were apparently my own fault. I'd mentally blame my apparent failings on countless (imaginary) misfortunes life had bestowed on me; anything to take the blame away from knocking on my own door and in a vain attempt to turn down the heat on the pressure cooker that was my brain.
In reality all this did was make me feel worse as I knew I was lying to myself. 
 

If you want anything in life only you can make it happen. Outside of the glossy films and teen shows we are subjected to throughout our childhood, 'normal' youths aren't handed the dream job, perfect husband/wife, beautiful house, and the keys to Daddy's mercedes on a platter. But as Bowie so beautifully insinuates, no one wants to hear you complaining about it. Especially when at that age we are still full of so much potential. 

So what of illness? What happens to those heady hopes and dreams when you are told you will be sick for the rest of your life? 

Well, regardless of the age at which you are dealt the 'incurable' blow, the same rule always applies. 

Get. On. With. It. 

You might find whatever 'it' is, is now all of a sudden about 45 million times harder, and you might find you have to alter your ambitions a little (or a lot) to fit in with your new life, but you shouldn't and mustn't ever let it stop you. Illness (especially of the treatable variety) should certainly not give you cause to be 'excused' from going after what you want. Although i'll admit 'being excused' is something you'll have to do a lot if you have Crohn's Disease.. 

I currently find myself in a comfortable position. I still want more from my life, I would say I'm still am not where I always dreamt I'd be, but I'm HAPPY.
All the worries of my life Pre-Crohn's Disease seem utterly juvenile and insignificant when compared to what I've been through physically and mentally in the last few years. That doesn't mean I still don't want some of the same things, because I do, but now that list of Wants disguised as Needs has been scored out and replaced with Health and Happiness. 
 

A disease as unpredictable as Crohn's has a way of interfering in your everyday plans, so it's incredibly important you learn to adapt and make the absolute most of the times when you are well. Give yourself amazingly happy memories to enjoy when those times when you are feeling at your lowest ebb arise. Don't complain about what you don't have but embrace what you do. 

I don't feel at the age I am now that I've achieved everything I want to in life. Not by any stretch of the imagination. I'm not sure anyone I know or have ever met, has. Maybe even my beloved Bowie still wants more out of life..

But I know I can do my utmost to get to where I want to be. Disease or not.  

It'll be a huge challenge and probably knock the stuffing out of you trying to get what you want in spite of your Crohn's Disease, but lets face it, if it was easy where would be the fun in that?

 

Queasy Peasey

If you follow me on Twitter, know me personally, or even watch me from afar, you'll know that I spend a lot of my time on buses. This is an unfortunate necessity for me as I'm too lazy to learn how to drive and not anywhere near rich enough to hire a chauffeur.

Having a Chronic illness  is hard when you are at the mercy of public transport. Well it's pretty bloody hard most of the time but for the benefit of this post we are focussing on this foible of mines on particular. 

With Crohn's Disease I often feel the sudden urge to rush to the bathroom, queasy and on the verge of vomiting at any moment, and faint a lot of the time. One of these issues is difficult enough to handle on it's own whilst whizzing around town with a bunch of grumpy strangers, let alone when you are dealing with all three. 

Three is usually the magic number in my case as all three more often than not go hand in bowel. 

The sweats start, then I feel dizzy, then queasy, then faint, then icy cold, then the urgency to go the loo strikes, then back to queasy again and this cycle continues until one of the 3 wins the race and annihilates me first. 

I've never had 'an accident' on public transport, or outside of the comfort of a bathroom for that matter, and I've never fainted on a bus either. I have been sick on one though, and fainted and threw up in public an inordinate amount of times throughout my life. 

Being sick is almost a hobby of mine. Not one I enjoy or particularly relish to be honest (yuk, relish), but the amount of time spent doing it could certainly lead it to be called one.

Whether on a bus, or in a car, a plane or on a jet ski, throwing up or passing out in public is certainly never pretty and unfortunately never acceptable, even in this day and age. 

In my experience, if you throw up/pass out  in public you are either drunk, on drugs, haven't eaten, too hot, too cold, travel sick, or a combination of all of the above. [The only place these rules don't apply are in hospital - being sick in there is totally fine by the way.]

I run through a mental checklist when feeling nauseous on the bus; 

1. Is there a window near me I can open without irritating my fellow passengers? 

2. How far am I from home? Can I walk the rest of the way?

3. How many layers of clothing can I remove before becoming indecent? 

4. How far am I from the hospital? Can I walk? 

5. Do I have my sick bag? If not what can I use in an emergency? 

6. Are my lips blue yet? 

7. Would any of these people give a hoot/call an ambulance/notice, if I dropped to the floor right now?

8. BREATHE IN. BREATHE OUT. 

This daft checklist is the only thing that keeps my mind focused when I feel like death in public. If I can answer yes to any of those questions then I might just be ok. It's amazingly important not to let the panic set in otherwise you will probably end up projectile vomiting over the entirety of the No.27 and all it's occupants. Whether you want to or not. Keep calm is such a cliché these days but it's still very important to remember.

But that's me arrived at my destination now with my insides intact so this blog has served it's purpose as a wonderful distraction ;) THANK-YOU x x 

Crohn Together

The 19th May 2013 was World IBD Day. ('Inflammatory Bowel Disease' to the uninitiated). It was a day where people from all over the World were helping in any way they could, big or small, to raise awareness of our conditions, and some cases in trying to raise money for IBD related charities.
Crohn's Disease and Ulcerative Colitis are two of the most well known and life-changing bowel conditions around. Of course when I say 'well known' what I mean is that you will be aware of them if you are a doctor or have a family member or friend with the illness. Or have it yourself. Otherwise, these conditions (incredibly prevalent across the UK alone) are still a bit of a mystery to many. That's why these events are so crucial. We need to make people aware that what we are dealing with is not shameful, should not go unspoken and that our strength is something to be admired not pitied.
As I've mentioned previously in the blog I had no knowledge whatsoever of Crohn's Disease until I was told I had it. The terror there was that I was told one minute I had Appendicitis and was getting my appendix out, then the next the news hit that I actually had and incurable illness I'd never even heard of.  Bit of a difference and pretty difficult to get to grips with.
Amongst other things, World IBD Day is prominently an opportunity for people suffering with these conditions on a daily basis to be heard by the wider world. To speak out about the trials and tribulations we have to endure day by day and for the remainder of our lives. The day is a chance for us to clear up misconceptions about our badly behaved bowels, and make others see that we are still people, not just patients. It's also a chance for us to take part in events all over our own parts of the world and involve those close (or not so close) to us too.
For my small contribution to the big day, I was invited to go to Birmingham to take part in an IBD Day Symposium. An event set up and organised by patients, for patients. It was the brain-child of Claire Hunt (a Crohn's patient and massive fundraiser for Crohn's Disease all across Britain and beyond) and John Bradley (the author of Crohn's tome 'The Foul Bowel' and Crohn's sufferer of over 20years). I was flattered to be asked and honoured to be involved in an event with such Crohnie Royalty ;)
Our event was held in Birmingham Children's Hospital and speakers were invited to share their experiences of living with IBD in their own words. I was asked to talk about 'Reaching Out' with my disease and in particular, blogging about Crohn's Disease.
It's a subject I'm obviously well versed in, but my public speaking skills leave a lot to be desired.. I put in plenty of practice before the event; trying to slow my Scottish speed-talking down to below 500mph and in attempting to remember I'd have an audience to look at and not just my feet.
After travelling down to Birmingham and meeting everyone I was much more at ease. Some of these people I'd chatted to and learnt from for several years and up until then only seen in tiny Twitter box form. Lots of fun. I found myself completely inspired by the speakers and in particular the younger ones. They have had so much to deal with at such a young age and yet show how strong they are and how they are looking to their futures with nothing but positivity and hope, in spite of an incurable illness. Only a stone-hearted person could fail to be encouraged and humbled by their stories.
My talk went down well and apparently no one could tell my knees were knocking and hands were shaking the whole way through. It gave me a heap more confidence and encouraged me to continue writing. The event was a success, everyone had a lovely time and left feeling a lot more positive about their own condition, or that of their loved ones. I left feeling emotional but comfortable in the knowledge I'm not and never will be alone in my fight.
I want to help people like myself who are coming to terms with their illness. It's a struggle for everyone, whatever age you are diagnosed. It's a life changing time and can be utterly terrifying. It's important to remember there is always support out there in one form of another for everyone.
You don't have to look far to find it either. You've found this blog so you're already on the right track ;)

'Maybe she's Born with it, Maybe it's Crohn's Disease!'

In undertaking what would appear to be a miniature vanity project (or as I disguise it; ‘research’), it would seem that the most popular post on my blog is 'Hair Today, Crohn's Tomorrow', and the most searched topic, is ‘how does Crohn’s affect your hair?’ or ‘My hair is falling out with Crohn’s!’. The same question is asked again and again in a similar style in varying degrees of panic and with incredibly varying degrees of bad spelling. *shakes fists*

For me it’s an issue I suffer from regularly and if this tiny bit of ‘research’ is anything to go by it seems I’m not alone in my hairy worries.

In considering writing about the misfortunes of my follicles again, I got to thinking about my body as whole. My mind tends to drifts from time to time and I have to take a moment to appreciate what the big man upstairs blessed me with...
No, what I mean by that, is that along with the headache that is my head, Crohn’s also affects multiple parts of the body on the inside as well as the inner. Although, it is definitely a MASSIVE blessing that the ugliness on the inside stays there.
It’s true to say that feeling like Crohn’s is ruining the outer shell too can be depressing. One of the few positives about suffering from Crohn’s is that it’s ‘invisible’, meaning you don’t necessarily have to tell anyone you are going through Hell on the inside because they normally can’t tell on the outside. This isn’t always the case though as often the disease makes itself known in your physical appearance in little ways that no amount of Maybelline can fix.

So what can be do to keep these horrible little foibles at bay? From the experience I’ve gained in living with Crohn’s and in having skin and hair and stuff, I’ve taken the liberty of compiling a small list of tips I’ve found to be a help in keeping the outside looking a million times better than the inside.

Hair Loss

There are many causes linked to hair loss with Crohn’s. In the majority of cases this particularly awful affliction is caused by drugs and the medication we unfortunately have to take to keep our disease under control. There is usually little can be done to help delay or ease this; discussing increasing your Folic Acid intake or starting Biotin, Zinc and various Multivitamins and supplements with your Doctor can be a good place to start. Other more natural solutions to ease a sore scalp and help treat your hair are to create a mask with Olive Oil – coat the entire scalp, wrap for up to an hour (depending on the amount of hair you have) and wash thoroughly. Another tried and tested tip from a friend would be to create a mixture of Olive Oil, Honey and Egg and massage into scalp for up to 20minutes. Anything with Vitamin E and Jojoba Oil are also lovely. If nothing else these help to keep the hair in good condition and stop the scalp throbbing quite so much.

Dry Skin

This is something I only began to suffer from after my surgery. My face is the worst and during flares can really break out, especially around the nose and forehead (which is most of my face to put it bluntly). Oil comes into play again here, a good tip is to mix together Olive Oil and Castor Oil then gently spread evenly over the affected area. Remove and repeat a few times until the skin feels soft. When I was younger I read somewhere that Honey on the face was a good tip to keep it soft, this led to an embarrassing moment when my Mum walked in on me in the bath, but needless to say it was a mess but does the trick.

Mouth Ulcers

Drink plenty of fruit juices where possible as lack of Vitamin C can be a major hindrance. Always ensure you are keeping your whole mouth as sparklingly clean as possible by mouth washing along with brushing. Mixing a solution of Sodium Bicarbonate and water is a good way to cleanse the mouth if no mouthwash is available. When ulcer-ified avoid foods with sharp edges, like crisps toast and nuts. Also stay away from chewing gum as it can lead to biting the inside of the mouth. A couple of final weird but wonderful solutions are Peppermint Oil and eating raw onions. (Obviously in a salad or something please don’t start chomping on a raw onion, it’ll only end in tears) Ahahahahahaha…. Ha..ha..   

Red Raw Rear-End

Steer clear of perfumed products when cleaning that area and avoid flannels and sponges or anything that may irritate the skin. Do not rub, and stay away from talcum powders and lotions and potions. Wear cotton drawers when you can and finally, WET WIPES ARE YOUR NEW BEST FRIEND.

Ache Me Up Before You Go, Go

Crohn's is like an irritating alarm clock from time to time. One minute you are in heaven, blissfully unaware of the terrors that will await you when it goes off. The next, it does and it's in turns immensely irritating and depressing. It's an annoyance and often comes at a time when you least expect, (or want) it.
Like an alarm, Crohn's is there most days, for me usually making itself known most prominently in the early hours of the morning or at mealtimes. It strikes with such force and audacity that it has become the most hated of all my inanimate objects. (The fridge and I get on better now since that awful period in 2011 when it left the Iceberg lettuce disturbingly flaccid after only being inside it for 24hrs).

The unpredictability of the condition is something that most sufferers find very difficult to adapt to. If they ever do at all.
It's the interference in one's day to day life that grates most for me. I hate the idea of making plans, looking forward to said plans, building the excitement of said plans, getting dressed and raring to go then requiring excessive toilet time, vomiting all over your brand new Primark number, being struck down with blood curdling pain, or all of the above.
I hate cancelling on friends and family, especially at the last minute. I know they understand, they truly do, but it can't be easy on them either. Plus, if I may be permitted to be teenage about it for a minute, its SO UNFAIR!! Why can't I just once enjoy myself without worrying about the consequences?! Other people do it! Some every weekend! Some 3 or 4 times a week!! (I'm not entirely sure what the 'thing' I'm talking about is anymore..)

Crohn's Disease has a few cheeky ways of reminding you who's boss. It has a hold over sufferers that it seems unhappy to let go of from time to time. Of course I'm well aware I have a life-long illness, but does that really mean I have to think about it 24/7 baby 365? Apparently the answer is a resounding 'yes'.
I have days when I am 'well' and even feel 'good' - but I will still have to ensure I am watching what I eat and looking after myself. I have a barometer of pain - a twinge is just a twinge, a sigh is just a sigh.. But when it's bad it's BAD. I then have a further barometer of, ok it's bad, but how long will this last? Can I make it through the next few hours without passing out?
This may sound melodramatic but it's a genuine routine for me. I'm not looking for sympathy, because I am 100% grateful for the days when all is well with my lady-bits. It still doesn't make the unpredictability factor any easier to deal with.

It's important to remember that when Crohn's acts up and tries to take you down with it, to maintain what you can of yourself. By that I mean; although you may be floored (often literally) by the physical aspects of the illness, don't allow it to infect your brain too. Don't let your emotions get the better of you and allow it to bring you down. I truly believe that just makes it harder to get out of.
Try to think of my alarm clock metaphor - yes, its an irritation, but as we know an inevitable one, so we might as well stop hitting the snooze button and just get on with it.