Crohnly Love

As its the season of love, and I haven't blogged for a wee while, I thought I'd take a minute to wallow in the romance of the last few days. Yes I know technically Valentines Day was yesterday but so what? You're not the boss of me! Back off!
In the spirit of Cupid firing his bow all over the shop, I got to thinking about my own personal love affair.
With my gut.
Its a torrid romance with so many ups and downs we are considered by many (no one) the Burton and Taylor of our day.
The bottom line (pun ALWAYS intended) is that my life would be much, much easier if I didn't have Crohn's Disease. I would be free from worry, and the pain and misery it can bring. I'd be able to do my own thing without having to consider how my guts will react first.
But of course the same could be said for any relationship. When things are difficult thats all you can focus on. In the midst of the anger and upset you can forget the positives in the blink of an eye. The difference between most human relationships and the one I have with my gut is that we we didn't have a choice, we were forced together. Like some awful arranged marriage when 2weeks in you realise that you are just NOT compatible.
Regardless, I love the bones of my gut. (Yes I know that doesn't work but just go with it..).
If my disease and I would were to be parted I think i'd miss what Crohn's has given me. Everyone wants a cure for the illness, including me of course, and if that day ever arrived I'm pretty sure I would grab it with both hands. But I also think I'd feel a great sense of loss at what we've been through together.
I don't like to think of my condition as poisonous or massively negative. That doesn't mean it's easy. But like any relationship it has good points and bad. If Crohn's was ever to leave me I'd want to look back on what I've gained and not focus on what I'd lost or missed out on. Like any former flame I'd take the time to see what good we've done one another.
Plus, I know for a FACT, Crohn's would never take my David Bowie CDs and never return them...

Tea and Crohn's

Although clearly I am well aware that I have Crohn's Disease, it sometimes still irritates me just how much it has to be factored into my day to day life.
I try my best to have a 'normal' life. Whatever that is. I hold down a full time job, see friends, cuddle my cat, run a home with my partner, have hobbies, cuddle my cat, see family, have a social life, cuddle my cat, shop and pay bills. But often, and incredibly annoyingly, my illness needs to factored into all of these things. Pre-cursed by Crohn's if you will.
For example, if I go for dinner I have to think carefully about what I'm going to eat. However, things like red meat or cream aside, it usually doesn't matter what I have because I'll be bloated and squeamish regardless. I decide what I'm going to order based on several factors:

1. What am I wearing?
Are my trousers loose enough to deal with my rapidly expanding waistline? Is my too long enough for me to cheekily undo my top button without attracting attention? Might sound silly or an exaggeration, but with Crohn's Disease a tight waistband is LITERALLY THE DEVIL.

2. How much have I already eaten today?
Do I have room for anything else? This depends on how much I've eaten already in the day and how often I've been to the toilet. I usually feel full after a couple of biscuits so the thought of a full meal is often an intimidating prospect.

3. What happens after dinner?
Am I going home for a lie down or are there other plans? If I go crazy and pig out there is not a chance i'll be able to tolerate a night out without feeling I'm carrying around a lead block under my jumper and looking like I'm 8 months pregnant.

4. Do I have pain relief?
There's little point in bothering going on a night out without taking painkillers with me. I know I'll be in pain or some level or another regardless of what I eat, so it's always best to go prepared. Although not too prepared, as I found to my dismay after trying to get into a nightclub packing what looked like a miniature medical cabinet in my handbag. I totally appreciate how it must look to strangers but as IF I'd give away MY drugs..

5. Who am I with?
Will the person(s) be cool with me having to pack it in early? It's often difficult to balance keeping your health in check with keeping other people happy. Of course anyone would say 'No it's fine!' but often their face says different. I've been 'jokingly' accused of using my disease as an excuse to get out of things in the past, which is both ignorant and offensive. Although i'd use it as excuse anytime to get say from those types of people.

These are just a few of the BORING considerations I have to make before settling down to a meal. I love food. So I hate having Crohn's. I want to enjoy a meal without worrying about the consequences but this simply isn't possible.
I think have a slightly skewed view of food now which is unfortunate. I probably see it as a negative thing. Because I know it'll cause me pain and discomfort, it doesn't seem enjoyable anymore. When I couldn't eat anything or when I couldn't tolerate anything but yucky shakes I fantasied about nothing but food. It's essential for survival. The idea of getting what you need from liquids only feels intrinsically wrong. For a start where is the chew factor?! It's all wrong. But when you can't digest food what alternative do you have?
On the whole I'm mostly just happy I can eat without the same level of pain I was in before my surgery. I think about food A LOT. I get upset sometimes and kind of frustrated that I can't enjoy my food like other people, but at the end of the dairy milk I value my health more. Its not like i'm obsessed or anything..

The Crohn Collector

I did a silly thing today. I let something wind me up so much that I nearly burst into tears. At work. In full view of the office.
I heard it on the intestine, that this person has lied about having a condition brought on by years of having either Crohn's Disease or Ulcerative Colitis. This person doesn't have either.
I got upset, because I do. And because I can't begin to understand why someone would want to lie about this.
Crohn's is a horrendous illness to live with.
I hold down a full time job with a Chronic illness. I don't mention this because I expect any thanks or praise for it - if I'm able to work of course I will, I need to learn a living, and would never take advantage of our welfare system knowing I'm able - I just mean to express that although I am working, it doesn't mean it's not a struggle for me on a daily basis to even so much as get out of bed in the morning. I'd love to have the luxury of not having to stress about work and tire myself out and worry about bills. I'd also love to not have had a piece of my body cut out in order to save my life, but that's life. My life.
I understand, as I've come across it at various times in my life, that some people find it a way of life to lie and elaborate on illnesses they do not have. They think it will give them some sort of leg up in life, garner them the attention they so desperately crave, or, and this is the one i'll never personally understand, gain the pity of those around them. Maybe I'm just getting cynical the nearer I come to the big 30, but never at at any point in my life, has any good experience ever followed being pitied.
Now, for those of you who may be reading this realising i'm perhaps talking about you, or someone like you, as i'm sure even you are not naive enough to think you are unique, let me tell you a little bit about what it's like to live in pain on a daily basis. For your information of course, (as you may want to bulk up your story a little), or, in the hope that you may take a moment to realise why what you are doing is offensive and sickening and very, very tragic. Here is a little insight.

6a.m : I wake up and rush to the toilet. This will be about the 5th time I've been this morning. I often worry I've had an accident in the night, although thankfully this has never happened to me (yet).
6.20 : I brush my teeth and shower. This hurts. Everything hurts. It hurts because my gums ache constantly from the ulcers I get when I have a flare up. My bones ache because of the Crohn's related Arthritis I have and the joint pain I suffer constantly.
It hurts to wash my hair because it falls out in clumps and this stings my scalp. My skin prickles all over because it gets dry and painful when I feel at my worst.
6.40: I take a few minutes to calm down and regain my strength because I'm now hot and dizzy and faint from having stood up for so long.
6.45: I get dressed and paint my face. Usually thinking all the while that this is a fruitless exercise because I'm so pale and feel utterly lifeless and that how I feel inside is written all over my face.
7a.m : I think about breakfast. I make a cup of tea then rarely drink more than 2 sips of it because I know I'll have to rush to the toilet again and I can't risk needing to 'go' when I'm on the bus. I think about whether or not I can tolerate food and what the consequences would be if I had a bit of toast. Will I need to throw up in 10minutes time? Will I have to go to the toilet in 20? Can I time both of these things before I leave? My morning is based mostly around my colon and meeting its every whim.

I won't bore you all by yapping on about the remaining 20 odd hours. But that's a snippet of what my day is like before I even leave the house in the morning.
I feel tired all the time. I feel sore and achy all the time. And I feel pain of some description ALL. THE. TIME.
If you are lucky enough to get through the day without feeling like a limp rag on a daily basis, please don't pretend you are hard done by. You have a life so please live it. Don't waste it by wishing yourself in my shoes, because believe me they won't suit you. I have impeccable taste (and tiny feet).
Spending your life wallowing in misery is both incredibly unhealthy and unbelievably unappealing.
Maybe it's because I know how precious good health can be that I feel so strongly about this, but it's heartbreaking to see people around me openly squander something I try so hard to achieve on a daily basis. Normality.
Allow yourself to enjoy life and don't insult others by implying you know what they are going through. Just listen and be there, don't absorb problems as through they are your own.
People don't tolerate lies for long. It's important to remember how hard it ACTUALLY is for people dealing with genuine problems. Please don't pretend you have the first clue what they are going through.
Me, I might look sickly and frail at times, I might rely on medication and pain relief to get me through the day, but I have fighting spirit in doses I've never had before.

Crohn Fishin'

It is now, as you may or may not have noticed, 2013. A brand new year.
Aside from spending the next 3months accidentally dating forms '2012' and getting increasingly frustrated, this is usually the time of year we start to look ahead to what we want for ourselves in the coming 12months.
I don't make resolutions. It's not that I have any problem with people who do, I just generally see people getting lost in a haze of pouring alcohol down the sink, spending fortunes on gym memberships and slapping nicotine patches on their arms, (sometimes all at once..), and think that's not for me.
Not necessarily because I am lacking in enthusiasm or will-power, but because I feel there are other things I want for the year ahead : things I want to look forward to, not metaphorically beat myself up for in 6weeks because I haven't lasted that long without a cheeky Baileys.
With Crohn's, your priorities tend to change. Things that were maybe the height of importance to you, post-disease, are now relegated to the bottom of the list.
Take everyone's favourite New Years resolution, Losing Weight..
I am by no means overweight, in fact I'm probably about right for my height and what doctors would consider a "healthy" weight. So I have no intention of trying to lose any of that. I do however want to try and tone up and get some sort of definition on my stomach/thighs. Not the worlds hardest task, but still one that requires a bit of time and motivation. Sorting out my tum is not just aesthetic though, because like most women I'm not and never have been particularly happy with my body. Its also a chance to show the world I'm not in the slightest ashamed of my scar and what i've had to go through to have it there.
I've spent the past few years struggling to eat and maintain a steady weight. At my worst I could fit into a size below a 6 (is size zero even a thing here? if so, I was it). I hated the way I looked, gaunt and skeletal. Clothes hung on me like I was a pound shop clothes horse. This probably helped to confirm my view that there is nothing attractive about seeing a woman's bones through her flesh.
I'm not saying I want to be any bigger than I am at the moment, but I don't want to lose weight. In my Crohnie world losing weight means losing a grip on my health and letting Crohn's creep in. I see my disease at times as a nasty wee piranha nibbling away at the good bits and leaving me with all the bad.
So I don't want to spend 2013 'watching my weight'. I do however, want to go fishing and make sure I keep that nasty little nipper at bay..

It'll be Crohnly This Christmas

Itll be Crohnly this Christmas

Depending on your religious persuasion, Christmas can mean many things to many people. Religion aside, for most people, regardless of your faith, (or lack of), it's traditionally a time of over-indulgence. A phrase that in itself can strike gut-wrenching fear into the heart of any Crohnie.
Don't get me wrong, I love Christmas. I love getting to spend time with my loved ones and fighting with family i haven't seen for 12months. I adore exchanging gifts that we've bought one another because we care and because the adverts say we have to. I love decorating the house and getting into debt along the way. Joyous.
No, I joke (sort of). I do enjoy Christmas. I always have.
However now my feelings towards this time of year are a strange mixture of excitement and nerves. As ridiculous as it may sound I also feel a vague sense of loss. At how much I used to enjoy the aspect of over-eating and drinking.
With Crohn's your body has an annoying way of telling you in no uncertain terms when you have HAD ENOUGH PUT THE CHIPOLATA DOWN. A phrase heard painfully often in my life.
Some would think this is a useful tool for ones body to have, a sort of early warning system that gently reminds us to cease eating for fear of feeling like a sumo wrester later. Only it's not a 'gentle' reminder. It's agonising cramps in the stomach, sickness, sweats and shivers, rushing to the toilet and feeling faint. Celebrate good times c'mon!
The first Christmas after my diagnosis I was on a liquid diet. And I don't mean I was being all Scottish about it and knocking back the sherry from 8a.m.
Unless you have been through this you have no idea how difficult it is. A diet of only milkshakes that aren't even milk in the most vile flavours imaginable. My personal favourite was Rotting Corpse, (although they lied and wrote 'Forest Fruits' on the label).
Surrounded by a massive table of food and drink I had to suck on Rotting Corpse from a wee straw. This made not only me miserable, but my whole family uncomfortable and sorry for me. I think at one point there was even an offer of introducing some turkey to the liquidiser. I politely declined.
Thankfully this Christmas will be much better. I'll be able to eat (in moderation) and drink (in even more moderation). I will attempt to pace myself, and maybe only have one selection box for breakfast instead of two. Only 3 baileys before dinner instead of 12 and just have a wee sniff of the trifle.
I'm dreaming of a pain-free and FUN Christmas for me and YOU.

Merry Christmas x x

Diseasey Street

This past week I've been a physical and emotional write off. I've had (and still have) a horrendous flu-chest-throat-head-bug-thingy (to give it it's proper medical name) that I'm struggling to shift.
This may sound like a mere inconvenience when you consider I have an incurable disease, but that's exactly my problem; I already have Crohn's, why do I have to put up with this nonsense too?!
Obviously as Crohnies, we are far from exempt from other health issues, in fact the opposite, we grab any bacteria and germs flying around and clutch them to our bosoms like selfish lovers who won't let go. It's our crappy (pun intended) immune systems that cause our bodies to go temporarily insane and collect as many other problems as we can like some kind of macabre hobby.
Plus, having the disease also means it can take a ridiculously long time to shake these things off. Talk about mixed signals, body.
So this week I've lost my voice, had a perma-headache, had streaming eyes, running nose, blocked nose, felt faint, legs like lead, zero energy, zero appetite, sweats and shivers, and a cough to wake the dead, amongst others. Lovely.
Now I know this is all natural during the first flush of Winter. My problem is that I can't just get over this type of thing like a 'normal' person. I have to deal with this AND Crohn's. if anything that makes it even more annoying in my eyes; why can't I deal with this when I'm coping with Crohn's everyday? I get frustrated at my own body for being so bloody useless.
Now my partner takes a different view on this. He thinks it's kind of romantic to him in a way that I'm ONLY dealing with this and not Crohn's for a change. He thinks it's cool that he sees me with a cold like 'normal' people (there's that word again) and not doubled up with Crohn's pain. This is a nice way to look at it I reckon, and it has made me think about how much of a drama queen I possibly could become if left to my own miserable devices.
But right now, as I type this, my fingers dripping with sweat, barely able to lift my useless head, I can't help but resign myself to the knowledge that Crohn's has taken this round.

#NHBPM 20th November

'Write about Regimes, Medicines..'

Throughout the first few months of my life with Crohn's Disease, the doctors and nurses caring for me ran me through a variety if different treatments and drugs to try and get my symptoms under control. Looking back now, I went through a pretty huge amount of trauma at an alarming speed.
Over the course of around 12months, I'd been on a liquid-only diet, I'd had a course of steroids, was on Azathioprine, and a veritable banquet of other drugs; my symptoms never improved. Eventually the only option left was surgery, my Crohn's was so advanced this was done pretty swiftly and thankfully, it's worked. It has taken away the worst affected area and since then I've been feeling so much better.
After my surgery I joined a drug trial my hospital were running. This trial is specifically designed for Crohn's patients having had the same operation as me, to see if their symptoms are eased by the drug post-op, or, if no medication the best way to go. To make sure the trial results are accurate and successful, I won't know if I've been on the drug it a placebo until the trial comes to and end (it's 3years long).
The drug I may or may not be taking is called Mercaptopurine. When I first started the trial I was on quite a high dosage. I was vomiting, constantly nauseous and faint. My dose was reduced until my symptoms were manageable then eventually these symptoms stopped altogether. I've been relatively well since then.
Some of the more pleasant side effects of this drug are, weight loss, hair loss, stunted periods, skin rashes, weakness and nausea. I've suffered, and suffer from the majority of these, but as these can also be attributed to Crohn's, it's impossible to establish what's causing them.
The trial will be finished (for me anyway) in just over a year and I'm a little anxious. What happens if it's the drug keeping me from getting sick? Do u stay on it? What if I've been taking nothing all this time? Do I continue in the same vein and cross my fingers or try something new?
Change can be good as far as medication goes, but where my troubled colon is concerned, lets stick to what we don't know for now anyway..

This post was written as part if WEGO Health #NHBPM - 30 posts in 30 days