Back in my first blog post I asked my friends and family to describe me, as well as offering up what I also thought of myself. The adjectives were all on the postive side; energetic, fun, adventurous, and enthusiastic being the words to best describe my presence.
I like to think of myself as an energetic person. I always have done. I try to give most things my all. My job, my interactions with my friends… basically anything but housework. I like to bring a bit of sunshine to other people’s lives. I sing. I dance. Sometimes both at the same time, sometimes in public, and no fucks are given.
I can’t help it, my personality makes me do it.
Except for the times when I have no energy. The times when, actually, I can’t help doing anything. Anything at all. Some days I can’t give a single thing to anyone, including myself. Because, well…
Because the only thing tough enough to kick my ass and steal my energy and positivity is me!
My body is literally fighting itself. And it is so frustrating.
All day, every day there is a battle happening inside of my body that I cannot end. And some days it’s just so incredibly tiring that I can’t get off the sofa. Scary thing is… sometimes this can when be I’m healthy. I used to think I was lazy or unmotivated or both at the same time. What negative things to think about yourself, but no matter how much work I have to do, deadlines looming, things I have committed to… Sometimes I just can’t get up and physically do it.
But recently I’ve come to learn that actually, sometimes I just can’t. As much as I want to get up and do the work that needs doing, my body is just too tired.
And the battle is tiresome.
But it’s even more tiresome when you’re ‘sick’.
I’m always ‘the sick one’ in my group of friends/family. It’s a role I fell into very early on and have had to become content with.
Trying to live life when you’re prone to illness is exhausting. It inhibits you and the commitments you make in so many ways. You want to commit to that netball league you said you were so interested in, but in reality, you proably won’t make all of the games because you’ll probably pick up an illness somewhere alongthe way and that usually puts you out of physical activity for two weeks. So, do you do it, or not?
You make plans with friends but have to cancel because even though your sickness symptoms have gone, you can barely walk the dog around the block let alone spend energy on a social outing. Do you go, knowing you’ll be worse off tomorrow, or do you cancel and feel like you’ve let your friends down yet again?
You want to commit to a new role at work but you know that, actually, you’re never going to be 100% so you might miss important meetings and the role deserves 100% effort and energy. Do you throw your name in the hat, or not even bring it up, just incase?
There are so many extra things you take into consideration when you have an autoimmune disease that others don’t have to think about. It’s so frustrating at times, because more than anything, you just want to be well. But you can never garauntee that you will be.
I’m a stickler for Tonsillitis/Strep Throat. For as long as I can remember I’ve always been gifted at contracting it and I’ve always had it pretty bad. Infact, in the past 16 months I’ve had 4 cases of it, and that’s not counting the times I’ve managed to ward it off (praise be!). I battled Chest Infection after Chest Infection after Chest Infection as a teenager. You see, when you have an autoimmune disease your body is fighting itself. It’s working overtime attacking your own body cells because it’s a little bit confused as to what is a virus or bacteria and what isn’t, as perfectly illustrated in the cartoon above. Thank you Beatrice the Biologist! So when you contract a sickness, your body is on the back foot. Instead of being at the start line poised and ready to race, it’s been arguing with it’s coach about something and missed the starting gun. Your immune system is weakend because it’s been beating up on you all day. And then you get sick. And when you’re trying to recover from sickness, you often pick something else up because your immune system is tired from working a double shift.
And sometimes these become the moments when you learn about the wonderful virus’ that are out there in this world, like the aptly colloqiualised name ‘the Devil’s Grip’ which I have recently had the joy of contracting off the back of a bout Strep Throat. Ditch one bacteria, pick up a virus to replace it.
Yep, that’s right folks, there’s a virus out there called the Devil’s Grip. I am offically more metal than you’ll ever be. An inflammation in the lining between the ribs, random attacks of sharp pain occur often making it hard to breath. Attacks come and go and don’t cause any harm, but as it’s name suggests, when it’s happening, it’s incredibly unpleasant. It really is like someone is gripping your insides, or giving you a quick stab inbetween the ribs with a pair or scissors at random. It’s also slightly awkward when you’re having a conversation with someone and randomly lurch forward and shout “ooooh!”. It certainly disrupts the flow of things.
Although rare, it’s not uncommon. I’m glad the GP had the knowledge of the disease, and that my organs are healthy (I thought my kidney was going to implode on me), but this illness is just another in a long line that makes life difficult to do at times.
Talk about your body kicking you when you are down. Or stabbing you, rather.
What is the most frustrating thing about being sick all the time is that it can come completely out of the blue. One day, you’re feeling fit, healthy and full of energy, you’ve been aceing life, you’ve made plans for the weekend and then the next day you wake up and BOOM. Your body laughs at you and then you’re out for the count, in bed for three days and still recovering over the next three weeks. It’s just so bloody exhuasting. And that’s how I’ve had to become content with taking it easy at times, even when you don’t want to. Even when there’s a pile of work (house or otherwise) looming. Because those of us with autoimmune disease know, if we rush back into things, into being energetic, something else will come along and potentially slap us in the face.
So for those of you healthy people out there, what can you do to help?
Well, the fact of the matter is, because our immune system is so shit, chances are you probably won’t pick up whatever illness we’ve got hanging about. I estimate that over seven years and the many, many times I was sick, my partner only fell sick twice that I can remember… And it was the flu or common cold, which I don’t usually get (I’ve got immunity to something, yay!). Sometimes I just want some company. I can’t go out, but perhaps you could come and spend some time with me while I do ‘nothing’ (craft)? Understand that we commit to things with the best of intentions but when it comes down to the day, if we cancel, it’s because we’re listening to our bodies. Support us, don’t secretly get mad with us. Trust me, we’re already mad and frustrated at ourselves. The frustration of not being able to do so many things is one of the biggest things about being prone to sickness all the time. We’re already being incredibly hard on ourselves about it. We need your support, not yout pity. Share with us. In my experience, when you’re stuck at home sometimes all you want is to hear a good story from someone else’s day. I can run on the fumes of someone else’s positivity and every little interaction helps. Tell us some good things while we sit in a cesspool of our own sorrow, it’ll do us a world of good.
So with all of that being said, I must ask an important question…
Do you think this means I warrant enough excuses to hire a cleaner? Because I could sure live without the negativty of housework in my life.
Ever wondered what having a Colonoscopy is like?
Of course you haven’t! The only thoughts you’ve probably had about the procedure is that it’s quite degrading and you hope you never have to have one.
Well luckily for you, reader, it’s that time again; time for my bi-annual colonoscopy! Woohoo!!
So, friends, come with me on a journey through time and space, to the wonderful world of the Colonoscopy. (Because yes, sometimes the drugs can be that amazing.)
Following on from my post about Crohn’s Disease, here’s the craic. (Pun intended.)
I’m 28 years old and I’m going in for my fourth colonoscopy in nine years. I’d like to think that with three under my belt already, that I’m an old hat at this. I’m experienced. I’m travelling a road I have already travelled (and will travel many, many more times). In fact, after I got over the shock of the first one and was told I would need one every five years to monitor my condition I began to feel a slight affection towards the procedure. Well, five years decreased to two and here I am, about to go through it all over again.
I am a huge advocate for bowel health and talking about all it encompasses. It is so important we are having these discussions with our friends, family and children so they understand it is absolutely fine and normal to be speaking about your bowel and it’s movements. Let’s remove the stigma, one conversation at a time… because we have a first world problem with numbers even higher here in little ol’ NZ, and the rates of IBD and Colon Cancer are only going to soar over the next few decades. So to that end, maybe you or someone else you know will be having a Colonoscopy in the future. Guide them towards this post, ’cause here’s the low-down on the entire process.
Ask anyone who has ever had a Colonoscopy before and they’ll all tell you the saaaaaaame thing; the procedure it’s self is ‘fine,’ it’s the prep that’s the horror show. Well, here’s why.
Four days out; read the instructions. Seems simple enough. To summarise the main points; Over the next three days one must eat a low fibre diet. You’re going to be drinking a looooooot of laxatives, so keep up your fluids! You cannot eat a lot of foods.
Here’s a paraphrased list of what you can eat…
White bread, white rice, white flour, processed cereals – rice bubbles, cornflakes etc
Fish, tofu, eggs (Chicken, Turkey and Ham for the omnivores)
All fats – butter, mayonnaise, sugar, honey, syrups, boiled lollies, ice cream topppings, spreads without seeds, gravy, dried herbs, spices
Soups with allowed ingredients
Water, tea, coffee with no milk, light coloured fizzy drinks
That’s a lot of white processed goods, and a lot of sugar… sooo…. almost the exact opposite of my current diet.
And what you can’t eat…
Wholemeal/whole grain bread, wholegrain breakfast cereals, brown rice
All seeds and nuts – chia, pumpkin, sunflower, sesame, poppy, pine, peanut, cashew, brazil, walnuts, almonds etc etc etc
Any other vegetable not on the allowed list (so, almost all of them!)
Any fruit with seeds or pips and any fruit not on the allowed list (again… most of them)
Legumes – beans, lentils, soy products
Anything with a rough skin, dried fruits, coconut
Everything from my normal day-to-day diet. I already feel hungry.
Three days out; begin your low fibre diet.
Well, having been to the shop I stocked up on white carbs and eggs, I should be fine, right? Wrong.
The change in diet has significantly increased the amount of wind I am producing, and therefore the amount of pain I can feel in my gut. It’s sore in so many different places I’m not sure which spot to focus on. My body is burning through these white carbs quicker than I can keep up and I am incredibly hungry every two hours. Even my usual boiled eggs for breakfast which usually tides me over, hasn’t. I’m already thinking about dinner as I’m halfway through my lunch. Two days of prep to go…
Two days out; Continue low fibre diet. Drink plenty of fluids.
Orange juice counts, right?? I hope so. I’m sick of white bread. Two days ago it felt so illicit… white toast bread, a smattering of butter and peanut butter or vegemite… oh, delicious, naughty and not overly nutritious but oh, how tasty!
The thought of it now, no thank you. There’s still wind trapped in odd places in my bowel and I comically had to increase my pace at the end of my evening dog walk to ensure I got to the porcelain throne in time… isn’t this the opposite effect they’re going for?
I think what is important to remember is that the foods I normally eat are based on years of trials and experience; I know what my body likes and can handle and what it can’t. What it can’t handle it tells me about, very quickly. Hence the need to sometimes sprint for the closest facilities. The fact that some areas of my bowel (particularly around my terminal ilium, where my Crohn’s begins) are sore and haven’t been for years, is a little disconcerting. My diet is my diet for a reason. Surely this increase in pain will have bearing on the results of my scope? I guess we’ll find out. There’s one thing that has really irked me this prep; I am on this diet involuntary and it is only for a short amount of time. A low fibre diet… some people eat this every day, perhaps for a variety of reasons; poverty, lack of education, limited palate, health problems, lack of funds etc. I feel miserable after two days. I feel like I’m lacking in real nutrition and the significant increase in my discomfort is quite alarming. It’s the people living in poverty eating like this that isn’t sitting well with me. How people live feeling like this every single day, I don’t know. Well, actually, I do have an idea as I went un-diagnosed for 8 years and never want to go back to feeling like that. It’s not normal, people!
One day out; It’s time for action!
To be honest, this day is almost bigger than procedure day. It’s *laxative day!
Breakfast is allowed, but no food is to be consumed after 12 noon. A daunting prospect when your admission is after noon the next day… and all you’re allowed between now and then is three litres of laxatives and 10 glasses of ‘fluids’.
There’s some odd people in this world who legitimately fast as a dieting technique. This is a bizzare concept to me as my life whole-heartedly revolves around food. Hanger is real and you don’t want to be between my hanger and a plate of eggs.
Full disclosure… I finished eating at 12.30. Call me a rebel. I like to live on the wild side.
*Laxative day is the affectionate name I have given this day. This is not a proper medical term. In fact… There may not be many people who call it this so fondly, and with an exclamation mark.
Obviously in order for your bowel to be visible via the scope it needs to be completely empty. That’s where the Glycoprep comes in. I find the best way (or the only way) to describe it is like drinking a glass of thick, salty lemon water. Really thick, really salty, kinda lemony tasting water. The first glass generally goes down ok… it tricks you. You think “Oh, it’s not that bad!” However, it’s after that when there’s another 6 glasses to go (for the day) that can defeat you.
For me, there is only one way to mentally prepare oneself to get through drinking all these laxatives and not to give up. That way is drawing on my competitiveness. I will not let this disgusting glass of thick salty lemons beat me. I’ve always enjoyed a countdown. Going for a run, for example, I would always count… 1 km in, 2km in, 3 to go… 2 to go… 1 to go… And that’s exactly how I drink my Glycoprep. One glass down, seven to go. So, with that being said I decided to do a little video blog for you-all. There’s only so much one can write to explain what this stuff is really like. But a picture (or a video of someone with an expressive face) is worth a thousand words. Bear with me on these videos; I am much more comfortable writing words than I am speaking them, often my brain words no work when speaking.
I found this time around that keeping myself occupied worked a treat in forgetting about how horrible the prep is or counting down in loathing to the next mouthful. In fact, I’d go as far to say it made a significant difference. Instead of being solely focused on the prep which I have been every other time, it was like it was a side stall I had to pop over to just to say hello every now and then to keep the vendor happy. Thankfully I have a hobby that keeps the hands and the brain occupied an requires a bit of a break every now and then, perfect for having a mouthful or two of salty lemon goodness.
As a side note, this hand-made crocheted baby blanket is now available to purchase if anyone is interested. Am I pushing my luck here?
So, I got through the last glass of the day with an hour to spare. The thing about drinking two litres of laxatives is that you forget to drink other fluids… so my 10 glasses of clear fluids is more like 5… plus 7 glasses of prep. We will see the affect of this tomorrow I suppose. The prep takes between 2-3 hours to take affect. After about 4 hours of drinking it my stomach was completely bloated and when I’m bloated, my stomach is completely comical in a “how did your body get so distorted? Surely that’s something that only happens in cartoons?” kinda way. This bloating makes finishing the rest of the prep a little tricky. Luckily, the “evacuation” begins and helps out at this point. Lose a little… drink a little.
Have you ever had violent diarrhea? Yes? Lucky you, you survived to tell the tale! Two hundred years ago you probably wouldn’t have. Gosh science, society and healthcare has come a long way! No? You’re lieing. Everyone has.
Evacuation is a little different to your run of the mill diarrhea. Keeping in mind that you’ve not eaten much and all you’ve had in the mean time is liquid, whatever is coming out… It’s pretty much liquid to begin with. In the beginning it’s your run of the mill brown colour. But a liquid brown and any leftover fibrous matter comes with it. And the more frequently you go, the lighter it becomes. If someone was to over hear you they could liken the sound to someone squeezing a water bottle into a puddle… the steady stream of water into water. There’s not much to be said about the evacuation side of things. Except that it happens. And when it happens, it happens quickly. So don’t move too far from the toilet. And always keep the seat up…
The instructions the hospital provide kindly direct you to, if you so wish, to lubricate your anus with some Vaseline before you start pooping to lessen the effects of constant wiping. Well, the only lubricants I own other than cooking oils are Vicks Vapour Rub and Deep Heat and I’ll be loathed to rub those on my anus at any point in my life. That would add a whole other element to the experience. So sans Vaseline, I found a good ol’ pat, instead of a wipe worked a treat. I mean… there’s nothing to wipe up/or away anyway, other than maybe a few stray back-splashes. I didn’t even use an entire roll of TP – win! But looking after your anus is very important, especially because tomorrow, someone will be using it as an entry point to your bowel! Hurrah!
The day of the procedure; Even more action!
I was up early to drink the last litre of Glycoprep. I was supposed to finish at 8, however I finished just before 9… I got side tracked reading. That, and the cat was sat on my stomach which made things reeeeeally interesting! I managed to get myself on a good angle to prevent any accidents from happening, but throughout the day my anus just felt like it was leaking constantly, when really it wasn’t. I got to the hospital and after a short wait, was taken to my cubicle.
That old hat I spoke about earlier… well, at this point I was wearing it. They didn’t even need to ask me my date of birth, I told them all the details they needed to know almost before they asked them.
“Have you done this before?”
“Yeah, this is number 4.”
I mean, I’m young, and I know I look young. But surely I can’t be the only young female in the Wairarapa who has this condition and is in biannually to get checked up? Perhaps they’re surprised I’ve been in so many times already? Or that because I’ve been in so often I must have been diagnosed young? Or maybe it was because I was so chirpy about the whole thing? Regardless of their thoughts, with my admission they received a work story out of the ordinary to go home and tell to their partners at the end of the day.
The best part about having a procedure at the hospital is the heated blankets. It’s bliss. And they pile them on. But once they put the heated blankets on you, they check that your IV line is clear by injecting water into it. I always hate this part. It’s cold. It’s cold inside one of your veins where it should be warm. And I always tend to over react; so much so that this time the Anesthetist, concerned, asked if it hurt? No, sorry lady, it doesn’t. I’m just not hiding my personality from you. At that point the Gastroenterologist came in and positioned myself and the bed so he could scope me out. (Haha, get it?!)
“Check it out!” I said as I flashed him my ass. (Classy, Sarah, he was gonna see it anyway.)
“What is that from?!” he asked about the large dark brown bruise that took up a large proportion of my right ass cheek.
“I fell snowboarding last weekend” I replied.
“What a fall!” Yes pal, yes it was. That’s why the big dark bruise was still there 7 days later. He then proceeded to speak with his nurse about the pitfalls of snow sports and the terrible injuries one could sustain… broken wrists, collar bones etc etc. At this point I turned back to the Anesthetist and asked her, very nicely;
“When you drug me up, can I sing to you instead of counting backwards from 10?”
“Oh, we’re not putting you to sleep, it’s just sedation.”
“I don’t want to be awake for this. I was asleep the last two times…”
“It affects people differently. If you were asleep the last two times you’ll probably fall asleep this time.”
Can you tell I’m still relatively sedated here?
As it turns out, gaining around 5kgs can be the difference between being asleep and awake during a procedure such as this. As she started to inject me I waited…. and BAM!
“Wooooooooo, there it is!” And I’m off, flying as high as a kite in the sky.
Which is when I broke out in to ‘Food, Glorious Food’ from the musical Oliver, hoping I would fall asleep before the end of the first verse.
I didn’t fall asleep.
So I sang the whole thing. Or at least, I think I sang the whole thing. I was concentrating so hard on getting the timing right in the faster bits of the song I hadn’t even realised that the scope was already almost at the end of my entire large colon. When did he stick that in there? I don’t remember it going in. I then proceeded to ask the specialist if he would like to sing me a show tune in return? One of his nurses suggested something from Annie. In my head I sang ‘Tomorrow’ but cannot confirm if any words escaped my mouth. So, heads up folks, if you don’t want to look at your own insides, you’re best to try and sleep through this part.
It had been 9 years since I’d seen mine and the difference is astronomical. I am so much healthier than I was when I was 19. So when he tried to tell me some parts were showing a flare up, I argued with him. Very terribly, of course, because I was high on drugs. And he is a trained professional. I stopped making sense and started closing my eyes as they took biopsies in order not to feel the tug on the inside of my body. There’s something to be said about that… Feeling a pull on your insides and then seeing a small silver device pull a piece of your bowel lining off as easily as it is to pick a skin a blanched tomato. I also chimed in as to when he should take pictures.
“Oh, that looks good, get one of that!”
I was in theatre for about an hour and was under for a total of about 45 minutes. It felt like 5 minutes. I wasn’t joking when I said it was a journey through time and space. I mean… you’re on drugs, you’re looking at a screen of the inside of your large intestine and time is speeding before you without your knowledge, but it feels like it’s going ultra slow.
I aced recovery because I was already awake, and after a little snuggle up and rest in the warm blankets I was well enough to inhale the sandwiches that had been left for me. And then I snuck in the Cookie Time biscuit I had packed in my bag. And a massive Milo. I think I could have eaten another two sandwiches at least. This metabolism is waiting for nothing. After a little bit it was time to remove my IV line, get changed and go home to sleep and bleed out the anus for a little bit.
And that, my friends, is my most recent experience of the joys of a Colonoscopy.
Things I learned this time around:
I won’t be eating white bread for a long time
I enjoy fibre and struggle to live without nuts and seeds (although I did enjoy the custard and banana that I don’t usually afford myself)
I need to drink more water – finding a vein was difficult
Keep yourself occupied during prep and you’ll barely notice how terrible it is… Well, you won’t dwell on it, at least
Show tunes are a great way to cheer anyone up, in a range of situations
The doubled edged sword to being awake during the procedure is that you’re inclined to watch what they’re doing to your insides, and falling asleep increases your recovery time, but you don’t get to watch them decimate your bowel!
My Kiwi accent is different to other Kiwi’s and I can’t figure out why. There’s a hint of Naki in there, but, what else?
I was the only happy sounding patient in the ward; it must be that this procedure gets easier each time you do it, or that there’s something to be said about being extremely relaxed about the whole thing
I’m far, far past any embarrassment about having someone look inside my ass to check to see if I’m healthy (or not)
All in all, out of all the procedures you could have, whilst this one seems to be the least dignified, personally, I think it really only is if you let it. ‘Cause trust me, old mate behind you moving the scope through your intestines has seen thousands of assholes before yours and will see thousands after. It is what you make of it and fourth time around, I made it incredibly fun… If not for my own entertainment, then for the medical professionals who so kindly cared for me this time around. The prep is the worst part, the actual procedure itself being very quick, relatively pain free and all you’re left with at the end is a plaster over your IV line, a massive bruise two days later and wrist tag with your name and date of birth.
A massive shoutout to C, D & E who dropped me off and collected me from the hospital. Sometimes it’s hard being a single spinster when the cat doesn’t know how to drive a car. Thank you very much. I couldn’t have got through the day without you. I greatly appreciate it.
I truly hope this has given you an insight into the process of a Colonoscopy. I know I may be a little light on the details of the actual in-theater procedure, but it’s so hard to remember everything when you’re floating above your own body.
So now I put this to you; Have you had a Colonoscopy? Was your experience(s) similar? Or shockingly different?
And to anyone with any questions…
Anyone who may be going through this procedure in the near or distant future with questions or worries, anyone with fears or reservations… I hope this has relayed some of those reservations. And as for the questions… Ask! I’ll put that old hat back on and answer anything you’d like to know.
And if you’ve got to this point and you didn’t laugh or smile at the word anus… look at you, you’re so mature!
Inflammatory Bowel Disease is an autoimmune disease that affects mainly the intestines/bowels, but can affect the entire digestive system.
It is the umbrella term for those diagnosed with Crohn’s Disease (CD), Ulcerative Colitis (UC) or Indeterminate Colitis (ID). Each diagnosis can present in different parts of the bowel/digestive track and can be absolutely debilitating for the person with the disease. Not only this, people with IBD are also four times more likely to develop bowel cancer than those without it and have a higher chance of developing osteoporosis, skin conditions, joint pain, eye inflammation and liver disorders. Now, that is a daunting list for anyone to face when you’ve just been given the news that you have a ‘disease’ with no known cure. But IBD appears to strike mostly young people aged 15 – 40 years old. Young people who, after diagnosis, now have a life ahead of all sorts of possible complications. Imagine finding that out during the prime of your life.
In New Zealand around 15,000 people have been diagnosed with IBD. This number was established in 2010. The number of people diagnosed since then would have increased and there are probably more people who are ill, but for a range of reasons, have and may continue to go diagnosed. So chances are, you know someone who’s got it.
I have Crohn’s Disease.
I don’t hide it, I’m not shy of talking about it and after I was diagnosed I took great delight in showing everyone my colonoscopy pictures. (“Do you want to see my insides?!”) BAM. Picture in your face before you had time to reply much to my delight and my peers intrigue and slight disgust.
But this wasn’t always the case.
I was diagnosed at 19. I was living with 4 boys and sharing a bathroom, well, it was an issue. I knewsomething wasn’t right with my body, so off I went to get myself some iron injections. 5 injections, 25mg of liquid iron was injected into my body and my iron count went up by only two points. My GP was concerned and tried to probe a little deeper. Dreading having to tell someone about my toileting issues and the fact that I was in pain for a large percentage of the day, it made the whole situation worse. I was full of angst. But my GP made me feel so incredibly comfortable I told her everything. I told her the truth.
I told her the secret that I had been keeping for almost 8 years.
That when I was 11 years old I started have symptoms, my bowels were bleeding, I had constant diarrhoea and I couldn’t remember the last time I had a firm/normal bowel movement – it had to have been over 9 years. I couldn’t even remember what it felt like. But I was SO embarrassed about it that I couldn’t tell anyone. Somehow I just put up with it. And my teenage years… well, they were miserable.
When I think back to my teenaged years I was so lethargic and unwell. During the school holidays I would sleep 10 – 13 hours a day and would wake feeling unrested. And during term time… well… I’m amazed I got through it. My Mother always said
“You burnt yourself out in Primary School!”
Well, if I burnt myself out in Primary School, during High School I must have put the ashes in an incinerator and cranked it up on high. As well as having bowel problems I was sick all the time. Chest infections, colds, rashes… It felt like it was never ending. The mornings were always the worst, the hardest. My bowel obviously having had a rest, was ready to dispel everything as quickly as possible. I had terrible cramps and some mornings could barely get off the toilet, and if I somehow managed that the only other thing I could do was lie in bed in the foetal position until I fell asleep and/or the pain receded. This un-diagnosed condition dictated everything I did. Did I go out and visit friends? Did I stay in? Could I stay the night, or go home really late, or perhaps go home really early in the morning? Would there be a toilet close by? Would the toilet be too close to an area where people were which meant I could potentially be heard? What about a toilet in the bathroom, so I could feign a shower if it was decidedly bad? What about the smell… would anyone potentially get a whiff of the smell of my insides dying? That’s what it felt like. These questions and many, many more occupied my thoughts for a large percentage of the day. I had to be close to a toilet at all times. I preferred if it was secluded and I had a preferred time to go normally dictated by my body. If possible, I would go at a time when the volume of traffic passing by was slow and there was low to no chance of anyone catching me coming out of a cubicle or bathroom with the look of pain and shame on my face. It was just a horrible way to live, it consumed me.
I know what you’re thinking. Why didn’t I tell anyone? Someone?
The real answer is I just don’t know. I don’t know why I didn’t say something. I was so incredibly embarrassed by the entire situation. I could have been healthier much, much earlier if I’d said something, but I didn’t. My family GP referred me to a specialist Paediatrician when I was 14. My Mum and I took the trip down to Palmerston North and the Dr asked me about my bowel movements. I seized up. I started to sweat. I just couldn’t say the words purely because I was so, so embarrassed about what was coming out of my body. So I lied.
I regret this now. Had I known I had 5 more years of pain to go through I would have done things differently. But that’s the thing about hindsight. It’s usually too late.
So I continued to put on a facade and live with the pain. And you know, on a bad day having to put a facade on just took up what energy I had left. I was physically and emotionally drained all the time.
Then I went to University and had to live in the halls. Luckily, I was given a room with an ensuite, so I could continue my facade for another year. But then I moved in with the boys and, well, then there was a real problem. So after 8 years I finally told a medical professional the truth, and I felt a weight lift. The burden was no longer mine, I was going to find out how to get healthy again and I instantly felt better.
So at 19 years old I finally had a diagnosis. I had IBD and luckily for me, the Gastroenterologist said, I had Ulcerative Colitis, the ‘better’ of the IBD diseases. Better? How?
‘Well, if your condition gets really bad we can take your large bowel out and you will be better.’
Oh, well that sounds delightful, I thought. If it was that easy, take the bloody thing out now, get me off your books and you can go about fixing other people too! I had ulcers in my large bowel which were making me ill, but with some steroids and Mesalazine (the most common prescribed medication for those with IBD) I would get back to being healthy in no time. Well, no time was actually 12 weeks. And some steroids and Mesalazine turned out to be 12 pills a day in the beginning. I remember being in shock thinking… ‘Really…. 12 a day?!’ But also, ‘Thank goodness it’s not cancer!’
I was weaned off the steroids and settled on 6 pills a day.
For the rest of my life.
And it was a hard pill to swallow – figuratively and literally.
The thing about Mesalazine is that it’s really a bunch of granules in tablet form. As soon as it touches water it dissolves. The granules separate from each other and you are left with granules sitting on the back of your tongue and all through your teeth, even when you manage to swallow most of them.
Every day. Twice a day. For the rest of your life.
Well, respite came in the form of a new Gastroenterologist who took my dose back to 4 tablets a day, and upon my confession that I find it difficult to take the pills so often tend not to, was told I could take all four at once. Hurrah! However this reduction of medication also came with a bit of a shock; a change of diagnosis. Another colonoscopy revealed my ulcers and the inflammation of my bowel had gone down. My condition was still currently confined to my large bowel, but under the microscope my biopsy samples showed that my condition wasn’t Ulcerative Colitis but in fact, Crohn’s Disease. So, if my condition ever gets worse, well, the above mentioned surgery is not an easy fix anymore, and could in fact encourage the condition to spread to my small intestine where a whole raft of problems could begin.
Now, this is not a woe is me post. Since being diagnosed I have lived a relatively healthy lifestyle. I still continue to take my medication sporadically, but I have managed my Crohn’s through my lifestyle. My biggest sacrifice to date has been meat. I would love nothing more than a helping of roast lamb, a surf and turf or all the bacon in the world. It took me 6 years, but I realised that my body didn’t like it. I would double over in pain every time I ate meat. So I phased it out. I try not to consume too many foods that are high in saturated fats, eat my veges and stay away from anything fizzy. I don’t eat fruits with a high pectin content and I shouldn’t eat fruit with small abrasive seeds, to name a few things I stay away from. Or at least I try to. At the moment this is how I manage my condition. I take my Mesalazine sporadically, but I try to be as stress-free and eat as clean as possible and for this, I have been pretty healthy since my diagnosis 8 and a half years ago.
But IBD is different for everyone it affects. What I find I can eat, others can’t. Whilst I work on remembering to take my medication, others would give anything to just be on four tablets a day. The reality is, for so many IBD sufferers daily life can be a struggle. Other than routine colonoscopies, I have been lucky enough to never have been hospitalised with my condition. For some sufferers of IBD, this is a yearly and sometimes even monthly reality. Some sufferers cannot work because they are just so sick, all the time. And if it’s anything like what I went through as a teenager or worse, well, I’m not surprised. I still have both my large and small bowel. Many sufferers have had surgery to remove parts of their bowel, leaving them with a stoma bag. Because often, that is the only resolution. There is still no cure for IBD. These are the realities facing sufferers of IBD.
We don’t know what causes it. We don’t know how to cure it. There are so many things we don’t know about it. But we do know it sucks the quality of life out of it’s sufferers. We know it turns the strong weak. And with more than 15,000 sufferers in New Zealand, you probably know someone with the condition or someone who will be affected by it somehow – your brother, sister, husband, wife, partner, cousin, aunt, uncle, mother, father… IBD doesn’t discriminate.
So how can you help?
There are plenty of ways. The first thing you can do if you know someone with IBD is to be supportive and understanding. We didn’t ask for this condition and everything that goes with it, so when we’re not feeling 100% the thought of going out to a cafe or restaurant where we A.) can’t control the food and B.) are unsure of the toilet situation, well, let’s be honest, it can really give us the shits – literally. Stress is a contributing factor with the disease and sometimes we need things to be as stress free as possible.
Ask us how we are feeling; if we look terrible, we are probably feeling terrible and sometimes a little understanding and sympathy can go a long way. Be mindful of making comments such as “Oh, I heard you can fix that by going to Naturopath, eating a gluten free, dairy free, egg free, meat free, grain free diet and rubbing oil on your stomach outside under a full moon!” (Full disclosure, not a direct quote from anyone I have ever encountered, but that’s what it feels like you’re saying.) Because we’ll probably think something along the lines of “Oh, did you now? And here I am, with modern medicine, still with Crohn’s disease, silly me, it was that easy all along!”
In public; be aware, and be understanding. Not all disabilities are visible. I don’t do it all the time but if necessary, I’ll use a disabled toilet. Yes, they are for the handi-capable. But when your disability is your bowel, surely you’re entitled to use that disabled toilet too. The disgusting looks don’t make us feel any better, and we’d probably rather be curled up in bed, dosed up on painkillers in the foetal position than use the disabled toilet. But needs must. And our needs… well, sometimes we can hold it in and sometimes we have 30 seconds to reach a toilet before all chaos breaks loose.
Donate. Crohns and Colitis NZ are the NZ charity established to support those living with IBD. They receive no government funding, yet the work they do is so important. As I mentioned earlier, many young people and teenagers are diagnosed with this condition. Had CCNZ been around when I was younger I may have felt confident enough to tell someone my problem much earlier than I did.
Help out with the toilet map!
This toilet map let’s people with IBD know where the nearest accessible toilet is. If you know of any in your area that are not on the map, email in and let them know! This is not just a brilliant resource for people with Crohn’s and Colitis. How many times have you been caught up short? Once again, this is merely one of the services CCNZ provide. They really do deserve a pat on the back.
Get yourself checked! If you have any inkling you may have a problem with your bowel – get it checked. Feeling bloated, having pains, constant diarrhoea isn’t normal! Watch what you eat and which foods seem to cause you problems. Notice patterns and see your GP as soon as possible. Look after yourself!
Spread the word!
I have a lot of feelings in my gut [pun intended], but there’s this one I just can’t shake which is telling me that the number of New Zealander’s diagnosed with IBD is going to sky rocket over the next 10 years. Talk about IBD, talk about poop, talk about gut health, talk about the importance of living a low stress lifestyle to care for your body. Normalise it! I don’t do it intentionally but I know I hold all my stress in my stomach. I can feel it. Your bowel is often described as being the second brain of your body. It can dictate so much of your life as it does with IBD sufferers. Perhaps knowledge and awareness is our best prevention for the future.
So this is my story of life with Crohn’s Disease so far. I’m not an expert. I’m not a researcher. But I am a sufferer. It’s not the detailed story, just the important parts. Except the part about my first farts in 9 years smelling like lemons; I did miss that part out. Anyone who’s had a colonoscopy (or three, or four…) can tell you about Glycoprep, mmmmm salty lemons!
It’s a cause that’s so important to me, because unlike other sufferers, I really have got it pretty good. But that may not always be the case. One day you’re fine, the next you’re not.
So if you know someone with IBD, wish them a happy World IBD day. Congratulate them on being healthy, because it isn’t always the case. It is such an invisible disease that it often gets swept under the rug and is not talked about. Yes, bowels and poop and blood can be yucky. But maybe the concept of it will be a little less yuck if we speak about it openly a bit more.
However, farts are always hilarious. So, if you know they have a sense of humour like me, make a fart joke or two. They’ll appreciate it.