Life as a Crohn-ie

World IBD Day is the 19th of May.

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 knew something 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.

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.