New York, New York! What a city! To say I was just a wee bit excited to be headed to NYC was an understatement! I hadn’t been to the USA in over 10 years, and whilst I have been blessed to travel many places since my ostomy surgery, this was my first trip with a stoma to the USA! Would it be any different to travelling elsewhere with an ostomy?
After over 8 months living in London, I finally met my new Consultant Gastroenterologist for the first time just a few weeks ago. I saw an IBD nurse back in March (who was great) but this was the first time meeting the consultant.
This post continues on from my last instalment and the frustrations I was having with the NHS and getting an appointment to see a gastroenterologist in London. Quick recap: 7 weeks + after seeing my GP, I still didn’t have an appointment to see a consultant. It wasn’t that I had an appointment and had to wait for 3 months for it. I didn’t even have an appointment at all. My referral kept getting rejected.
Now I’m not complaining or anything, BUT ……….. thus far my experience of dealing with the NHS has been frustrating to say the least.
Last Saturday night I had the absolute pleasure and privilege of attending my very first Ostomy / IBD event since arriving in the UK! The Purple Wings Charity hosted a Christmas dinner in Bourton on the Water, a fairy-tale little town in the Cotswolds.
Crohn’s and Colitis awareness week 2016 is almost over, so it’s about time I wrote a blog post for it!! There are so many pertinent topics when it comes to inflammatory bowel disease (IBD) … what to write about?! I’ve decided to focus on awareness and understanding.
I often hear people say “we must do more than just raise awareness. There needs to be understanding too”. This got me thinking … Both are important! Awareness is one thing, and must come first. Understanding is taking that awareness to the next level. Read More »
Here are some of the articles I have shared or come across during Crohn’s and Colitis awareness week that are well worth a read, as well as some inspirational awareness raising personal stories and blogs from fellow IBDers and ostomates. Please check them out! Read More »
I have never been an overly clucky person. I didn’t grow up dreaming of being a mum, but I never ruled it out of my life plan either. Now I am in my mid 30s … pushing 40. Is it too late? Now that I have Crohn’s disease and an ostomy, is it even an option?
A toilet. Loo. Lavatory. Commode. W.C. John. Potty. Latrine. Rest room. Wash room. Dunny. Whatever you want to call it, we all use them! But have you ever really thought in detail about a toilet? How you see a toilet and what going to the toilet means to you?
For most of us a toilet is purely a means to an end. A device you sit on to expel your bodily waste. It’s something you use because you have to use it. It’s part of everyday life and I am sure most of you don’t even think twice about it. It’s something you take for granted, and when you sit on it once or twice a day, you do your business and you are done. That’s it!
For some of you, sitting on the loo might even be an enjoyable experience. Reading the paper, playing games on your phone, getting a bit of peace and quiet, some relax time!
I used to view the loo like this too. Until I got Crohn’s disease. Read More »
World IBD Day is this Thursday 19th May. Over 5 million people worldwide including 75,000 Australians (1 in 250) live with Crohn’s Disease and Ulcerative colitis, forms of inflammatory bowel disease (IBD). I am one of those people. You might be one of those people. You might care for one of those people. You may not know it, but you more than likely know one of those people. Or maybe like me before I was diagnosed, you know nothing about IBD at all.
Each of us has a different story. IBD is such an individual disease. It is different when it comes to symptoms, treatment, medication, diet, severity and location of inflammation, surgeries and how it affects us. What works for one person does not necessarily work for the next. There is no one answer; no one size fits all approach; certainly no miracle cure (yet!).
IBD means a lot of different things to different people.
For World IBD Day I’d like to shout loudly about what IBD means to me! In many ways IBD brings about painful emotions and negative connotations. How could it not? Equally important though is the significance it has had on my life, as well as the positive impact to my outlook and even life choices (yes, I did just use the word positive!). Read More »
I am a self-admitted control freak! I have been my whole life! Forever ticking off ‘to do’ lists, preparing for events way ahead of time, planning trips away, living by my diary, super organised with everything. Some would say anal (pun intended)!
How do you be a control freak with IBD?! Answer: You don’t. You can’t.
I take Imuran (Azathioprine) for maintenance of my Crohn’s disease, which amongst other things is known to increase the risk of developing skin cancer. I am always careful to slip, slop, slap when I am out in the sun, however I’ve been advised that whilst I take Imuran, I should have annual skin cancer checks. I went for my first one around 6 weeks ago. Read More »
Can we switch our emotions on and off? Can having a chronic illness lead you to turning off your emotions or at least dulling them down? Or you might experience the opposite and have your emotions run into overdrive?
Being chronically ill can be like riding a roller coaster of emotions – pain, grief, guilt, hope, anger, loneliness, anxiety, frustration. Some liken it to the stages of grief cycle. I am not sure it is necessarily a cycle or follows the same path, but I am sure most of us have been through some of these in relation to our illness.
A few weeks after my first stint in hospital for Crohn’s disease I passed out whilst taking the dog for a walk. Fortunately, I was with my family and could sense something wasn’t right as I puffed my way up a fairly steep hill. My poor little mum somehow managed to catch my fall as I toppled onto the front lawn of a neighbour’s house.
I was only out for about 20 seconds, and after getting home, getting some fluids into me and having a bit of a lie down, I felt okay. I didn’t really think much of it, but the next day decided it was best to see a doctor, just to be safe.
The GP did some blood tests and a few hours later I received an urgent message saying I had to get to the hospital, IMMEDIATELY!
It turned out I’d had a Pulmonary Embolism (PE).
Body image is a controversial topic! For someone with Crohn’s disease (a form of IBD), an Ostomy, AND a history of an eating disorder, this is even more the case!
“An eating disorder?”, I hear some of you say. This is not something I have spoken about in public before, and very few of my close friends even know, but I used to be bulimic.
I have travelled a bumpy road when it comes to body image and food. Having IBD created even more bumps, and really made me reflect on my entire connection with and feelings around food. Read More »
There are many reasons living with a chronic illness like Crohn’s disease is difficult. One of many things I’ve struggled with is having no real explanation for what caused this. No reason why. Why and how did I get Crohn’s disease? When I was first diagnosed I was forever looking for meaning and answers.
The need to have someone or something to blame can be strong and overwhelming. Something has to be responsible, right? Someone has to be held accountable for this crap that I am going through. There must be a reason.
Yes, it might be genetics, environment, lifestyle, or a combination of these things along with something else. It is still unknown and much of the evidence remains anecdotal.
With a chronic illness with no definitive cause, there often are no answers. There are no reasons. Nothing and no one to point fingers at. It just is.
So I, for one, often blamed myself. And the blame spiralled. Read More »
I posted a photo of my naked stoma (sans bag) on Facebook the other day. Someone I know quite well asked me, pointing at the weird little pink think poking out of my belly, “what exactly is that?”.
That’s my stoma, I answered. My small intestine. That’s how I poop.
She apologised for being ignorant, but really it’s not ignorant at all. I wouldn’t have had any idea before Crohn’s disease and knowing that one day I might have to have one what it was either. Read More »
I never thought I would ever walk out of an appointment with my gastroenterologist feeling as happy as I did last week! All went well and as anticipated, and all things going smoothly, I don’t need to go back for another 12 months.
I was actually on quite a high walking home after the appointment. It was like one of those WOW moments I’ve written about before. Was this really happening? It was like a dream. Like I was looking in from the outside. Was that really me he was talking to, telling everything was going well and that I was still in remission? Yes! Yes, it was!!
I have my annual check-up with my gastroenterologist tomorrow. I’m kind of looking forward to seeing him!! This man who played such a big role in my life for so many years, who I was seeing on a monthly basis if not even more regularly at some points. Is it strange that I kind of miss him? Read More »
Pooping has become a pretty normal topic of conversation in my household. Why shouldn’t it be? It’s something we all do. Pooping is something we often take for granted, and we shouldn’t. It’s completely natural and normal, yet people are still embarrassed to talk about it.
It’s part of our daily routine. People ask how was your day / dinner / workout / break / commute /etc? Nobody ever asks how was your poop? Would there be anything wrong in adding “did you have a good bowel movement?” to our daily niceties and vernacular? It doesn’t need to be awkward. These days I often ask Mikey when he gets back from his pretty regular morning or evening bathroom visit whether he had a good poop. These things are important!
Sometimes I wish I’d started this blog 6 years ago when I was first diagnosed with Crohn’s. If I had, it would be a very different blog to the current Stoma-licious. I find it easier writing about the present than in retrospect. What I’m going through and how I’m feeling now. And right now, things are great!
When I was initially told I had Crohn’s disease, the years that followed were filled with a whirlwind of doctors, medications and emotions. I really wish I’d blogged, or at least written a journal on a more regular basis. At the time though, I wasn’t in the right headspace.Read More »
Having IBD at Christmas can be tough. Even tougher than regular times of year. Although there is way more to having IBD and the struggle is much more drawn out than a mere 12 days, in the spirit of Christmas, here is a little ditty about IBD tied in with the 12 Days of Christmas – trying to create a little hope and joy and link in with the Xmas spirit. Read More »
Christmas is well and truly in the air! Shop displays of tinsel and wrapping were out weeks ago, Christmas trees are up and decorated, supermarkets are playing carols and selling mince pies. Is it just me, or does it start earlier every year!?
This will be my 3rd Christmas as an Ostomate. I was hoping to offer some helpful and mind-blowing tips on what it’s like having an ostomy during the festive season, and potential disruptions or things to look out for. Apart from the obvious, I’ve come up a bit blank! The most important thing is to ENJOY Christmas and the festive season whilst taking care of yourself and knowing your limits. Read More »
This week I supported Crohn’s & Colitis Awareness Week (Dec 1-7) by joining in the #7DaysofIBD campaign. I posted a photo a day on Facebook showing the daily realities of life with IBD & an Ostomy.
The campaign slogan “EVERY DAY IS DIFFERENT” could not be any more apt. Whether you’re newly diagnosed, in the middle of a flare, in remission, or post ostomy surgery, IBD is such an individual and unpredictable disease. It truly is different every day. Read More »
I have just spent the last half an hour on the phone arguing with someone at a big insurance company over our car registration and green slip renewal. Infuriated much?! I won’t bore you with details, suffice to say I was getting nowhere by arguing. I could slowly feel my frustration and stress levels rising to boiling point. My whole body was tense, ready to scream ARGHHHHHHHHHHHHHH down the phone. This kind of stress can’t be good for me, right?!
It made me think … how easily we fall back into bad habits. How quickly we forget.
Having a chronic illness has taught me many things. I have reassessed and taken a really good look at myself and the way I live my life. I’ve become very conscious of some of my often unhealthy ways and behaviours, and was adamant I would not let myself revert back to these patterns. Evidently, I have … Read More »
So tomorrow is my birthday. I’m turning 36. Eeeek! That means I am officially closer to 40 than 30. Now that’s a scary thought!
I remember being completely freaked out at the thought of turning 30! Contemplating what I had accomplished to that point. Was I where I should be in life? Where I wanted to be? I didn’t have traditional things like a house or children, but I was happy, and we had big plans!
It doesn’t feel that long ago, my fabulous 30th birthday weekend celebrating with close friends with a winery tour and staying in a beautiful house in the Hunter Valley. Yet so much has happened since then.
So far my 30s have seen some of the best, but also worst, times in my life. Read More »
WARNING! This post will not place in the Top 5 most uplifting posts on Stomalicious. I am usually a pretty positive person, and prefer writing about happy and inspiring things. However, it’s important to be honest and talk about all aspects of IBD, particularly the roller coaster of emotions and different feelings we go through. That is why this post is about fear. Read More »
This week (Sept 28 – Oct 4, 2015) is Invisible Illness Awareness Week. There are so many conditions that are invisible. From lupus to back pain, depression to rheumatoid arthritis, cancer to migraines, diabetes to inflammatory bowel disease (IBD).
This got me to thinking about my illness, Crohn’s disease. Is my illness really that invisible?
Yes, many days, I made myself presentable and went to work like a normal person. People couldn’t see just how sick I really was or what was going on inside my bowels every time I ran to the toilet. Nobody could see inside my anxiety ridden head when I was suffering silently with a mind full of nerves, stressing over my symptoms. These things were mostly invisible. Or were they? Read More »
Up until my Crohn’s diagnosis just after my 30th birthday I was a relatively confident, independent, worldly woman. I was respected at work and was always busy socially. Whilst I never enjoyed being the centre of attention, I could hold my own in a conversation, I was active and adventurous, had a decent career, and a small close knit circle of friends.
Having IBD impacted all of that. As my symptoms worsened, many of the things that had been a breeze for me before, became a struggle. Going to work, socialising, even doing the grocery shopping. With the increasing urgent and frequent need to go to the toilet (and often not making it), came increasing insecurities and uncertainties. Read More »
Yesterday I had one of those WOW, on top of the world, life is beautiful moments that I want to share with you all.
I am not sharing this to gloat or make anyone feel bad. I know everyone, especially anyone with a chronic illness, can have a lot of bad days. I have had a lot of bad days.
I am sharing this because of those bad days. I am sharing this with the desire that it gives hope to others. Whether you have a chronic illness or not… whether that chronic illness is active or not… we all have bad days … BUT we can also all have good days. (Side note: And even on a bad day, you can usually find something good to appreciate!) Read More »
Today’s post is a video blog. I decided it might be interesting to show you how I change my ostomy bag. What better way than through a video? Whilst I could explain the process in words, unless you actually see it, it is probably difficult to get your head around! Read More »
Next week I am off for a follow up appointment with my gynaecologist. I have to admit; I am quite apprehensive (more on that later). However, I thought it was a good opportunity to write my first blog post about SEX!
Before Crohn’s disease, I would say that I had a pretty “normal” and “regular” sex life. Now everyone’s idea of normal is different. For Michael and I, having been together for around 12 years at the time I was diagnosed, let’s just say we weren’t exactly going at it like rabbits every 2 minutes like we were at the beginning of our relationship! Once or twice a week on average seemed to be relatively healthy, and was our “normal”.
Roll on IBD, and that idea of “normal” quickly changed. As anyone with IBD knows and understands, dating and sex can be difficult, on a number of levels, and for many reasons. A lot of the time you simply feel too unwell. The symptoms of IBD take over and limit your sex drive and desires. You have stomach and other aches and pains, diarrhoea, nausea, or are just plain too tired. Read More »
I have been working at my current job for a little over 4 months now. However, it was only a couple of months ago that I told my boss about my IBD and ostomy surgery, and only a few weeks ago that I “came out” to one of the girls in my team. Several of my co-workers still aren’t aware. Why, I hear some of you asking? To be honest, I am not really sure myself.
Both of my previous employers knew I had Crohn’s. The first one I told not long after being diagnosed. I was taking more and more time off for doctor’s appointments and sick days, and as my symptoms worsened, I felt it was important that someone in the office knew, so I told my boss. He was sympathetic and understanding. Read More »
Everyone has their own way of dealing with things and different strategies for managing an uncomfortable situation. This applies to anyone, with or without a medical condition. Whether you have a phobia, get stage fright, or suffer debilitating symptoms from an illness, we all find ways to cope with stress and manage our conditions.
I’ve pooped my pants on more occasions that I would like to remember thanks to my Crohn’s. Of course, it’s horrible and embarrassing when it happens, but I know it wasn’t my fault. It was the disease.
Symptoms are uncontrollable, especially during a bad flare, however in certain situations my symptoms were worse, particularly if I was stressed or anxious. It’s like being the director of your own movie. Once you picture something in your head, it can be difficult to move on from that and remove that thought. The perfect example for me is sitting in a car stuck in a traffic jam with no toilets for miles. I have soiled my pants sitting in the car, even on a 5-minute drive to work. When we had friends to stay at our 1-bathroom apartment with no separate toilet, as soon as I heard them get up to have a shower, my gut would start working overtime. I once pooped into a bucket beside my bed when this happened.
During a flare, as soon as I knew there was no toilet accessible to me, I would start panicking. My heart would beat faster, I would get hot and sweaty, tense up and sometimes even had trouble swallowing and breathing. I believe this is known as the fight-or-flight response. Incredible what stress can do to our bodies and nervous system, and how it can make our symptoms (or our reaction to them) that much worse.
The number 1 way to manage this would be to avoid putting yourself in a situation you feel uncomfortable in. For some, this may be their only option. However, that may not always be possible. You need to get to work, do the shopping, or you might want to push yourself and venture out of your comfort zone just so you can live a normal life and go out and do the things you enjoy. For me, it was important that I do this whenever I felt well enough, and so I was constantly looking for ways to make my life easier and reduce my anxiety when I did decide to extend my boundaries.
There are many different coping mechanisms and distraction techniques, some specific to IBD, and others which may be useful for any stressful situation. Here are a few that I find helpful:
Today’s post is all about World IBD Day, which is today! Held annually on the 19th of May each year, World IBD day is led by organisations around the world, spanning 4 continents, in a unified effort to raise awareness and support for IBD.
Over 5 million people worldwide (including 75,000 Australians) live with Crohn’s disease and Ulcerative Colitis, known as inflammatory bowel diseases (IBD).
There are events happening across the globe, from community walks in Brazil or participating in the half marathon in Brussels, to information campaigns, lectures and presentations all over the world, selfies with toilet paper in Greece, and purple power in the UK, illuminating landmarks and encouraging everyone to wear the colour purple.
Everyone can get involved in the global video campaign encouraging anyone impacted by IBD (patients, carers, doctors, nurses, family and friends) to share their story via a 30 second video under the unifying theme “United we stand”.
I have joined in and here are my efforts!! I can’t wait to watch videos submitted from all over the world on the World IBD Day and Crohn’s and Colitis Australia websites and You Tube channels.
United we stand in our fight against IBD.
SYMPTOMS, DIAGNOSIS + LETTING GO OF DREAMS
I’m not usually one who particularly likes talking about myself or being the centre of attention, but I think it’s important to start this blog with my story. To start from the beginning. I was born in Melbourne in October 1979…… ok well not quite that far back! Fast forward around 30 years. Up until that point I’d had a pretty regular childhood and upbringing. I hadn’t even been in hospital before.
Then not long after my 30th birthday, the first symptoms appeared. I remember clearly the morning after a friend’s wedding in November of 2009, I went to the toilet and noticed blood in the toilet bowl. I didn’t think much of it at first, but it persisted for the next few days, so I thought I’d better go and see my GP. She didn’t seem overly concerned and told me to try taking some inner health plus for a few weeks to see if that helped. Several trips back to the GP and a few months later after a course of antibiotics and some stool samples, and she had referred me on to a specialist. Little did I know at that time what big a role this man would play in the next 4 years of my life!
I was diagnosed pretty quickly after that. After a colonoscopy and banding for suspected haemorrhoids, the symptoms still hadn’t abated, and within a few months I was told that I had Crohn’s disease. I had never heard of Crohn’s before and was really quite ignorant as to what it meant. I didn’t feel that bad, apart from the blood in my poo. Even the fact that it was chronic didn’t really register with me at first. Read More »