Today is World IBD Day…
So, that’s relevant why to this blog? Because in August 2016 I was diagnosed with IBD after living with the disease undiagnosed since October 2015.
IBD is inflammatory bowel disease. It’s as fun and as pretty as it sounds.
IBD is made up of 2 diseases, crohn’s and ulcerative colitis – from my original diagnosis I’ve apparently hit the the lottery and have both…
There is loads of information online about IBD…. (so feel free to have a google…)
But basically crohn’s is chronic inflammation of the digestive track, it can appear in any part of the gastrointestinal tract, but mainly affects the small intestine and/or colon and it can affect all layers of intestinal wall – not just the lining.
Ulcerative Colitis is inflammation that occurs in the lining of the large intestine and/or colon.
It is incurable but can (usually) be managed with medication (& in some cases operations if it’s serious enough) and it comes with a host of symptoms like chronic fatigue, intense abdominal pain, loss of appetite, weight loss, swollen joints, ulcers, eye problems, blood loss, bowel problems, bloating, dehydration and my strange one is aching bones that is the most painful thing ever! Plus many more fun things… Having your gut inflamed can trigger other parts of your body to get inflamed and cause new problems, recently one of my eyeballs decided to be ridiculous and get irritated & inflamed, that was pleasant.
And just a note, the side effects from the intense medication can sometimes be just as bad as the symptoms – so it’s a tough problem to deal with.
So with my diagnosis when biopsies were taken during my first procedure (I talk about that in THIS video) it appeared I had UC but from the tests it showed inflammation that is common with crohn’s – so lucky ol’ me got diagnosed with both for now, but I believe its mainly UC with some similarities to crohn’s.
If you would like to hear more about my IBD journey please check out THIS video HERE. It was honestly one of the most difficult videos I have ever had to film, I am still coming to terms with this disease. It’s ugly, embarrassing and isolating. No one wants to hear about this sort of problem and it’s not a problem that you can easily explain to someone, and it is very complex and hard to get your head around. So go grab a cuppa and sit down because it 25 whole minutes… When I’m nervous about filming I tend to ramble but then I thought maybe my rambling maybe comforting or helpful to someone else struggling with this disease. And if you want to play a drinking game at home, take a shot every time I touch my hair or say “it is what it is”… (you’ll be drunk by the end of the video.)
In the video I do briefly cover my entire story/journey with IBD… But for those who don’t have 25 minutes to spare (don’t feel bad, nor do I!) I was diagnosed in August 2016, which was when I was 20 weeks pregnant with our son. (If you have been around since I was pregnant with “Baby Elf” you will recall I was fairly sick and mentioned I was diagnosed with an auto immune disease, this is it.)
Having IBD and being pregnant is apparently normally fine, because if you are aware of your disease you know how to manage it and what to do, I had no idea I had this problem (I had been sick since October 2015) and it was constantly dismissed by my past GP as being stressed/depressed/high strung… (Stress is a trigger for me to have a flare up, but there was more to it than just stress clearly…) On top of having undiagnosed IBD I also had fairly severe all day morning sickness. Fun times… (Keeping in mind my size, I am super small normally, so I don’t have “weight” to just lose either…) So I struggled through the first half of my pregnancy until my OB put me in hospital for a week and I finally was seen by a gastroenterologist who diagnosed with me IBD… My whole pregnancy was pretty dreadful, the last half of it was a lot of worry, rest and medication. After our son was born the amount of medication I had to take was increased and I started to improve and then the drugs were tapered off a bit during 2017… I’ve been going fairly well with only minimal symptoms (my biggest and most common symptom is fatigue & very painful bones) up until recently where I suddenly have become sicker & it seems I’m getting worse and I have had some worrying symptoms… I see my specialist next week and I assume more thorough testing (scopes) will be planned. (After these scopes I’m truly praying that maybe I’ll be re-diagnosed with just one of the diseases instead of both…) *I would have seen my specialist sooner as I have been quiet sick, but she’s been on holidays – but I’ve been regularly seeing my GP.
So friends, that’s it… IBD.
I will tell you now, this disease is painful in more ways than the obvious. Yes the stomach pain is absolutely horrendous, like you do want to curl up and die – but the pain it has on your self esteem and mental health is horrific. It is very hard to have illness no wants to hear about or you feel nervous mentioning because let’s be honest, no wants to hear about your bowel habits. It is a disease that makes you feel very ugly, disgusting and awful and also makes you feel isolated. Most people who don’t have the disease don’t understand it and trying to explain it is never great. And I’ve even been told “it’s not a proper disease”… So, it sucks – because many people don’t realise how truly awful it can make you feel. And unless it’s spoken about more openly people will continue to not understand.
But it’s also not the end of the world, I’m sick – so what? I get on with my life and I refuse to let this disease own or define me… Yes, I feel exhausted and sore 92.5% of the time but my life can’t stop because I am sick. Sometimes IBD wins and I need to stop, but I try my hardest to keep going. My life doesn’t stop, I have 2 small people to care for – they are my focus and motivation.
If you have recently been diagnosed with IBD, first up I’m sorry – I truly wish it wasn’t this because it truly is shit (Ha, little IBD humour there), but secondly – you are not alone. This disease even though it is not “super trendy” or commonly spoken about is increasingly common (more than 80,000 Australians have this problem) A quick youtube search is going to pull up a whole bunch of funny, witty and honest videos that will make you feel that tiny bit not so alone. And I hope this blog does too. My diagnosis is still fairly new and I’m still getting my head around the whole thing and educating myself on IBD. So while I navigate this new addition to my life and learn to deal with and accept it, I thought I would occasionally share my journey with you all.
If someone you love or know has IBD please be there for them, offer help and take time to briefly educate yourself on what the disease is and no it is not IBS, so don’t confuse the two. Having someone who tries to understand and is supportive in life truly is so wonderful, especially when dealing with a health problem that at times can make you feel like your body is shutting down and it can very be confronting, isolating, humiliating and a bit scary.
*I am not an expert on IBD, I only write from my own my experience and understanding. This is a disease that is unique to every person.
Information and stats sourced from; https://www.crohnsandcolitis.com.au/about-crohns-colitis/