So you have just been diagnosed with Ulcerative Colitis… Now what? Well you are probably a bit shell shocked and confused as to what the hell this disease is. You are frantically googling and recoiling in horror at the words ‘increased risk of cancer’ and your mind is boggling with all the different treatment options. I know this feeling, as this was me over ten years ago.
I had been losing a lot of blood and had bouts of diarrhoea but as my daughter was only 9 months old I thought it was probably piles. But it got worse and worse till I was losing so much blood, the toilet bowl looked like a massacre had taken place. I ended up passing out, I was so anaemic and dehydrated from the bleeding and diarrhoea and then taken by ambulance to the hospital, after a lot of tests I was eventually diagnosed with Ulcerative Colitis.
I was given a prescription and sent on my (not so) merry way feeling completely adrift and unsure as to what I was facing. Initially I was happy as I thought it was going to be a diagnosis of cancer, but suddenly I had to learn about this disease that has no cure and that would affect me forever. I was devastated.
Over the next few years, I slowly learnt more and more about the different drugs, the side effects, the flare ups and remission periods. I eventually discovered the support of IBD nurses and learnt that I had to take control of my illness, I had to learn how to adapt my meds according to how I felt. It was a very difficult task, before this point if I had ever been ill, I would go to the GP, get a diagnosis, a prescription, take the pills for a set time and then get better. Suddenly I was told to self manage my illness, to know to up the dose of some drugs at certain times, to know when to call for help and when I should just deal with it. It was a frightening and confusing time.
The biggest change for me was discovering that the hospital had an IBD nurse. This took a few years as I discovered three years in that I wasn’t even under the care of the gastro team at the hospital! (But that is a WHOLE other story). As a sufferer of IBD (either Crohns Disease or Ulcerative Colitis) in the UK you should have access to a specialised IBD nurse. This is someone who you can see regularly, have phone contact with and who is there to support you through your illness. The team at my hospital became a lifeline, a friendly voice on the end of the line when I was confused and needed support or advice. I am amazed at how many people I speak to that do not know they can see a specialised nurse!
I know you are facing this terrifying time, but you have to take control. You have to educate yourself, find out as much as you can and be your own advocate so you can ensure you are getting the best treatment. It is easy for patients to get lost in the system, the NHS is amazing, but it has it’s issues due to the pressures put onto it and so you must make sure you are playing your part and not being a bystander in your own health.
All the different medication options are mind boggling, it is so confusing to know what is the best course of action. Take advice from your doctors, registrars and consultants, listen to your IBD nurse, but do your own research too. Do not be afraid to ask questions, it is OK to be unsure and to remind medical staff that they may deal with this every day, but for you it is new and overwhelming.
If you are unhappy with your care, you can ask for a second opinion. Simply go to your GP and talk through your options, after ten years under one hospital and feeling many times that I was unhappy with my care, I decided to move hospitals. It was the best decision I made and under the new teams at a different hospital I am so happy. I feel supported, informed and cared for.
When I was first diagnosed, I had never heard of the disease let alone know anyone who had it, there was little online and I felt so isolated and alone. I was embarrassed to talk to my friends and family about it as I didn’t feel comfortable telling them about my bum, blood and shit! (Oh, how times have changed, eh?!)
At times of flare ups I would lock myself away, not go out or visit friends. On one occasion when I ventured out to a friends house during a flare, I stood up from her dining table after having a coffee to see that I had bled so much that it had gone through my clothes and onto her furniture. I was absolutely mortified. How could I tell her that blood from my arse had leaked onto her (thankfully plastic) chairs? Instead I covered it with my bag, grabbed some cleaning wipes from her kitchen side and said I had spilt my tea. Then I left.
Remembering this event now, I still feel flame cheeked and filled with embarrassment. I went home in floods of tears, vowing never to go out during a flare again.
I later spoke to the friend, who thought she had upset me as I left so suddenly, I admitted what had happened and she was so warm and kind, she hugged me and reminded me she was a mum too and was used to dealing with body fluids. She made me promise that if it ever happened again, that I would just tell her and that it just wasn’t a big deal. She reminded me that I had once cleaned up her sick after a bit of a crazy night out and let me know that all those things I was worrying about, that she would be disgusted, or would laugh, or that she would not want me round, that they were in my head and she was my friend and would always be there for me.
My main message in this post is that you need to speak out, you need to talk to someone about your illness. The biggest symptoms of IBD in my opinion are shame, embarrassment and isolation. I swear that talking to your loved ones will help, they are feeling as bewildered by your diagnosis as you are and probably feel upset, worried and useless. You have to learn about your illness so you can help your loved ones understand too.
There are some amazing websites about now with so much information, as well as lots of blogs and youtube channels, Facebook groups and people like me who will openly talk about life with IBD. Utilise these options for information and support, you are not alone, there are almost 300,000 people in the UK with IBD and 5 million worldwide. I know it feels like your world has ended, that the life you thought you were going to lead has gone, but I can tell you this, you ARE NOT ALONE. There are many out there feeling the same as you and you can learn to LIVE with IBD, it might change your path but it does not end it.
Take a look at charity Crohns and Colitis UK, a great source of advice, information and support and also check Facebook groups, forums and blogs for support. One friendly hint is to remember that the ill people are mainly the ones talking online, the fit and healthy ones are off living their lives, so just be mindful that forums are not the best overview of the IBD population!
I know you see many stories, mine included, that talk about surgery, ostomy bags and all many of scary things. Around 1 in 4 people with Ulcerative Colitise will need some form of surgery (more with Crohn’s disease) and so it is an issue, but do remember that 3/4 of people with UC will not have surgery and will be managed with medication. Whatever path you have to go down, living with a chronic illness such as UC is a lifelong issue. It will change some aspects of your life but this diagnosis isn’t the end, it is just a change. You can still lead a wonderful, full and happy life, I know it can feel, especially during a flare, that your illness feels all consuming and that it takes over every aspect of your life, but stay strong.
I have been writing about life with Ulcerative Colitis since 2013 and so do take a look through the site, specifically this post of the A – Z of IBD that has some good information and take a look at the So Bad Ass Facebook page and twitter page to chat with other people with IBD.
You can always contact me if you want to chat privately, but please remember that Im not medically trained and so my advice is always anecdotal and from personal experience, if you have any urgent medical issue, you should ALWAYS speak to your doctor or nurse and NEVER just take advice from the internet!
Love Sam x