In the 10 years that I have been diagnosed with Crohn’s disease it’s been the most roller-coaster ride I have been on in my life in terms of health and well-being. I don’t, in-fact I rarely talk about it. I really don’t want people to pity me, or feel sorry or even sad for me so I very rarely talk about it unless your family and I like to keep certain aspects of my private life, well private!
But I’ve been really touched and super lucky to talk and offer help to a young lady via social media who reached out to me for a little advise having seen a previous post I shared. She has just been diagnosed and struggling with how to adapt to life and it’s made me realise that it’s absolutely nothing to feel ashamed of and most importantly it’s nothing to feel sad about and you can lead a relatively normal life if you treat and maintain it during the early stages. So here I go..
So what is Crohn’s disease? It’s an Inflammatory bowel disease which causes inflammation in your digestive tract. The symptoms can vary but in large it’s extreme fatigue, extreme weight loss, malnutrition to some extent and severe diarrhoea (gross right?!). Unfortunately my diagnosis is in an area where it is inoperable , and I tend to get a lot of ulcers in my throat which prevent you from eating and drinking because you can’t swallow (which means you tend to get looked after in hospital for a while!), but my extreme weight loss and not being able to walk or move were one of my first signs. I suffer on a daily basis an abnormal amount of pain that’s excruciating, but when you have had it as long as I have you learn to deal and adapt your life accordingly. I have children now, and the last thing I want them to see is a mother bear unwell.
I’m lucky enough to be treated in Oxford with a Crohn’s specialist team who have been amazing in looking after me and during both C-sections for my little boys, for which I am forever grateful for. But when you speak to a Crohn’s specialist they still don’t understand what the cause of Crohn’s disease is. It could be genetic, bacteria related in something you have digested, an abnormal reaction to your immune system. But what they are sure about is that there is currently no cure making this a chronic illness, which is sad but totally manageable with a little help to get you through day by day.
If your condition is mild than you maybe the lucky ones who get to manage this without any medication. But your treatment ultimately depends on what type of Crohn’s you have. I have been on different types of steroids and other medication to try and help maintain and put a little weight on which hasn’t worked for me unfortunately. I’ve also tried Azathioprine and Mercaptopurine. They do help maintain and eliminate the pain with the odd side effects. But Since having my first little boy three years ago I have been in remission for two years with only two flare ups which has improved my quality of life dramatically!
Living with Crohn’s does have a huge impact on your life mentally and physically. When you are well you can lead a total normal life and no one would know any different but when your unwell and things take a turn for the worst there are few things that I do (not bible by the way!) to help me, as for me, personally I am really against medication and taking small steps to do my best and do it naturally.
Talking is something I wish I had done a lot sooner during my diagnosis. It’s such a powerful thing to talk open and positively about your illness. My husband and my family have been my rock and being able to talk (and cry!) has absolutely saved my sanity! So please please talk to your family, close friends or even close colleagues. It may even help them feel more reassured and they can offer the right support for you.
Now a lot of Crohn’s specialist will tell you food and diet have nothing to do with Crohn’s disease. I’ve tried various diets over the last 10 years which haven’t really worked for me or I’ve not really noticed a difference. The important thing is to eat a naturally balanced and healthy diet to help maintain your weight and strength. I don’t drink alcohol and haven’t for the last five years because it’s a trigger for me so drink plenty of water and try to stay off caffeine. I seem to loose weight instead of putting it on so sometimes the nutrition shakes your nutritionist will give you ensures you get a good intake of your vitamins and if you are lucky you may put on a little weight.
I pretty much cook broccoli 5 times a week! It’s a great way for detoxing the gut and super helpful for me when I have a flare up. Because now that I am a mum, I just can’t afford to be ill and spend any more time in hospital.
Yoga has been brilliant for me over the last few years. Twice a week it gives me the chance to stay calm, take two hours out to focus on breathing and my mental state which in turn helps me keep calm (stress can also be a potential trigger) and positive. Positivity is the key treatment for me. If you surround yourself with positive people it really makes a huge difference on your outlook on life.
Crohn’s now effects over 115,000 people and it’s becoming a lot more common than ever. Every person suffers differently, and every persons treatment is different. What works for one person may not work for you and that’s OK! Take each day as it comes. Some days are really bad but as long as you have your safe havens that are your rock you will get through this. In fact even talking about this has made me feel a whole better.
If you are looking for more information and not sure if you have some of these symptoms visit Chrons and Colitis website who are super helpful and have an online community for you to chat to other people who are going through the same thing but you would never know. I also wanted to thank my husband who really does take good care of me and has for the last ten years of my diagnosis. He has been my rock, and the same for my mother and father and siblings who always pull together to come and help me (and carry me when I am unable to move!). But most importantly I wanted to share this to thank that girl for not making me afraid to talk openly about it and if this can reach one person and help them in any way even if it’s to start the talking process then this was totally worth it!