The last time I spoke about Crohns was back in April, where I was actually mid flare up. I decided to write up another update and also talk about living with the disease as well as remission. This can mean daily ups and downs as well as the maintenance of a balanced lifestyle when feeling better. Invisible illness can be hard to understand, which I wrote about recently. It’s being able to speak freely about it and raise awareness that I have found to be really rewarding.
Health and Crohn’s Update
Since May I have been taking a new medication which took me a long time to get on the NHS. As you may have read previously on my post back in April, I was going through a flare. I kept getting blockages, sickness and couldn’t keep food down. Some days it was awful and others it was manageable. After a year and a half of taking Azathioprine and Pentasa, they just weren’t doing the trick and getting rid if the inflammation. So with my track record of over 13 years with Crohns, an operation under my belt and this recent flare they finally gave me the strong (good) stuff.
I now take an injection called Humira, which I administer myself once every 2 weeks. I’ve got used to the process of it now but it was strange at first. Luckily my boyfriend Chris helps me and it doesn’t hurt much. It just feel stiff and achey the next day to walk on my leg, as I inject into my thigh. HUMIRA targets and helps to block a source of inflammation.
Crohn’s disease has been linked to an overproduction of certain proteins, including one called tumor necrosis factor (TNF), which is produced naturally by your body’s immune system (blood). For people with Crohn’s, overproduction of TNF is associated with inflammation in the digestive tract, which can lead to the symptoms of Crohn’s. Because HUMIRA blocks the action of TNF, it can lower the ability of your immune system to fight infections, but in turn helps reduce the amount of inflammation that causes Crohn’s problems. Like the issues I mentioned above of blockages, unable to eat certain foods, pain, sickness and vomiting.
This is the first drug I have used that has so far been a success. It took a couple of months but I really have noticed a dramatic difference to my life. I feel ‘normal’ and actually better than I have in a long time. The NHS allowing me this expensive drug has been a life changer and I am able to live to the fullest everyday. Learning from my misfortunes I now take steps to look after myself and my body whilst in remission.
With a lot more energy I can now goto the gym and exercise, which before I couldn’t do. I eat better during the week and am trying my best to stick to a balanced diet. This does mean the ‘occasional’ take away, chunks of melted cheese and cake but it’s all in good reason. By no means am I suddenly perfect at this lifestyle but I realised I also have to work at it, and not leave it all to the medication.
Living with Crohns
It’s important to remember that although I am in remission, I still live with this Disease and it will never be cured. I’m not the only one, any body with an underline health issue deals with things on a daily basis that you don’t know about. My daily life is currently consistent and hardly effected but I do get the odd crack in the foundation. Certain foods cause IBS like symptoms and tummy upset, as well as fatigue and weight issues. My body hasn’t ‘recovered’ from the last bout of steroid use, which meant a lot of weight gain and now excess skin. I am going to the gym to help this but of course this has effected my body confidence and way I carry myself.
Being in Remission is fantastic, and I can honestly say I am grateful everyday to feel better. The disease can take over a big part of my self, which I hate so much! Learning to look after myself, to accept my body for how it looks and enjoy every moment of good health can be a struggle. This condition won’e banish forever but having the freedom right now is the best thing I could ask for.
I hope this update on my health and Crohn’s journey has enlightened you about the effects on daily life. There is always hope for long term conditions and medication is improving all the time. Staying motivated and pushing through the bad times is tough, but anyone can do the same. Let’s hope this remission is a long one and for anyone else reading this with Crohns or an IBD, hope you keep fighting like I do everyday.