Throwback to an eventful Thursday afternoon in September 2011 when I was sat on the recovery trolley trying to grapple with the fact my latest test had discovered I have Crohn’s Disease. It was an understandably emotional time; the gravity of the situation was palpable – it was a ‘disease’, a lifelong and challenging illness – but I was also really unsure of what this meant for me going forward.
The months ahead were that of my brain and body trying to recalibrate just what my new ‘normal’ was going to be – how this would feel and look like to me. In those months I worried constantly about getting sicker – which I did, frequently as we struggled to control my flare ups – and I worried about working, finding a boyfriend and just how much all of this shite – literal and metaphorical in all the senses of the word – would impact on me and those closest to me.
The more that I worried about those things, the more out of control I felt. The more uncomfortable and angry I became at my unfair hand in life. Things came to ahead in 2013 when I flared badly and all I wanted in that moment was to feel at peace with this beast.
However, there is no one big secret thing to feeling more comfortable with IBD.
But with that being said, feeling comfortable with your IBD has – for me, at least – been quite important. As I’ve gotten older and more comfortable with how my own IBD reacts and presents itself, I’ve found that it’s become more about ‘getting used to it’. This is something that takes a) time, b) effort and c) experience.
So, I’m here to share my tips on how to feel comfortable with IBD. Some are simple things that would and do become second nature and others area bit more personal and tricky.
- Learn about IBD and its signs and symptoms. If you don’t understand issues about your disease, make a list and be sure to ask your team the next time you see them. This can range from what your medications are for, what side effects there might be and how long you should expect to use them. Become and informed and educated patient. Remember that everyone with IBD is different. There is no “typical case.”
- Find someone who you can talk to about your condition and who will provide a sympathetic ear. The first couple of months living with a diagnosed chronic illness are like a roller coaster of emotions, you don’t need to go through it alone.
- Don’t do more than you can physically manage but don’t do less than your potential just because you have IBD.
- If medications have been prescribed, take them regularly as prescribed.
- Some medications need to be continued even when you are well; their purpose is to keep you well.
- Attend your routine GI clinic appointment as well as routine scans and scopes. They help maintain your disease even when your stable and can highlight possible issues, such as early stage cancer or even surgical problems.
- Listen to what your body tells you – it is yours and yours alone! There is so much advice on what to do or not do, what to eat and not eat with IBD and really the only thing that matters is listening to your own body. When it comes to listening, be mindful of what you can do to correct it, if you go a little overboard! But, it’s all a learning curve.
- Celebrate your victories!. Even the small ones. Taking your medication on time. Overcoming the fear of blood tests. Rocking a great colonoscopy prep. Whatever it might be, celebrate it! There are still so many people out there who do not know the whole truth about having IBD. Their negative attitude and feelings should never make you feel like what you’re doing to cope with what life has thrown at you is wrong or ugly. This is your new normal and you choose to embrace it.
- Focus on the positives! Your mental health can take a huge battering when it comes to living with IBD. Feeling paranoid or anxious or even less of a normal person are all valid feelings and thoughts. But dwelling on the negatives – how different you are now, how you might not fit in, how you might feel embarrassed or ashamed or not worthy – these things can have serious ramifications. Now, choosing to feel positive is hard, I won’t lie. It’s not easy every day to be positive but it has such a good impact on your mental health, it is worth it. Find people who get it and surround yourself with them. Find some funny in the poop and see yourself as different, unique and a superhuman.
- Adapt but don’t let it stop you from living. Life won’t be the same as before and you will have to adapt. But change and adaptation is part of life and it should not stop you from living your life the way you want to.
How do you feel comfortable with your IBD? What worried you most about having a IBD? How has that changed? Do you have any different tips?
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram