To commemorate World IBD Day I thought I would talk about the ten things I wish I knew and would tell other people dealing with something that ended up changing my life forever. No matter how often we tell people that the disease doesn’t control us sadly to an extent it does and feeling alone and isolated is one thing we can’t control.
2 – You have every right to find out more about your medications before you are put on them. This was more important for me as I grew up and being able to take control of my care. Beforehand I just trusted wholeheartedly the medical staff looking after me and when I was transferred to adult care I was able to research and had enough confidence to ask about the medications we were trialling.
3 – Having certain medications can change how your body looks, how you feel about it and can come with some unpleasant side effects. For instance when I was 14 when I was on azathioprine and I wasn’t aware that when you go out in the sun it is advised that you need to really keep up on applying sun cream and wearing hats etc. All I knew was that I needed to have weekly blood tests to check my white blood cells; I missed the first half of science every Wednesday and still have some lovely scars on my hands to prove it. That also has left me with severe panic around needles of any kind and cannulas in my hands.
4 – Steroids are like the Devil’s tic tacs and they may or may not calm the inflammation, they come with their own issues. Weight gain, addiction, mood swings and sleep issues to name a few. They are often worth a try to calm acute inflammation because when you are in that much pain you often will accept everything.
5 – You really aren’t your disease but the thing that makes or breaks us is how we deal with it. Yes there will be times when you can’t face getting out of bed or you have to cancel plans or miss school/work, but you need to listen to your body and accept that to do these things tomorrow or further in the future you need to have days where you dial things down and do nothing.
6 – Inflammatory Bowel Disease like any other chronic illness can have a detrimental effect on your mental health. Please don’t just pretend you are okay that is the single worse thing you can do. If I had spoken to someone about the mixture of weight gain and how bloated my stomach looked from the chronic constipation when I started to develop an eating disorder I may not be still struggling with it and the body dysmorphia, or at least as bad as I am.
7 – It wont stop you from finding love. This is something I hear about a lot – people worried no one will love them because of it. I never really thought about that as by the time I thought about dating I had lived with ulcerative colitis for 5/6 years by that point and was just normal life for me. I was lucky that the people I dated didn’t seem to care about it as long as I didn’t act like it bothered me. I was also lucky to be in a long term relationship for my first surgery and married for my second and both of them were really supportive about it.
8 – Now growing up I really didn’t want children because I wasn’t particularly maternal but when I changed my mind the colitis had come back into my rectum. This coupled with the natural stress that any couple has with conceiving and being told my fertility could have dropped up to 25% after my first surgery really made me think about other options into being a parent. Obviously as many of you know I have two beautiful children Ra-Ra who was conceived whilst I had pouchitis and Button who I conceived after my ostomy surgery. Many women go on to have uneventful pregnancies (which is what you want) whether they have Crohn’s or Colitis. The way I look at it is there are plenty of healthy women who struggle as well so yes IBD may play a part it certainly is just a luck of the draw when it comes to having a baby sadly.
9 – IBD can make you so much stronger as a person, it has the ability to enhance the natural trait of empathy we all have (or should have) It allows us to easily understand when others are poorly be it from chronic illness or not that they need a rest or someone just to check in on them and let them know they aren’t alone. We tend to have a good bedside manner too sadly this can be because of less than caring staff (for whatever reason) and we feel like we need to fill a void or have been looked after by staff who go above and beyond and then they become our role models.
10 – Surgery for either a Jpouch or a stoma is most certainly not the end of the world. Having an ileostomy has literally saved my life and it took a long time to accept that it may have been on the cards. For instance when I was 14 I felt like I was far too young to have surgery when there was other medications that may have given me remission. When I had my Jpouch surgery the mere idea of having a stoma made me freak out; no one said it would be temporary nor did they explain it was to allow my small bowel to rest after the surgery. But when I decided to have my stoma I had to fight hand tooth and nail for it and now I honestly wish I was given it sooner.
What would you tell people with IBD to let them know that is isn’t all isolation and pain?