This month I’ll have 2 main blogging goals. 1. I will blog every day in May as part of Rosalilium’s BEDM initiative (wish me luck!) and 2. I will keep increasing my content on gut health; since world IBD is just around the corner (I have such an exciting giveaway to announce in a few days’ time!). With an appointment with my surgeon in a couple of weeks, I started to think about what I knew now, compared to when I was diagnosed over 2 years ago. I realised so much of it was gained from my own research, support forums and general life experiences over the years. Cue this blog post- the many things your doctor doesn’t tell you about IBD- but really should! Note, a few of these are tongue in cheek since I didn’t want this to be a really negative post; just one to raise awareness of the knowledge gaps that still surround IBD.
1.That being diagnosed will change your life. An interesting statistic popped up on my twitter timeline recently:60% of Ulcerative Colitis patients felt it was difficult to live a normal life- while only 40% of doctors agreed this was the case. This suggests that how patients perceive their lives is different to how our doctors see it. While most changes can only see negative, there can be positives (such as realising who is really important to you and in my case, exploring my writing talent!) Either way, life as you knew it will definitely change.
2. That diet does make a difference
If your doctor brings up the topic of diet at all when you are first diagnosed, it’s likely that they’ll be quick to dismiss there is any connection between IBD and food. However, as a patient- we quickly learn that some foods can cause a hell of a lot of pain and which are best to calm an angry gut! (Click to read more posts about IBD and diet)
3.That you’ll experience a whole range of symptoms that seemingly have nothing to do with you colon. Fatigue? Hair loss? Mouth ulcers? Anxiety? Skin rashes? Nutritional Deficiencies? Welcome to the IBD club.
4.That you can’t just take a pill and it’ll go away. Sometimes you’ll take your medication and feel like crap, other times you’ll suddenly find yourself in remission and not sure how you got there. There’s no logic to this disease at times but many patients initially believe that medication can just make their IBD disappear. Nope, this is a lifelong commitment!
5. That at least once a day someone will ask about your IBS and you’ll try really hard not to correct them again.
6. That the medications you take with a whole host of side effects, ranging from weird things you can’t pronounce to the big C. What’s more, since your doctor can’t explain them all to you- you’ll often think you’re suffering from another illness altogether, until you put 2 and 2 together.
7. That it can have a massive impact on your mental health: from the anxiety of future flares (I’ve blogged a whole post on this!) to a huge dent in self-esteem and changing your body image.(again, checkout this post!) This is something that I feel needs urgently addressing.
8. That as soon as you meet someone that also has IBD, you will instantly want to be best friends.
9. That you’ll never fit everything you need into your bag. Everything from dressings, to tummy friendly snacks, from medication to heating pads! Those clutch bag days are over.
10. That you’ll roll your eyes when the nurse warns you the needle might hurt. You’re so used to blood tests that you barely flinch- hell, you’re almost used to the camera test (I said almost…)
11. That hangovers are a thousand times worse. So. Not. Worth. It. On the plus side, you’ll save lots of money by not drinking!
12. That checking where the nearest loo is or the safest place to eat, will become second nature to you (even when will). Having IBD gives us an in-built GPS for these things!
13. That 90% of the stuff you read on the internet is other rubbish or super confusing. It’s up to us to wade through the fake cure stories to get to the useful info!
14. That you’ll have days where it feels like nobody at all can understand.
15. ...and days where it seems it have made you a better person. It teaches you to be stronger, sweat less about the small stuff and be grateful for the good days. It makes you mither less about your body fat and realise the people in your life that can be relied upon (the outcome may even surprise you.)
So that’s my 15 things your doctor doesn’t tell you with IBD. I’d love to hear yours! Comment below and if you enjoyed this then please SHARE. Let’s get showing everyone what life with IBD is really about!