Happy Crohn’s and Colitis Awareness week! Although it might seem odd to celebrate disease, it is a great way to spread the word about life with an autoimmune disease to encourage more people to get tested (and not get fobbed off with ‘IBS’ but that’s a whole other ranty issue) and deal with stigma (it’s not just about going to the toilet!)
For me, it’s a chance to celebrate the positives amongst those who feel like IBD is weighing them down.In fact, it’s been a year tomorrow (happy anniversary colon!) since I was diagnosed with Crohn’s and I’m pretty proud of how hard I’ve fought since. Although I’m not in the holy grail of 100% remission just yet, I’m pretty damn close and I’ve managed to pretty much my entire diet (which coming from someone who was living on junk Expat food in China is a massive feat!)
There’s already so many great infographics out there about the facts of crohn’s disease so instead this post will focus on practical tips on helping fellow IBD-ers, particularly the newly diagnosed. With this illness it often seems like everything is out of your control: the medications your doctors make you take: your erratic gut; the food diary which you try to stick to but follows no logical pattern! It might feel like you are fighting a losing battle but there are some small things you can do right now to help regrain your fight crohn’s disease and ulcerative colitis. I’m not talking about cures or promising years of remission, instead just simple things that you can do to remind yourself: ‘Crohn’s might have won this battle, but I’ll win the war!’
1. Knowledge is power
Here’s the thing about doctor’s: they’re dealing with thousands of patients every year. They assume you don’t want or don’t need them to explain the difference between UC and Crohn’s, the extra-manifestations of the disease or all the potential side effects of every medicine you take. Of course, you absolutely should know this information but you need to prepare for appointments by making a list of questions to ask. Chose reputable sites to do extra research like Crohns and Colitis UK . My personal bugbear is when people say they’ve got ‘inflammatory bowel syndrome’ or ‘chrons’. How can you fight a disease if you can’t be bothered to learn the name of it?
2. Google is not your friend
In complete contradiction to point 2, try not to google everything. As a known overgoogler (is that a real word? It should be!) it is really unhelpful in relation to crohn’s. Information is completely contradictory so I’ve since tried to wean myself off and instead stick to researching nutrition instead. Kick that google habit today!
3. You are what you eat.
One thing that drives me mad is people who say diet has nothing to do with this disease. Of course it does; diet has something to do with every disease to some extent. Food can either aggravate, inflame, cause pain or it can heal, soothe and fight. Of course to how much of an extent it can do that depends on many of other things like severity of disease, the immune system etc. But with an autoimmune disease, nutrition is important regardless of what meds you are on. Good food choices and getting to know what your body wants and needs is crucial to give yourself the best possible to chance to fight, prevent unwanted complications and beat dreaded fatigue. The first thing is just to give up rubbish. I once saw someone say the only thing they could tolerate was McDonalds and nearly banged my head on the keyboard. Nobody needs junk food , nobody’s walking around with IBD that’s one step away from a Mc-cure if only they’d eaten more french fries.
4. Explore intolerances.
After trying to giving up junk, another way to help your diet is to consider whether you are intolerant to something. I’m not talking about true allergies like coeliacs and lactose intolerance (which are actually easier to diagnose) but instead things you just can’t handle. For me, I felt much better after eliminating gluten and dairy but others have a problem with soy, corn, peanuts, nightshade foods etc. It’s a pain in the arse to do but it is 1000% worth taking the time to figure out if you do have any triggers to prevent er further pain in the arse! 😉 Don’t be fobbed off by hair tests, skin pinprick tests or doctors saying there’s no link. The only way to figure it out is pure trial and error. If you want to give your IBD a serious kick, research the Specific Carbohydrate Diet.
I’m not talking hours chanting but a few minutes a day of relaxation can really help. Checkout the app Headspace for a fuss free way to be a little more zen. It’s a free app that guides you through a 10 minute relaxation program.