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!)
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.
6. Read Fellow IBD-ers blogs.
Sometimes doctors just don’t get it! What it’s really like to have pain, those ‘uh-oh’ moments of realisation at the start of a long journey or the exhaustion that comes wit an unpredictable disease. The blogs below are a fab resource and learning more about IBD. In particular, Sarah Kay Hoffman’s ebook: A Gutsy Girl is an amazing introduction to healing IBD holistically.
7. Try Turmeric
Turmeric is amazing. I can’t be bothered to rewrite all of its amazing benefits so I’m just going to repost one of the infographics I made for my turmeric posts.
There’s some very exciting studies coming out about turmeric! If you want to start simple, just try adding a spoonful of 100% turmeric powder to sir fries, curries and roast veggies or read my guide to turmeric here.
8. Buy a Juicer
Juicing is amazing! I’ve never met someone who started juicing and didn’t just love it! It gives your gut a rest, gives you a chance to get the nutrients of high-fibre veggies that are tricky to tolerate (FACT: Juice contains 0% fibre, just goodness so it’s perfect for those on a low-residue diet!) and it’s a great anti-inflammatory. You can read more about about juicing for IBD and IBS here or sign up for my newsletter at the top of the page!
9. Accept that you have IBD, it does not have you!
People always seem really surprised that I travel around and live abroad. They seem to think anywhere else outside the UK is not safe when it comes to IBD. I totally understand where these people are coming from as I was like this many years ago (pre-diagnosis). However, since living in China, I realised that most places are pretty clued up on IBD right now and the treatment can be just as good as you’d get back home. I’ve blogged several times about traveling with crohn’s as I think it’s so important to just get out there and see the world! In particularly, Asian food is very kind to IBD tums as it’s naturally gluten and dairy free and full of that flare favourite: rice!
I’m not suggesting everyone quits their job and embark on a trek around the world but set yourself some goals outside of your IBD. Step away from crohn’s forums for a weekend and start on an online course from Groupon, book a weekend away, try to cook some delish gluten-free recipes. It’s so important not to let this disease consume you!
10. Accept that change can be a good thing
In my post about being diagnosed with an autoimmune disease, I wrote about letting the disease change you. Sometimes we spend so much time focusing on what we’ve lost. Be it friends, nights out where you can let your hair down (I can do one glass of vino tops!), the ability to eat a McDonalds without being violently sick (Why do I still crave cheeseburgers when I know how disgusting they are?!) It can be so frustrating that we can’t do what we did before that sometimes we try to do it anyway! Cue: flares and worse: guilt. The best thing (which I’m still no expert on) is to accept this is your life now and there are lots of positives that can come out of it. Perhaps you’ll find yoga gives you almost the same kick as tequila (ok , unlikely but stay with me!), perhaps your realise that friendships that centered around binge drinking were pretty rubbish anyways. Who knows, it’s gotta be better than moping around thinking about the past!
So that concludes my mammoth post! If you are still with me, thank you for reading and please share away to others who might find it useful!