7 things I wish I’d known about Crohn’s when I was diagnosed.

1. You can get better

Nobody ever told me that I could get better. When I was diagnosed at 23 I was told that I had a horrible, debilitating disease for which there was no cure, and that I’d have to manage it for the rest of my life with medication (non of which were working for me btw).

So that was a bit stressful. I don’t think that approach helped me at all. Looking back I think it threw me into a huge panic which no doubt made my condition considerably worse.

There is no ‘cure’ for Crohn’s disease but you can get into and stay in remission and be healthy and not have a hugely restrictive diet or worry about when your next flare will be. This is possible. I wish someone had told me that in the beginning.

2. Eat proactively rather than reactively

Most of the talk around Crohn’s and food is around what people can and can’t eat, particularly when they are in a flare. Often advice is about foods which are easily digestible. I was told to remove fruit and vegetables and eat a lot of white and beige foods (white bread, chicken, mashed potato) and up my intake of calories through boiled sweets. Well, it was a long time ago! Haha.

Eating pro-actively prioritises gut healthy foods and removes poor quality and inflammatory foods which will hinder gut healing. It’s all the usual suspects and not rocket science at all. Of course it’s so much easier to maintain this once you get our of flare. A slowly slowly approach will be needed initially.

There is a paradox between what’s easy to digest (void of fibre) and what’s actually going to help your body to heal. The shitter about Crohn’s (pardon the pun) is that the foods that make you better are difficult to eat when you are flaring. But we must prioritise fibre and whole foods (soups and stews are really helpful) if the gut is to heal and to build a good microbiome, which ultimately will keep us healthy.

3. Your body is not attacking you. It’s trying to protect you from something.

Your body doesn’t just turn on you, that makes no sense. It is responding to something it perceives as a threat. Find out what that something is and you’ve cracked it.

Let’s face it, the way we live these days is quite a long way off what nature intended, so it’s hardly a surprise that our bodies are getting confused. Everybody’s causes, triggers and drivers are different, it could be a food intolerance, an infection, toxic exposure, a trauma or chronic stress. Getting to the bottom of what’s going on for YOU specifically is crucial to better long term outcomes. If you flare every time you get stressed, then you need to deal with the stress.

4. You have choices. Medications and surgery are not the only options.

Standard medical advice can really only offer you the meds, and the meds are pretty heavy duty, and then surgery when the meds don’t work. I wish someone had sat me down and explained how inflammation and the gut works, so that I could understand all the things I could do to influence them myself. I could have changed my life in terms of sleep, stress, exercise, diet.

There’s a whole load of things which push you away from inflammation and to better gut health, but it took quite a while for me to figure this out.

5. Don’t underestimate the mental health bit

I certainly didn’t really understand this until much later on, but I’m sure it’s one of the reasons I now keep well.

I think in my case, ironically, it was the illness that made me stronger as a person mentally, and helped me to get a bit of perspective on what’s important in life. But I didn’t make this connection until years later and it was all a bit of a coincidence. Over the years I’ve done quite a bit of meditation and yoga and I’m sure that has helped a lot. I now know that fundamentally ‘I’m okay’ and when I feel what’s going on in my head, in my gut, it’s always a good reminder to get on top of my thoughts and emotions.

6. Work on healing your gut lining and optimising your microbiome.

I had no idea that the gut had a lining and I don’t think anyone knew much about the microbiome back in 1998, but these guys are key to better outcomes long term.

There’s a lot you can do to support the gut wall and to promote a thriving microbiome through foods, fruits vegetables, adequate protein and whole grains and legumes and nutraceuticals which will help to soothe the digestive tract (e.g. marshmallow), and others which help the body to repair itself by increasing cell turnover. (e.g. L-Glutamine). The bad guys are things like stress, infections, smoking, alcohol. It’s a slow process.

7. You are not powerless. You can do things which will make a huge difference to how this turns out for you.

I wish I’d known I could help my body to heal and that I had some agency over how things went. In the beginning I was really scared.

I had no idea if I was doing the right things (I wasn’t) and I didn’t know how things would progress. I felt like everything was really out of my control, I’d just been dealt a bad hand and that was very frightening.

I don’t feel like that at all now. I’m really healthy, I exercise a lot and try to protect my sleep. I eat an amazingly varied diet and don’t worry at all about being ill. I know what to do if I as start to go a bit ‘sideways’. I don’t have flare ups. I’m very grateful.

If you are newly diagnosed with IBD or have been struggling for a while and you’d like my help please get in touch.