You Don’t Know Crohn’s . . .

“Are you the lady with Crohn’s Disease?”, one of my colleagues, who I don’t know very well, asks over the open plan office desks yesterday. “Yep, that’s me”, I say. She comes over, very eager and interested.

“What are you taking for it?”, she asks. “Humira”, I say. “How are you finding it?”, she asks. “It makes you feel like crap for 24 hours after you take it, but it seems to be holding things steady at the moment. And it beats the hell out of steroids, which made me crazy.” “You should try blue-green algae! You just mix it with water and drink it!”, she says.

 Isn't this the plague of the Lake District? And seriously, you want me to drink this?!!

She continues, “I have pancreatic cysts and they want to take out my pancreas because of the risk of pancreatic cancer which is the worst, but my friend told me about blue-green algae and it really works and I’m feeling so much better! You should try it, all you do is mix it in water in the morning and drink it. How are you getting your vitamins?”

I tell her, “I’m still on calcium and vitamin D3 tablets because the steroids sucked the calcium out of my bones and I couldn’t get dairy down for months. And I use multi-vitamin drops because vitamin pills don’t agree with my stomach.” “Get a juicer! Juicing is the best!” she squeals.

I almost used up a whole spoon trying not to roll my eyes or be rude. I talked about the craze for juicing for Crohn’s in an earlier blog post -http://foodlovingcrohnie.blogspot.co.uk/2014/04/experimenting-with-v8-juice.html While I know lots of people swear by it, I’m still not convinced I would use it as I couldn't even get on with V8 juice (I just really don't like it), and I can think of much more fun kitchen porn gadgets to buy with that amount of money.

“And you should eat lots of kale and spinach, it’s great for you. And have you tried ancient grains, like quinoa?”

You just really don't get it . . .

While I do really appreciate her concern for my health, especially as I hardly know her, all I can think is “Honey, You Don’t Know Crohn’s”. The problem with her suggestions? One word - fibre. While fibre is ‘part of a healthy diet’ for most people, for the most part, fibre spells absolute hell for people with IBD.

And I absolutely hate kale. I mean, I really hate kale. So much so that “Thou shalt not eat kale” made it onto a list of Ten Rules for Living some high school friends and I put together on a slightly drunken evening along with “Thou shalt not date those on the never-date list”. (Long story, but still good advice 20 years on). 

Kale. When cooked, it looks suspiciously like blue green algae. I'm sure it smells and tastes like it too.

So telling her how much I dislike kale gave me a slightly easier way to gently refuse her advice. I had to explain to her that I am under the care of a dietitian and what a low residue-low fibre diet is and why I am on it. I’m not sure if it was a look of horror or bewilderment that she had on her face as I was telling her what I was being instructed to eat by the hospital. “I know, it’s totally counter-intuitive”, I told her, “but strangely enough, this isn’t bothering my guts.” I then explained how much more restrictive it is for my father who has an ileostomy. Amazing how when a conversation turns to stomas, people seem to make themselves scare pretty quickly.

I bet half of you have just stopped reading this post.

Really, I do appreciate her concern, but I really wish people would learn more about someone’s health condition before touting out great ideas for dealing with it. If she had IBD herself, or knew someone with IBD, or even had IBS, I may not have been so irritated, because at least then, she would have had a better starting point with me. I’m in no way underestimating how serious pancreatic cysts can be (anything with the pancreas can be very serious), but there really is no comparison with IBD here, especially when it comes to diet.

I’ll admit that I have been equally guilty of giving out (lots) of unsolicited advice about health over the years, but I have a lot of personal experience with chronic illnesses and have a lot of friends and family with other chronic illnesses, so I have unfortunately had to learn about a lot of things over the years. And failing that, there is always Google. The internet is full of crap, but there’s lots of good information out there too. Like this- http://www.crohnsandcolitis.org.uk/information-and-support/information-about-ibd and this - http://thegreatbowelmovement.org/

So here’s my unsolicited advice; please do a bit of homework from reputable sources before deciding what’s good for me. Or better yet, why not just ask me about my condition and how it affects me? I’m not afraid to talk about it!

I need to get this hoodie.