I find it very apt that World IBD Day falls on May 19th, my late grandma’s birthday. Grandma was a writer and literature lover; her favourite poem was ‘Warning’ by Jenny Joseph. For those that don’t know it, the poem speaks of being an old lady and doing all manner of rebellious things, such as spitting on the pavement, hoarding pens and wearing purple(!)
Not just my favourite colour
A number of years ago, Crohn’s and Colitis UK changed its name from NACC and with it, came a change of colour: red to purple. So now, every year on grandma’s birthday, I shout out on social media, asking the world to offer their support by wearing purple. For some reason, it makes me laugh, as though I can hear my grandma delivering the lines of that poem. It makes me feel as though I am wearing purple as a way of sticking two fingers up at the world, rather than to identify myself as an IBD sufferer. Let’s face it, polite rebellion is far more appealing than chronic illness.
What’s the point?
But forgive me, for I am digressing before I have even really begun. World IBD Day 2017 was a week ago today, hence these particular musings. Timed for the global awareness day, I received an appeal notice from Crohn’s and Colitis UK in the post. There was a detailed letter containing a case study, explaining the importance of diet in IBD. This is not something which really needs pointing out to me, having always been on a restricted diet of varying degrees. What shocks and terrifies me, though, is the fact that despite the obvious links between IBD and nutrition, there are still no specialist IBD dieticians in most NHS hospitals. That is what the charity is currently trying to raise money for – to provide specialist nutritional care to those who need it most.
This particular cause struck a chord with me. Through my current course of treatment, I have had the privilege of being cared for by a wonderful dietician at the Bradford Royal Infirmary. She has had a great deal of prior experience with Crohn’s Disease, which is why my consultant approached her to take me on, but she is not paid to be a dedicated IBD dietician. How can a gastroenterology ward – a ward which deals with the digestive systems of its patients – not be deemed worthy of a dedicated diet and nutrition team? It genuinely baffles me.
When I was discharged from hospital last spring, I was told by my consultant that it was time I adhered to the textbook low-residue rule. In other words, I had to cut all fibre out of my diet entirely. A lot of that is self-explanatory: white spelt instead of wholegrain, white rice not brown, no corn crackers, no rice cakes, beans and pulses are obviously out, gluten free biscuits and cakes are out as they all contain oat or corn flour, no salads or raw veg, no skin, stalks or seeds in fruit and veg and absolutely no dried fruit whatsoever. However, there is a whole section of grey thrown into the mix, just to make it tricky. Some fruits are okay, veg cooked a certain way can be fine, all quorn products are out completely, as is tofu, caution even has to be exercised when it comes to choosing jams and vegan ice creams. So you see, it’s a bit of a minefield for average Joe (or me!) to make sense of. Needless to say, looking on the internet is potentially more of a hindrance than a help. With so much conflicting information and so many self-professed experts, it is nigh on impossible to know what or whom to trust.
For us, this was really frustrating. Lovelyman wanted to be able to help and support me, by preparing meals that would build me up, despite there being so many added restrictions. I should probably point out that I have been vegetarian for sixteen years (my only chosen restriction) and am allergic to dairy, wheat, garlic and under-cooked eggs – don’t ask! A few years ago, I made myself start eating fish again, as it is good for me. However, I developed a severe allergy to all white fish when I was about fourteen, so that actually only leaves salmon and tuna. People often gasp at the prohibited list, offering sympathetic sounds and wondering how I get by. The allergies don’t bother me in the slightest. I have always been aware of my special diet and for as long as I can remember, I had a list of forbidden foods, and took packed meals wherever I went.
On that score, things are so much easier nowadays. When I was five, I was gluten free for a while. I can remember mum’s desperate attempts to find things to feed me to replace bread. There was one type of gluten free bread which was available on prescription, and came in a can. If I tell you that simply writing about it brings back the smell, and dwelling on that thought for any longer than a split second brings the taste to my mouth as though I were eating it now, you probably get the measure of how unpleasant a substitute it was. Around a decade ago, I discovered spelt. All of a sudden, I could bake bread that tasted like bread. I could cook pasta that didn’t turn to mush. I could enjoy cakes that weren’t powder-dry and dense. It sounds a little extreme to say that spelt changed my world, but it certainly changed my approach to food. As for the free-from ranges in the supermarkets these days – all I can say, is WOW! Gone is the need to order biscuits on prescription. No longer are we required to seek out health-food shops in order to buy snacks. We can have a vaguely (dare I say?) normal approach to grocery shopping, albeit with a higher food budget required.
Where to turn?
So it wasn’t that the low-residue limitation bothered me as such; it just concerned me that I wasn’t getting it right. I was incredibly ill, and we were desperately trying to avoid hospital, further surgery and a naso-gastric tube (which wasn’t yet Nelly, as I hadn’t met or befriended one at that point!) all of which were terrifying prospects.
In our struggle to find the definitive guide to low-residue eating in order to gain and sustain weight…well, we couldn’t find such a guide, because no such guide exists. At that time, I wasn’t yet under the care of my dietician, so I was given a referral to see a dietician. We waited four months for the appointment to come through, during which time, we stuck to the rules religiously, adhering to every website’s forbidden list and cutting out any extras we had a question mark over. You can imagine how much variety there was in my weekly meals.
The first dietician we saw was lovely, and did her level best to help us out. However, it was clear she didn’t really have a full understanding of my condition and my individual needs. Some of the information was still fairly generalised, and it took an awfully long time to find a way of sustaining the eating regime without my having serious deficits in certain food groups.
Of course we are in a different place right now, and my nutritional therapy is going brilliantly. I don’t even hate Nelly so passionately these days. However, there is a part of me that wonders whether we could have arrived at this course of action sooner with the help of a dedicated IBD dietician. To think that I could have been a year further on with my therapy….well, it’s not particularly helpful to dwell on those thoughts, so I tend not to, but I can’t help pondering.
The gift of giving
That brings me back to the Crohn’s and Colitis appeal. People’s generosity is something which never ceases to amaze me. I am not only talking about money and material goods here. There a thousand more ways to be generous than by concrete acts of giving. So many people show immense generosity of spirit, people give of their time, their energy, their emotional reserves; like I said, there are at least a thousand ways to be generous. Charity is just one of those ways. A few months ago, a close friend of my mum’s asked mum if she would be happy to cash in a rather sizeable chunk of the premium bonds they shared. She wanted to cash them in and give them to me.
It wasn’t a gift to put towards a shopping spree or a holiday, but a gift for me to donate to one of my charities. By ‘my charities’ of course, mum’s friend meant any of the Crohn’s and Colitis causes here in the UK. She and mum collectively decided that the donation should be made in my name, and neither of theirs should even be mentioned.
I was genuinely blown away. I am used to being overwhelmed by people’s generosity when asking for sponsorship, but this single unprecedented act of altruistic kindness really touched me.
I wanted to consider my options carefully, as I always feel a great sense of responsibility with charity, particularly when the money is coming from somebody else. That might sound silly, as any research into the disease has got to be valuable, hasn’t it? The answer is, of course! That said, if I’m giving such a significant gift, I want to know that the cause is something as meaningful as it can be. Last Friday, I found my cause. The letter had a series of check-boxes for people to donate either £5, £10, £20, £30 or ‘Other Amount’ so clearly, every penny really does count. The thought that I could potentially help someone else get to this stage twice as fast as I did, makes some of the crap from the last however many years just a little more worthwhile. I have always said that if I can use my own experiences to help raise awareness, so that people don’t have to keep suffering in silence, then my lifetime with IBD will not have been a waste.
This post isn’t about asking for sponsorship, or donations or anything else, I simply wanted to offer up some food for thought on World IBD Day. For anyone who is interested in exactly why the charity is so busy raising money, visit Crohn’s and Colitis UK website to see what it’s all about.