Unfortunately the infliximab infusions that I had started recently for my Crohn’s have had to be stopped… my Crohn’s symptoms were much improved with the infliximab but I am in the <1% that has liver issues with the drug. I think the consultant said that I possibly had drug-induced lupus (I was a bit upset, and didn’t really take everything in!). Possibly explains why I’ve been feeling meh lately. My liver function tests (LFTs) are very high (up to 6 x normal levels), and so far they are not coming down. At least they are not going up, need to think of the positives! I’m getting my blood tested again this week and I’m keeping fingers crossed that the LFTs are heading down, otherwise there has been chat of having to have a liver biopsy.
Anyway, it’s left me in a situation with my Crohn’s meds… there is only one more licensed drug that I can try but I need my liver to be healthy before we start and the drug is also apparently not going to start working straight away… so I have a number of months ahead of me where I will be only taking azathioprine (which wasn’t working for me on it’s own anymore, hence the reason for adding in the infliximab) and I’m rather concerned that I will have another bad flare-up. The consultant has mentioned surgery for the first time, and that scares me somewhat. So, I have decided to be more pro-active and take better care of myself.
You may have seen on Twitter/Instagram that I have started a restricted diet, and I’m now into Week 2. I have cut out alcohol (obviously a must given my liver is f*&ked right now), caffeine, wheat, dairy and as much sugar as possible. I’m still eating fruit and honey, but I’ve cut out cakes, biscuits, chocolate, Haribo, fizzy juice etc.
I think I should be able to sustain the diet, it’s been ok thus far. I’ve been doing some research into recipe ideas and bought the Sarah Wilson books as well as Davina’s Sugar Free book.
What have I been eating you may ask… well here are some of the meals that I’ve had over the past week:
Poached eggs on gluten free toast / Bacon and scrambled eggs / Coconut milk yoghurt with a handful of fresh fruit / Sarah Wilson Baked Apple & Cinnamon Porridge (with oat milk)
Home-made soup / Sandwich (GF bread, no cheese obvs) / Baked potato
Warm chicken salad / Chilli con carne and rice / Burger with GF bun and fries / Turkey and vegetables (at my work Christmas party!) / Sushi (although I’m realising now that this had sugar in the rice as I could totally taste it after a week of no sugar. I had never noticed before that sushi had a sweet kick to it!)
GF tortilla chips and guacamole / banana / vegetable crudités and humous / raw dark chocolate (I’ve had two squares of Conscious orange chocolate today, just to curb my cravings!) / handful of almonds / GF oatcakes
Hot water and lemon / Fruit tea bags… I’m struggling without my cups of tea and regular cows milk!! I’ll get used to it eventually I’m sure.
I’m learning that I need to be organised, and so I think I will start trying to do meal planning again. I’m noticing already that I feel a bit more energetic and less bloated, and that’s after just 1 week of the diet. I’m sure things will only get better as I keep going.