I am currently in the middle of a big flare-up of gastroparesis, which started about two months ago. Prior to this flare, I could eat small amounts of most things, and though I often felt nauseous, bloated and uncomfortable, these symptoms were controllable with medication and other techniques. Currently, I'm not able to eat anything solid, and have just spent a week in hospital, where I had some injections of Botox into the lower opening (pylorus) of my stomach. Normally the pylorus holds the stomach closed until the food has been churned and mixed enough for it to be allowed to continue on its journey through the digestive system. The Botox relaxes this muscle, meaning that the food doesn't get stuck in my stomach, but can just drain through by gravity.
I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.
I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me. It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.
I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.
So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.
While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.
The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.
People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!
The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives
Tear the bread into small pieces and put them into a large bowl.
Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.
Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.
Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.
Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish.