After several years of feeling ok, or at least thinking I was feeling ok, it turns out that all is not well.
I decided to re-introduce myself to ‘the system’ (my name for the constant round of consultations, blood tests and treatment) last year when I experienced a few symptoms (rumbly stomach) that would suggest not all was as it should be. I went for the scan from hell and the results are in. My insides are in a bad way and we need to seriously ramp up the treatment to try and avoid major surgery.
It was a shock. I’ve been feeling ok. It turns out they’ve been finding this a lot in long term crohns sufferers. We adjust and get used to living with it and so we don’t outwardly show symptoms of what’s going on inside.
I will now be embarking on a year long course of a super drug which they are hoping I will be able to inject myself. I’m ok with needles. When they are in someonelse’s hand. We’ll have to see how I manage when I have to do the jabbing. The drug suppresses the immune system so first up I need to get a whole load of vaccines and they will have to do something about the fact I haven’t had a BCG jab, the drug puts you at a higher risk of getting TB, amongst other things. I will also be getting some counselling about the drug in advance of the treatment beginning.
If the drug works then I should be able to avoid major surgery. If the drug works moderately I will downgrade myself to minor surgery. There’s a 50% chance that if the drug works brilliantly then I will avoid surgery altogether, for now.
There’s little I can do myself at the moment, as the Dr said yesterday, it’s a terminal illness that will progress throughout my life and is not a result of anything I’ve done or not done.
That said I recognise that some habits minimise the symptoms and effects of the illness, so for the next year I will be making some adjustments.
1. Minimise stress
We can’t prove it, but the Dr did make reference to moving house and other stressful events that have taken place over the last year. My plan for the coming year is to keep it as stress free as possible. No major changes and lots of systems that keep things in order without me having to spend time thinking about them.
2. 6 – 8 mini meals
The narrowing of certain areas of the bowel means that large meals with long periods in between results in pain. Keeping a small but constant flow of food moving through the system is the way forward. Out go the dinner plates, in come the tea plates. It will mean a change of habit but not one that is necessarily negative, I quite like eating this way anyway.
3. Avoid aggravating foods
I’ll be avoiding the foods that aggravate the crohns; cream, garlic, thai spices, anything very rich or very sweet.
4. Include more ‘safe’ foods
On the flip side I will increase foods that seem to keep things calm. Soft and fluid foods like porridge, cottage pie, and soup will feature more. Also, rice, cous cous, chicken and pork.
I don’t know what the future holds in terms of surgery and the state of my health and that can be quite frightening. I’m trying to regain control by taking action to manage the illness and slow it down as best I can.