4TH DECEMBER – MAKING PLANS
My life this last year has consisted of many, many hospital appointments – whether they be planned or emergency. There has also, unfortunately, been a few too many admissions as well for my liking. So for me, it’s important to have stuff to look forward to.
I’ve always liked having plans for funs tuff in the future, but this last year where my confidence and mental health have taken a battering it is even more important to me. It helps me see that if I’m having a bad day, it’s just a and day and that there are better things in the future to look forward to.
On my phone I’ve got an app that has a countdown to certain events I’ve got coming up. At the moment there are holidays, concerts and hospital appointments. Even on here I’ve got a countdown that I’m constantly updating when I’ve got something new to add to it or cross off.
Another reason I like having plans is because making plans makes me want to be better, and healthier to enjoy them. I’m not going to lie, some days are tough. Some days all I want to do is cry and wallow in self pity. Some days that’s actually all I do. But then something clicks and I realise that if I allow myself to do that then I’ll never be able enjoy life to the full, which is stupid considering I’m lucky to be here and should be making the most of every opportunity given to me.
5TH DECEMBER – DIET RESTRICTION
I have to stick to a fairly strict “white diet” at the moment due to the adhesions and kinks in my small bowel not liking anything that is hard to digest. However, even without these adhesions I would still be on a strict low fibre diet due to my ileostomy.
Many people with IBD have changed their diet in order to keep themselves in remission, unfortunately that’s just something this disease comes with. But there are ways to get around it.
Personally, I cannot tolerate caffeine. Before I was diagnosed, even a year before the really bad symptoms started, I was having bad stomach cramps and bloating. I’d just started working at Costa and put it down to the fact that I was drinking coffee which I had never usually been a fan of, so I started drinking decaf and I noticed I wasn’t bloated and I didn’t have the cramps anymore.
When I’d had my surgery I was so excited to be able to drink coffee again because in theory, the diseased part of me was removed so I should be okay. And I was, for a while. Until early summer this year when I started getting crippling pains, which I now know are a result of adhesions and kinks in my bowel making it hard for food and drink to pass through.
To save myself from these pains after every time I eat, I now don’t drink coffee, at all, ever. Strange for a barista but it’s better than the alternative of being sent home from work in pain with not even morphine being able to help!
I also tend to stick to “white” foods as they’re lower in fibre which is what most people with an ileostomy need to stick to. So unfortunately, I am that person that picks lots out my food when we go out for dinner. Like my chorizo nachos for example (left). They came covered in onion and sweetcorn so my bowl was left looking like this at the end of my meal.
Many people think this literally means if it isn’t white then I won’t eat it. All it means is that I avoid foods which are harder to digest, such as wholegrains, granary, fruit and veg. It doesn’t literally mean if it isn’t white then I won’t eat it. So next time you see me waiting a brownie instead of a bag of white crisps, just leave me be! Because the fibre content in the crisps will actually do me more harm than the brownie I’m trying to enjoy…
6TH DECEMBER – HOME COMFORTS
Everybody likes to feel cozy when they’re feeling rubbish and I am no different.
Recently, I’ve been really struggling with the flare in my rectal stump and my bags leaking so I don’t feel like I’ve really been “myself.”
My evenings generally consist of coming home from work, having food, turning my electric blanket on, organising my many pillows to make myself a nest, taking some painkillers, and praying that my body lets me sleep through the night. Most of the time, I wake up at 3am with the urge to go to the toilet, which I can sometimes ignore, but sometimes it’s too much and I spend who knows how long glued to the toilet. It’s annoying to say the least, and the broken sleep doesn’t help the fatigue either.
Along with the pillows, electric blankets and heat pads, I also try to have some sort of drink on my bed side unit because this dreaded cough has made a return yet again. I’m also aware I’m not drinking as much as I probably should be during the day and I don’t want to end up in hospital because of dehydration again.