Journey of food

I remember talking to be gastroenterologist when I was first diagnosed and asking him whether diet played an important part in my IBD.

He said that when I was well I shouldn’t have a problem eating everything but when I was flaring to keep an eye out on what affected me and to stay clear of it.

I had asked if there was a specific diet I should follow and he said that because everyone is so different it’s hard to say what I should do, just that I should avoid things that were high in fibre and to maybe keep a food diary to see what my triggers were.

When it comes to the diet aspect of IBD I think health practitioners, and patients, can get a little confused. IBD affects us all so differently so there is no “one size fits all” approach, which can prove tricky.

It’s about finding out what affects you personally, and that can change over the years, I know that from personal experience.

Some people can change their diet and are lucky enough to alleviate some of their symptoms if not completely get rid of them. Some people have tried everything known to man on the diet scale and it has done nothing to help them. Same for different supplements, but I’ll tackle that another time.

I hate giving advice about diets and IBD, and on this blog I try to stay away from saying “You should try this” because to be honest, though we have the same disease, it attacks our bodies in different ways.

The only thing I can do is share my own experiences.

In the beginning I stayed away from a lot of dairy, nuts, caffeine, veggies that were hard to break down and hot sauce, which killed me because I LOVE spicy food.

I once had a particularly bad episode with popcorn so stayed cleared of that for quite some time.

Once I had my stoma, I pretty much ate whatever I wanted and had no problems. Sure if I ate something particularly bad it would go through my system quicker but I never bled. Apples were a big no no. I just couldn’t seem to digest them. If I ate something fatty then it would go through super quick but TinTin seemed to like pizza, noodles, pasta, bread, basically anything quite stodgy. And strangely enough, a Big Mac and chips. God know what they put in that burger but TinTin loved it. I could even drink when I had TinTin. Not cider though, always had problems with cider and wine could make it pass through quickly but if I took loperamide before I went out and before I went to sleep I wouldn’t tend to have many problems.

Apart from the time I got REALLY drunk and leaked in my bed but that was most probably the after-drink kebab that set that one off!

It was only once I had my Jpouch that I really started to look into my diet because my Jpouch unfortunately just wasn’t working. I was going to the toilet loads, I was bleeding and the gas that I had was unreal. Not in a “oh my god I can’t stop farting” kind of way, because I can’t actually do that unless I’m on the toilet. So if we’re in a group and there’s a bad smell, you can’t put the “Ew Stephanie Farted” line on me because I can’t.

The gas was in a “oh sweet Jesus this pain feels like there are giant, hot, balls rolling around my tummy” and they’d gurgle away and get more frequent and urgent until I went to the toilet.

So I looked into diet in an attempt to calm it down.

I have found that not eating wheat has helped tremendously with my bleeding, and sugar. Sugar is actually evil for my pouch but damn I can’t help but have some sweets or chocolate now and again.

It’s defiantly settled over the months. In June it will be two months since I had my pouch connected and I can eat a lot more than what I could in the early stages.

I went a year without ice cream, the combination of sugar and dairy was just death. Yes, death. I’d eat it and be locked in the bathroom for about a day. Totally not worth it, but I can occasionally have ice cream now which is awesome. Do you know how hard it is to be in Australia in summer and not have ice cream? It’s pretty impossible.

I couldn’t eat eggs for a while, but that’s better these days too. I just can’t have eggs every day. It’s almost like I can eat something once and then I need to let my intestine cope with it and then I can have it a few days later. I can’t overload it, it seems.

I tried different diets too. The FODMAP diet and the Paleo diet. I’ll explain these diets in a different post so that you have more of an understanding in case you ever wanted to try it, but I found that though they were helpful, listening and finding out what affects my body helped the most.

So what kinds of things to I eat now?

Well my breakfast is usually oats with a few raisins, almond milk and cinnamon.

Lunch is rice noodles or if I’m out and about sushi with no soy sauce, because soy sauce contains wheat.

Dinner can be loads of things, gluten free pasta tomato sauce, with chicken and some veggies, or what really sits well with me is chicken breast, mashed potato and broccoli.

I would be lost without rice cakes, great snack! And I put a small amount of peanut butter on them or butter and marmite.

I do still have sweet things, and occasionally, though I shouldn’t, wheat. I don’t have them all the time because I know that if I do, I’ll be in pain, going to the toilet heaps, bleeding and it’s not worth it.

If I’m honest, I do eat more sweet things than I should but we all have our battles and it’s still something I’m trying to overcome!

What are your diet staples? Have you found any diets to be really helpful for you or do diets not help in anyway?

FOMO

In my previous post I spoke about how I had a car crash and I didn’t want to tell anyone because I was embarrassed.

Note that the moment I got my car I took a picture and posted it to Instagram and Facebook.

It got me thinking about social networking and what we choose to share.

Obviously no one wants to share when something terrible happens, but surely those experiences too, are what help us grow?

Which is why you should always, always be careful about what you see on other peoples pages. Remember that they’re only showing the best parts, the edited version of their life.

It’s taken me a long time to realise that, after all I did spend a lot of my time when I was recovering from my ops staring longingly at peoples Facebooks and wishing that I was out doing all the fun things that they were.

But how do I know that they were having the time of their life? That one picture that they posted could have been the only time that night that they smiled, it just happened to be caught on camera. How do I not know that they could have spent the whole evening wishing that they were in their pj’s with a cup of tea like I was at the time?

You never really know what’s going on in peoples lives unless they tell you so if you’re reading this and you’ve had an op or two and currently holed up, wishing that you were out and about, remember that its only temporary and you don’t quite know the whole story.

Having IBD also comes with FOMO. Fear Of Missing Out. I would push myself to extremes just to go out with everyone else, just to feel “normal” but generally, I’d push myself and then be set back a week or two because I was so exhausted.

My body craved for sleep and rest but I just wanted to be out doing all the things that “normal” people do. I was 19 when I was diagnosed and as I have always said, I won’t let this disease hold me back. Sometimes though, you need to recognise when to fight a losing battle.

Taking time out to rest doesn’t mean that the disease is winning. It just means that you’re resting up and being the best that you can be at that moment. Rest now, and who knows, maybe your flare might not last so long because your body is in a better position to deal with it.

I know its tough but don’t let things like social media or your mind convince you you’re missing out on life because chances are you’re not missing out on much.

Sure, a lot of your friends are out getting smashed but its what they did the week before and the week before that just spending money on a night they won’t remember and a kebab they’ll sorely regret in the morning.

Just a note, generally speaking I never regret the kebab, the after party kebab is one of my highlights of the evening.

See!! Shouldn’t that tell you how much you’re not missing out on if one of my favourite parts of the night is a kebab?!?!

Diet issues

Living in London Town, there were all kinds of foods that I couldn’t eat without having painful tummy rumbles. I can’t list them because there are so many but just to get an idea, most fruit and veg was out, caffeine, anything sweet and wheat. At one point I’m sure I was living off rice, tuna, rice, tuna and erm rice and tuna.

Food plays such an important role in my life these days and my relationship with food is a tricky one. I used to HATE eating because food is so complex for me. I went through many a phase where I was like “SCREW YOU J POUCH” and ate what I wanted.

This never, ever has a good outcome. I’ll be fine for a few days, albeit my tummy rumbles were in full force with everything I ate, but the pouch eventually would win. I’d feel run down, exhausted, I would have been bleeding heavily and I’d be feeling very dizzy because I would have been going to the bathroom heaps, therefore losing salts and electrolytes and feeling pretty dehydrated.

Now I know what you’re thinking, if I know it’s going to be so detrimental to my health why am I eating it?

Sometimes I just want to feel normal, and I miss the convenience of eating anything I want. I miss going for lunch and grabbing a sandwich rather than having to plan all my meals beforehand. I miss going to dinner and not having to make a fuss about what I can or can’t have. I miss going to a friend’s house and not have to give them a list of what I can or can’t eat.

What I miss the most? Easy food shopping. I now lose precious hours of my life in the supermarket. I detest food shopping because I have to check everything. Did you know that there is wheat in soy sauce? Neither did I.

There is no way I can go into a supermarket and spontaneously think of what I would like for dinner. I am so envious of all the people who are going through the aisles, they see something they quite like and it goes in the basket. I’m sure I’ve disturbed some people by looking at them with such green eyed jealousy, that they have cautiously backed away slowly, not making any fast movements for fear that I might pounce on them, or God forbid, strike a conversation with them.

Food shopping is a mission for me, I have to plan my food shops and if I don’t? Oh boy. I’ve gone into the supermarket once for a weekly shop and ended up leaving with some chicken and potatoes. That’s it! The thought of traipsing through the aisles without a list became so daunting I just picked up my “safe foods” and left.

I’ve even gone in once for a snack and left because the task was just too overwhelming/daunting.

So how do I cope these days? Well since coming to Australia and taking some amazing supplements, having a lot more sunshine and in general being more relaxed, there are a few more things that I can tolerate which makes shopping easier. Imagine my disbelief when I found I could finally eat broccoli and cauliflower without feeling like I was trying to pass eggs through my intestines.  I literally cried into my food when I found I could eat spinach again, in small doses mind you, don’t want to over do it.

Lists and pre planning. These are my best friends when it comes to food shopping and meals. Going to a restaurant with friends? Check out the menu or call ahead to see what you can eat.

Yes, it is a pain in the backside, yes it takes the fun out of food but with the glorious thing called the internet it doesn’t mean that your meals have to be boring!

If you’re strapped for time, take a day to cook your food for the week so you can just heat it up when you don’t have the time to cook from scratch. When making certain foods, make them in a big batch so you can freeze a portion or two and heat it up another day.

It does take time and effort to plan all your meals but it is worth it. Also I found when I was being really good and sticking to my diet, I found that in the long run I could tolerate more foods because clearly my intestines were healing.

As it stands, I’m on the brink of a flare because I’ve been stressed and not sticking to my diet, which is completely backwards because I know that when I am stressed I need to stick to it even more. I’m lucky though because I can recognise when things are getting bad and tighten the reigns so I don’t flare completely.

I know it seems hard but it is worth it in the end!

What are your diets like? How do you cope with food?

Tips for a festival

As I’ve been away for a long time, I need to fill you in on a few adventures that I have had, first things first, a festival.

In August, I went to Reading festival. I won’t lie, I was feeling very apprehensive about this but I really wanted to go.

There were so many things that could go wrong.

What if I have to camp far away and I can’t get to toilets in the middle of the night?

What if the toilets are so disgusting I can’t use them?

What if I have to poo in a bush/bucket?

What if I have an accident in my tent because I got drunk, passed out, and couldn’t wake to use the bathroom.

What if, what if, what if?

Emailing the organisers of the event, I found that because of my need of the toilet urgently, and the fact I use it so frequently, I was actually entitled to use the disabled part of the campsite.

The relief was insane. The fact that I could get access to close toilets, not only on the campsite, but in the arena as well, was such a weight off my shoulders.

I packed a RIDICULOUS amount of toilet roll, enough for a small family. Could you imagine being in a stinky portaloo, your busting, about to poo yourself and you have no toilet roll?

None to put on the seat, and none to wipe your bum.

The thought actually brings me out in a cold sweat.

Baby wipes and antibacterial gel are your best friends. Pack plenty.

Loperamide. I took so many tablets I only had to get up once in the night. On the other side I did have a bit of a bloated tummy but its better than having some kind of accident!

Water. Drink lots of water but do try to bring dioralyte with you if you’re feeling a little dehydrated.

I forgot to bring any but luckily they had an onsite pharmacy which I could buy some from. It was very expensive so bring some with you.

Paper towels for your bum. I didn’t want to sit on the seats so I would give it a wipe and put paper towels down. They’re a little thicker than toilet roll so I felt a little more comfortable parking my bum on the seat.

Food. Now I am still trying to avoid wheat where possible but it was quite difficult at the festival.

The first night we had a barbeque which meant I could limit the wheat intake, but after that it was quite tricky as wheat is everywhere. If you do have dietary requirements, have a browse of what you could pack with you that won’t spoil over the few days.

Or you can risk it, like me. It wasn’t too bad, but by the last day I was starting to feel it a little bit.

Enjoy yourself. I was a little bit worried about going to the festival, a little too worried about all the possibilities of what could go wrong, so I was a little tense. Have fun and enjoy the experience.

I would definitely go to another festival. If I could offer any more advice it would be to watch out for long periods of time on your feet. If you’re prone to dizzy spells and getting hot easily, like yours truly, just take 15 minutes out to have a bit of a sit and some water, and I am sure you’ll be fine.

Listen to your body, it will tell you if you’re pushing it a little too hard!