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?

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?

One ticket to rantsville please.

I’ve been trawling the internet for the past few weeks for blogs about FODMAP or any information about colitis/Jpouch being helped along by change of diet.

I have found some amazing blogs detailing the diet, a few go as far to post a few recipes, which is amazing but then, out of the blue, all the posts stop. 
Where have the wondrous bloggers disappeared to? Was it just to difficult to re wire your brain from wheat/dairy to quinoa/rice milk? (I have yet to have quinoa but have heard it taste like bum. However rice milk, I can tell you from experience, tastes like bum. Not that I’ve tasted bum, so technically this whole point is redundant. On the other hand saying “it tastes bad” just doesn’t have the quality I’m looking for. Right. Moving on.)
In fact this whole post is just to tell you all how frustrating it is about the lack of information there is about seeing this diet through. 
There is plenty of information about the diet, what it stands for, what you can’t have, what you can have yada yada yada but what about information about a recipe that actually tastes good. And to the point isn’t ridiculously expensive? 
The health food store in all its hippie glory is so expensive! I went in there to buy some peanut butter that wasn’t loaded with sugar and nearly cried. FOUR POUNDS? For a tiny jar something that is meant to be good for me that I can stick on my rice cakes so it doesn’t taste like bum? There’s the bum again. 
I wish I could meet a chef and we can set up a little fodmap cafe for all the people out there with dietary issues, because as amazing as the gluten, wheat free places are, what about those of us who can’t have onion or garlic? 
Why are we reduced to a stinky salad, which by the way I can’t even eat too much because too many leafy greens go straight through me and I end up sitting on the toilet perfecting my French braid technique.
I can only hope that  this diet thing will get easier because right now its like smacking my head against a brick wall. 
Till then, I shall bid you all adieu and grudgingly eat my buckwheat flakes with rice milk. 

The cake is watching me

When I was given the hefty list of foods that I was not allowed on the fodmap diet, my first thoughts were “Oh my God no bread,” followed by “Oh my God no cake.”
I do enjoy a slice of cake. It is a common pass time of mine to catch up with a friend over a piece of cake and a cup of tea.
Sometimes I wonder why I am not the size of a house, and then I realise that it’s because I poo everything out at an alarming rate. Did you know that for a normal person 
Being on this diet I have found out many things. Mainly, how utterly appalling my self control is.
I know I’m not meant to have that piece of cake. That glorious piece of cake that is staring me down singing “you know you want me” and dancing in a seductive way with a fork, is on the “Not allowed list” It has wheat, and most importantly an epic amount of sugar in it.
Yet I am there, five minutes later, feeling guilty that I shoved that piece of cake into my mouth and I damn well enjoyed it.
However my J Pouch is not impressed. I have learnt the hard way that on top of the fodmap diet no no’s, sugar is out.
I always thought that wheat would be my biggest problem to cut but in fact its sugar. It is everywhere and I never realised I how much I had until I tried to cut it out.
It’s everywhere and trying to exclude it is so hard. So far I have only managed 4 days tops to exclude it and then I cave.
I managed to last nearly 2 weeks without wheat and all the other crazy no no’s and I got really upset and everything went out the window.
Being on the fodmap diet I have learnt that if I want to eat I have to take lunch with me. There are very limited foods I can pick up on the go and in a rush.
Even though I know that this diet is what could be the key from keeping me off antibiotics I am finding it difficult to stick to it. Having UC, the ops and now all the problems with the J Pouch, I have adopted the Fuck It mentality. I have missed out on so much and my illness prevents me from doing so many things that I do end up eating things that I shouldn’t. Why can’t I eat that piece of cake? UC has robbed me of so many things so why can’t I eat the cake just like everyone else.
I have been doing a lot of research recently regarding diet and Jpouch and have found some interesting information regarding UC and diet.
When I was diagnosed one of the first things I asked was “Should I change my diet?” I was told that I should be fine, and that when I am in remission that I can eat what I want and to just “listen to my body” when I am in a flare and not eat too many fruits and vegetables.
IBD takes the “one size fits all” and stamps all over it. It’s different for so many people; no wonder the doctors don’t recommend you start cutting certain foods out because what will flare me won’t flare you.
I wish they had recommend trying different diets, or at least planted the seed of researching different foods that could aggravate my UC. Especially now I am having the same symptoms I had with my UC except without an intestine.  
I hope that the gastroenterologists are starting to seek alternatives, to realise that though it is completely necessary to control the flare, that there could be an underlying problem that diet could help to address.
I hope that people with IBD see this blog and decide to do some research on what works for them. Sometimes doctors are so focused on getting the flare under control they don’t consider any other alternatives than those dreaded steroids, when a few changes in diet could relieve a lot of pain that some of us IBD sufferers have.
In the mean time I’m going to try harder to stick to this diet. What’s the point of preaching to everyone if I don’t heed my own advice?!
So Mr Cake, you and I will cross paths occasionally, I only ask that you stop doing that sexy dance with the fork because it makes me want you just that little bit more!

Diet

A few posts ago I said that I would be embarking on a new diet called FODMAP. This is to reduce the symptoms of IBS that comes with having IBD.
I was under no pretence that this would “cure” me of the issues I have been having with my Pouchitis. However I need to try different things in attempt to try and live medication free.
I have not managed to complete more than a week of this diet.
This is partly due to my seriously lack of will. It amazes me that I am strong enough to go through what I have, but stick chocolate/tasty bread/cakes in front of me and I cave; crying whilst I eat what is on the dreaded NOT ALLOWED list.
It’s also partly due to sneaky fodmaps lurking in foods that I wouldn’t have thought it to be in.
From previous experience I am aware that my pouch is in love with marshmellows. For some reason, perhaps the gelatine, it slows down transit quite nicely.
Wanting a sweet treat I picked up a rice crispie square. My pouch also loves rice crispies, so I thought it was a win win situation here.
Wrong.
Tucking into the amazingness that is the rice crispie square I decide to glance at the ingredients.
And there, glinting at me in its wickedness was the word Fructose.
Aye?!
What is fructose doing in my rice crispie square?
Other more obvious and yet annoying ones are onion and garlic powder that pop up in all soups/stocks.
I can’t eat out at most places because the majority of sauces will have onion and garlic in the base.
Burger places are excellent, providing the meat hasn’t got onion or garlic, as I can eat the burger and a side salad. Ha who am I kidding, chips. I was trying to take the moral high ground there and pretend that I eat salad with my burgers. I always go for chips, and if I don’t I’ll stare hungrily at yours like a dog until you ask me if I want one.  
Eating out limits me to plain rice, salads, without the offending cous cous, and wedges.
Lunch has to be prepared in advance or I will have to succumb to something containing fodmaps as there are no quick fixes in the “lunch-on-the-go” department.
Snacks are rice cakes with peanut butter, which are amazing but I am not entirely sure whether my pouch likes peanut butter, or even rice cakes for that matter!
I am deeply confused as to what is setting my pouch off and what isn’t.
As a result of this I have decided to cut back to epic proportions and am living on rice, chicken, potatoes and porridge, providing the milk is lacto free. I have only started this and it is going to be so hard I might cry a little bit.
I dislike eating the same thing day in, day out but for me to figure out what is bad for me I need to first stick to what I know is good so I can pinpoint what is aggravating my pouch.
They do say that it can take 24 months for the pouch to settle down completely, and considering I am only 8 months down, it still has a while to sort itself out. I have read of people’s pouches only settling down after 9months, sometimes a year. Perhaps mine is a slow starter.
Saying that maybe my pouch is just angry. He’s annoyed that he now has to do more than his job description and is making me pay for it. If my intestine had a fist he’d be shaking that bad boy vigorously.
Or giving me the middle finger.