Crohn’s and Junk Food

Because of today’s news story about Crohn’s on BBC Breakfast and Radio 1’s Newsbeat, alot of people with Crohn’s and IBD are feeling hard done by, attacked even. And all because some simple facts were said. Junk food legitimately COULD be a cause behind Crohn’s or IBD. But it’s only ONE of the possible causes. I understand why people have got a bit angry, but it can be rectified. But honestly, I think there’s some truth behind it. And I sent an email to Newsbeat detailing reasons why, because of my personal experience, but that’s just it, Crohn’s and IBD is a VERY individual thing. For instance, many with the disease have chronic diarrhoea. I never did until last year when my symptoms got super bad.

Anyway, the following is my email to the BBC, and basically my entire story with Crohn’s up until now.

I’m 24, and I was diagnosed in 2007 when I was 17, stressing over exams and working in McDonald’s(and eating the free meals during my break, junk food maybe?). The doctor first thought I just had anemia, due to tiredness and stuff, but after a few blood tests and a colonoscopy(fun!), it was deduced I had Crohn’s. The doctors were actually surprised I’d been diagnosed so fast. Which was kind of worrying…

My symptoms were mostly the cramping/pain, fatigue and weight loss at first. I was put on drugs to control it and I was fine for years. In 2010 there was a slight hiccup but nothing major.

Then in 2011 I decided I was going to work in China, (always wanted to go) and in January 2012 I went, with only 3 months worth of drugs. I could have got more, but it would have been complicated, so I decided to see how I went, and miraculously, I was fine! No tiredness, no pain(unless I ate the wrong things, which happen to be mostly vegetables), no issues whatsoever! I was living fine, eating spicy food, fried noodles/rice, meat buns, whatever, I had no problems. I think in the last couple of weeks before I came back in 2013 stress about coming home was causing a bit of pain, but it wasn’t till I actually got home till everything went downhill.

It was slow at first, but the pain came back, lack of energy, and then the weight loss began, along with vomiting and even some diarrhoea, which I had never suffered from before! I weighed about 80kg when I came back from China, and now I weigh 55kg, on a good day. I ended up being admitted to hospital in August for 2 weeks, then again in November for 2 weeks, completely screwing up my plans to find a job in Birmingham.

I was admitted again at the end of December, right after my birthday and christmas, I really didn’t want to be in over christmas, but I probably should have been.. I ended up staying in hospital for over 4 months… from the 27th of December to the 5th of May.
It was decided by my doctors and surgeon that I needed surgery, as the drugs weren’t working any more. And I couldn’t eat anything either, just threw everything up, so I had to be fed by a tube into my arm, they tried tubes down my throat but I always threw them up.
Surgery was planned for the beginning of March, I thought it would all go fine. Sadly not the case for me. I ended up with septicaemia, not once, but twice. Ended up with drainage tubes for the liquid gathered in my stomach, experienced the worst pain I have ever experienced and finally had a second surgery to correct the first, septicaemia again, I was completely out of it for a week or so, I remember nothing from the time I had the second and THIRD surgeries. I ended up with a jejunostomy and a stoma bag. Woke up in intensive care, still fairly groggy. It’s honestly painful to remember how bad I was, I had a gaping open wound because they couldn’t close it after the 3rd time, had to leave it heal on it’s own. Makes me actually want to cry.
Spent another month in hospital slowly recovering, getting strong enough till I’d actually be allowed home. And getting used to my stoma. Who I haven’t named, like alot of people do, I just swear at it profusely when it misbehaves while I’m changing it usually. On the upside, my stoma is only temporary hopefully, and it should be getting reversed in July, if all is well. Then I might be able to get back to real life.

I’d never made a big deal over my Crohn’s. Because I’d never had any big problems with it until recently. But right now I’m stuck at home with my parents in Norfolk, not really allowed out on my own even. I know they’re just worried, and with good reason, I was in trouble for a bit I know, on breathing tubes and god knows what else(was totally unaware of alot of this, I remember waking up for a bit and thinking I was in a hotel in London though XD).

So. Yeah. Thought you might liked to know, since I went to China, was fine, came back, all hell let loose. And I know for a fact the cases of stuff like Crohn’s have increased in China along with the presence of fast food like KFC and Mcdonalds, hell, they were crazy for Pizza Hut while I was there, but I think Japan is big on pizza too… either way. Seems like too much of a coincidence doesn’t it?

So make of this what you will. I for one am not too horrified or saddened by the junk food swing, cos I believe there could be some truth it in. For the reasons in the email above.

Laters peoples!

No Ramen?!

I’m basically not allowed to eat ramen right now…. cos it’s food and liquid… and I can’t eat and drink at the same time DX So no noodle soups for me…. no hotpot… which sucks… cos I love ramen… but hopefully it won’t be for much longer…

Also… I kind of have no belly button..

My Super Foods: Rice

Click the link to go to a page about sticky thai rice, from top left clockwise, it’s sticky thai rice, Japanese short grain, and then thai jasmine rice. I prefer short grain rices.

It may seem like an obvious boring one, but rice really is brilliant. And on it’s own, simple. Simple enough for stomachs and guts which are recovering it seems. And it’s so versatile in it’s uses. Think of how many dishes rice is used in. You have your basic currys, chilli’s, your fried rice, rice pudding, it’s used to make cereal even! You can have it with stir fries, you can put it in omelette’s,  you can even make it into soup. And fill it with meat and wrap it with leaves. It’s seriously brilliant. And sushi! How do I forget to mention sushi?

How much is too much?

Looks a little dry compared to the one I mashed up, but this looks like it lacks butter…

So I’m testing out how much I can eat without making myself physically sick. And what things I can eat right now while on TPN. Since I don’t actually need to eat. I could just… not. I could just drink. But I can’t not eat… I like eating. It’s yummy. So last night I decided to try a baked potato. Potato didn’t bother me before anyways.

The Eighth Day – The End of Elemental 028

So I threw up the 3 Elemental 028’s I drank from 9am to 2pm-ish. Not sure if I drank them too quick or if soluable paracetamol would have reacted with it. But either way, they weren’t sitting well regardless and drinking 8 a day just to maintain my current weight… which is underweight anyway, was ridiculous. At 250ml each. My only two options now are either going back on Fresubin and getting 6 down a day, or an NG tube. Which I’d much rather avoid to be honest…

The Sixth Day… of No Food – Torturous delicious smells…

I smell roast potato’s… and gravy… and meat… I can smell everything…

I’m on the 6th day of no food. On the Elemental 028 Extra liquid diet. And it’s roast day on the ward… so all I smell is deliciousness… Technically it was Modulen I started on Tuesday, but that didn’t agree with me, so after 2 and a half days of that they decided to try me on the Elemental 028 Extra stuff. Which has settled day, after the first day of normal food pains after just two 250ml cartons… how liquid can cause the same amount of pain as solid food I don’t know. But it did. But the next day I kept on, managed 3 cartons through the day, 2 of which were watered down and some suggested. Seemed to help. Unlike the dietitian’s and doctor’s instructions, you’re not meant to go right onto the full 7-8 cartons a day, you’re meant to build up to that over a week. So why the hell they were trying to force feed me that much right away I don’t know. Probably because I’ve lost so much weight and haven’t gained anything since coming into hospital… but really… you’d think their medical knowledge would extend that far. Even the nurses seemed shocked at the number I was told I had to drink… They all feel sorry for me, as do the staff who come round asking what people want for breakfast/lunch/dinner. They’ve learned to avoid me… and just give me sad looks instead…

Modulen – Milk of the Demon Spawn

So 3 days ago I was put on Modulen to see if that’d help settle my bowels, and since it’s made specifically for IBD patients I thought it’d be good. Alas, didn’t go as I’d hoped.

Crumpet Cravings, Garlic Pizza Muffins + more

Too underdone for my liking, but it’s all personal taste.

Earlier on today I had a huuuge craving for crumpets, alas because of whatever happened yesterday, liquids only, and tomorrow… effin Fresubin…

Crumpets don’t seem to bother me at least. Just toasted with a bit of butter on, not too much mind you, too much fat=bad thing. Usually with crumpets I’d slightly over toast them, since undertoasted is no good. So they might be a little crispier on the outside than some would like :3 Like this.

(Though I’d make sure all the butter was spread into the crumpet, I don’t like getting a mouthful of butter on stuff like toast. My dad prefers that though o_o;)

Drowning a crumpet in melted butter so that when you squish it down it leaks butter is just brilliant, but can’t right now XD. Muffins are also tempting as hell right now…

This was the closest thing to what I made I could find, since most results came up as actual muffins, not English muffins lol. Only difference is the sauce base and kind of meat, though it looks like ham anyway, pepperoni would have been my topping of choice too. Ham and pepperoni. Even better. I did add more cheese than that though… maybe a little too much in retrospect…

English muffins seem to be too stodgy for me at the moment, they fill me up more, I suppose they don’t have all the holes that crumpets do after all. But an English muffin, with some butter and/or whatever toppings you like, quick snack. Works nicely. I made mini garlic pizza muffins(like the ones you might have made in Food Tech class in early high school lol) under the grill a few weeks ago in fact, since tomato isn’t always a good thing, though tomato sauce from a squeezy bottle seems fine. Even puree I think. (Guidelines for making Garlic Pizza Muffin’s below the cut :3)

To trim the fat, or not trim the fat

So bacon with too much fat on is apparently a very bad idea. I can’t think what else messed up today, so it must have been the bacon muffin I had after my gastro appointment(will elaborate later). But it seemed to just sit in my stomach all day till I hurled in the evening. Tmi I know, but most folks with Crohn’s and IBD have to get used to talking about bodily functions, so it’s probably not that shocking.

I know some things I’ve read have said that fat in general is harder to digest, and therefore bad for Crohn’s. Which I’ll go with, since processed hot dogs and stuff like that seem to bother me, during a flare up anyway. Even though I ate canned/jars of hot dogs loads before. And beans… I miss baked beans… but right now thinking of food isn’t what I wanna do. But there are good fats we need too right? Either way, I went from feeling meh, to feeling seriously bleh… literally.

Distractions

Is it all in our heads? Some people seem to think Crohn’s and IBD related diseases can also be psychosomatic, which in layman’s terms basically means stress and stuff can affect us in a very very bad way, more than people without IBD. Our guts might be attuned to our mental well being even more so than people who get butterflies in their stomach when worried, or get stomach aches when they’re stressed out. Folks like us with Crohn’s and IBD would react… worse… in theory. Again. Theory. Because there is still so much to be learned about Crohn’s and IBD, alot of it’s still theory, and heck, they’re not even sure what causes it yet…

So I figure, distractions are key. Keeping your mind OFF THE CROHN’S. When I was first diagnosed, I think I was probably revising/studying for exams and stuff, I know I missed an exam because of symptoms and had to do it later on. So that would align with the stress/mental health theory.