Hi, newbie here, I'm Emily & I was diagnosed with Crohn's in 2007

[Emmy]

Hi there, name’s Emily, I'm 23, 24 in like... 12 days...D:, and you can call me Em or whatever. I love gaming, TV, movies, Japan, China, Korea, Asia in general really. Dr Who, Lost, geeky stuff like that :3 Currently playing Pokemon, Animal Crossing New Leaf and the demo of Bravely Default, which I'm loving. Currently watching Almost Human, Once Upon a Time, Grey's Anatomy, HIMYM, New Girl, Sleepy Hollow, Masters of Sex and god knows how much else XD
I was diagnosed with Crohn’s Disease in 2007, I’ve had a fairly lucky time until this year for the most of it compared to alot of horror stories I've read, Azathioprine controlled it and went on prednisolone whenever I flared up. Which wasn't too often, unless I'm deciding to blank it from my memory.... When I was 17 I got all fatigued and lethargic, had stomach pains and loss of appetite. Doctor's thought it was a simple case of anemia, so put me on iron tablets, but blood tests revealed I wasn't absorbing the iron properly, so we ended up going to a private gastro doctor, and not long after I was diagnosed, it must have been about 6 months between the start of the symptoms and diagnosis I think. Which I'm told is surprisingly quick for a Crohn's disease diagnosis...
Currently I'm taking 150mg of Azathioprine and a decreasing dose of Prednisolone(nearly at 20mg, 4 more weeks :woop, because I was in hospital for a flare up a few weeks ago, and then on a Fresubin milkshake diet, which just made me bloated and gurgly as all hell. Paracetamol doesn't seem to work for me, and Codeine makes me throw up, so I have little pain relief when the gurgles and bubbles get going after I eat/drink etc.
I’ve been on IV steroids the times I’ve been hospitalised(total 3 so far), tablet steroids, azathioprine, mezo-something or other, Humira(Adalimumab). Recently I’ve tried cutting certain foods, tried dairy free, gluten free, nothing seemed to help with the insanely loud gurgles my stomach does whenever I eat now. Hot water bottles seem to calm the gurgles a little, and pain. I tried herbal tea’s too. Haven’t really tried many treatments or diets as such, apart from low fibre and low residue, easy to digest things.


Before this year, forgetting I had it most of the time made it easier. But right now, with all the problems it’s causing(weight loss, muscle loss, the inability to keep food down, pain, energy loss, slight depression I spose etc etc) it makes it kind of hard to forget. So right now, distractions are key. Keeping my mind off it. Keeping busy is key. That might be why it didn’t bother me so much in China.
Because I spent 16 months in China, 12 of those without Azathioprine, and I was pretty much fine the entire time. Just the occasional niggle when I ate the wrong thing, like pizza or fast food. Eating all the fried noodles and meat buns and pancakes and dumplings I wanted had no effect. Spicy food maybe a little, but even then, nothing to cause me mass pain and discomfort like right now. Maybe it's all in my head. Maybe because in China I was living a pretty carefree existence, where I didn't worry about money, didn't even work *that* many hours, got to go out and have fun. I came back to England in May and I got almost an instant flare up, I think it was starting to flare the last week I was in China actually... In England, I have to worry about money and work. I know some people think Crohn's is part psychosomatic, which I can see being accurate. But it's so different for every person how can we really know...

Sorry for going on so long... Cliff notes of that humongous essay.

• I'm Emly, 23, diagnosed with Crohn's in 2007
• I'm currently taking 150mg of Azathioprine and 25mg of Prednisolone + 1 Lanzoprazole in the morning
• When I was being diagnosed they thought I had anemia
• I spent a year in China without meds and was FINE. What's the deal???
• I think worrying causes problems with my Crohn's...
• This year has been the worst so far for flare ups, been hospitalised twice.
• Weighed 84kg when I came back from China in May, 75kg in July, 1st hospitalisation of the year, and 65kg in November, 2nd hospitalisation.
• Currently trying to gain weight back on, but it's kind of hard when you can only eat tiny portions...
• And I need a stupid amount of protein. And I have barely any energy for anything to excercise etc...
• Also I love Pokemon and have spent 125+ hours on X, since getting it in November. Finally XD
• (I'm a massive geek btw)

 

[GIGI69]

I just returned from China, and really enjoyed my experience. Welcome to the group.

 

[Cat-a-Tonic]

Hi Emmy, welcome to the forum. I also love Asia and am trying to teach myself Korean! As for why you felt better in China - diet & environmental factors seem to play a pretty big role as far as symptoms & flares go. It sounds like you were eating a fairly standard Chinese diet? There's not a lot of solid research on it yet, but from what I've read, people who eat a "Western" diet (fast food etc) tend to get IBD in greater numbers than people who eat healthier like mediterranean or Asian diets. So your diet could have played a big role, but it also could have been a number of things all contributing together (were you getting more exercise in China? Were you taking any vitamins/supplements? Were you getting more sunlight? Etc). It sounds like you're under more stress in England and that can play a big role too, so maybe it was mainly a combo of diet + stress/lack of stress. At any rate, I'm sorry to hear you're in a flare now. What medications are you currently on and what have your doctors said about your flare?

 

[Emmy]

I'd say a fairly standard Chinese diet. Maybe less veggies than them, but that's cos I was told to avoid alot of veggies, too fiberous. I've read about the argument that a western diet causes IBD more, I know theres been an influx of western food in China in recent years, and an increase of IBD illness too. So it's pretty possible. I was getting more excercise I spose, but not by much really. I used to ride my bike around town to get places. No supplements. Should have been taking Adcal D3, and/or a vitamin tablet. But I always forgot the vitamin tablet, wasn't prescribed anyway. The Adcal was... XD Sunlight... I dunno, I ended up living on a weird schedule by the end of my time there, so I was living by UK time almost.
Deffo more stress in England. Literally I was back for less than 2 weeks and parents already started asking about me finding work and stuff...
Currently on Azathioprine and Prednisolone. I was on Humira from July/August to November, but that didn't seem to do anything, since I was on a decreasing dose of pred then, and it seemed to flare as the dose decreased, and I lost more weight, couldn't eat, energy zapped etc. My Crohn's is in the terminal ileum if that helps XD. Docs said if Azathioprine doesn't work theres another drug which I could try, and then pretty much it's the surgery option I think... Azathioprine worked before, so I'm really hoping it'll work again. I mean I'm eating again, small amounts, still uncomfortable and bubbly after I eat, but I'm eating... just need energy back. Only been back on the Aza for 3-4 weeks, having 2 weekly bloodtests and all that jazz to keep track.

 

[lells033]

Hi Emily! I'm also new here :] I haven't been diagnosed, but I just wanted to add that I definitely notice my symptoms getting worse when I'm worried or stressed (which happens much too often ). Also, I love Dr. Who and Once Upon a Time too!