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Crohn's Disease Forum » Your Story » 25 and fed up of pain and cant find any foods or diet that works so i can live a normal life,


04-01-2013, 04:57 PM   #1
phil-87
 
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Location: carmarthen, United Kingdom
25 and fed up of pain and cant find any foods or diet that works so i can live a normal life,

Hi all im 25 from wales uk, iv had crohns since i was 13, last 4years iv had it very bad on and off from day to day or week to week, i cant find a diet or specific foods that i can eat and wont affect me and can live a normal life as all i want to do is be well enought to go to work and earn money and enjoy life but last 2years i havent been able to that,

this is list of foods i dont touch .....

acidic foods or drinks
meat of any sort
nothing fried or cooked in oil
spicy or hot foods
rice or pasta as it gets stuck
fizzy drinks
alcohol
brown bread
no seads or nuts
not to much dairy foods.. ( milk with cerials is all i can handle or a cheese sandwich)
ready meals
no fruit or veg at all as they all get stuck

things i find i can eat but then somtimes im in agony with

white bread
cheese (sandwich)
pizza
ice cream
scrambeled eggs
jelly
toast
ham
jam
baked beans
maco cheese in tin
orange or black currant squash,

i cant seem to find a diet or any one food that i can eat and know i wont be in pain in few hours, its very frustating as im a hgv lorry driver i cant just eat anything and need to pack for week which i dont mind just be nice to know what to pack,
iam on the modulin power that you mix with water to make a shake which does help as i know ill b ok but it doesnt give me energy or goodnes that other foods do that are part of 5 a day, plus being up so early or late doing my job it doesnt wake me up or keep me going like a coffee or sandwich can, neither i can eat late at night or early in morning, between 6am and 6pm i eat any earlyer or later than that im in pain no matter what i eat, so thats my deadlines,

is there any one else is same boat as me , i dont mind eating same foods over and over again if ill be well enough to go to work as i like my job and the goverment wont evan look at my form or give me help if im not working iv tried and as i can get up dress myself and do daily tasks they wont help me in any way,

can anyone give me help or advise on foods to try or doc to see ect,
fruit veg meat fried foods and anything that isnt almost watery i cant eat thats how i look at it if its hard or hot spicy then ill be in hospital needing morphene,

and yes i know the opperation i can have but i have 3 restrictures and only 2 they can remove so whats point when ill still b in pain and unable to eat,

thanks for reading all and hope to hear from some one with any idears
04-01-2013, 05:11 PM   #2
Jim (POPS)
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First off, welcome to the forum. I have found this place to be a great place for support. My friends in the chatrom help take the edge off of the crohns when it is having its way with me.
There are a few foods that don't seems to bother me, they are ,baked potatos, white rice, custard pudding, vege soup that is home made and cooked very well. The veges will just melt in my mouth that how long I will cook it. Chicken that is baked slow and low. I bake it for about 2 hours, the first hour at 350 and the next 1 or 1 1/2 at around 275-300 covered in foil. I hop this helps. I know what you mean about not having a life at times. I have been doing really good for the last month and today the crohns said, hello again. I pisses me off. Well, the next day might be better. Thats all we can really do is hope and pray for the best and support each other.
I hope you find the food that will help you soon and get better soon.
Jim (Pops)
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04-02-2013, 06:50 AM   #3
Angrybird
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Hello and welcome to the forum.

Just to confirm are you on any meds and if so what are you taking? Also you have three strictures but the docs can only operate on two? What explanation have they given for this? Food wise everyone is very different with what their tummy will handle, it is however worth looking at our diet and sups forum as there is a lot of helpful info here on this area: http://www.crohnsforum.com/forumdisplay.php?f=17.

AB
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
04-02-2013, 08:35 AM   #4
acc929
 
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Ugh I feel for you! My strictures were giving me crazy grief and then I perforated -_-. Ever since I've been on a liquid diet. It's not a permanent solution, but I haven't felt this pain and bloat-free in at least a month. As long as you pay attention and make sure that your calorie intake remains at 2000+ (I'm doing 3000 a day) your weight shouldn't suffer - I'm having lots of olive and coconut oils in everything. If you're waiting to try a new treatment or surgery, this might help in the short-term just to get your head back in an okay place - nothing like chronic pain to make you totally loopy, and then it's just a vicious cycle!
04-02-2013, 05:10 PM   #5
Johnatron
 
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As Angrybird said, different foods will affect everyone differently. I suppose I am quite lucky in that there's not a lot I have found that specifically affects my Crohn's. The only thing I have really noted is that cabbage doesn't really agree with me. Maybe speak to your gastroenterologist about your medication. Buscopan can be helpful in taking the edge off of cramps so maybe give these a try. I believe you can take up to 8 a day but I would double check this as it may be a person-specific requirement. Hope you find a better diet pattern and feel better soon!
04-02-2013, 05:40 PM   #6
amrycrohns
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It's not a fix, but you could check out ensure or other liquid meal replacements, I lived on Ensure clears for a few weeks at one point till dr. figured out medication enough that allowed me to eat solid foods easily.
I have multiple strictures and haven't had surgery on any of them and don't plan too unless it gets in a real bad way, the severity of the stricture could play a huge role in pain you are having, Is the dr. saying he will remove the to worst ones are all 3 pretty bad? Are the Strictures from scar tissue or inflamation? If they are from inflamation just treating the inflamation may help.
04-02-2013, 11:43 PM   #7
happy
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Welcome to the forum phil-87. Since you are in the U.K. you could contact Addenbrooke's Hospital and try Professor John Hunter's program. They prescribe Enteral Nutrition there, and then a partial or full elimination diet after. They might have suggestions about how you could keep up your energy levels with the liquid diet. More info about this program is on this website under crohn's and nutritional therapy: http://www.crohns.org.uk
May you soon be feeling better.
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