Newly diagnosed - really confused about diet.

[theanonphilosopher]

Hi everyone,

Basically I was only diagnosed last week with Crohn's disease. They want to do a further investigation to confirm everything, but I have been told (because of colonoscopy and blood tests) that it is 99% that Ileum Crohn's disease with a narrowing due to scar tissue.
They gave me several medications after the colonoscopy to which I had a bad reaction and ended up back in hospital with my symptoms being the worst they have ever been.
Therefore, for the time being the doctor has referred me for an mri scan and put me in touch with the specialist nurse. However, it will take 6 weeks before I am in contact with anyone else from the medical profession and I have been given very little information as to how to deal with it. The doctor said just try to manage your diet (low protein, low residue) but has given me very little information other than that.
My real question is that I am not sure whether I should be following the usual rules for someone with Crohn's disease. This is because I suffer from excessive constipation and lack of frequent bowel movements rather than diarrea and too many bowel movements.
Therefore, I was wondering what should I be eating. For example it says on most websites that coffee is not good for someone with Crohn's. However, on this thread ( showthread.php?t=3473 ) Isla says that he drinks coffee to ease symptoms similar to mine. Basically, I was wondering whether the common guidelines that I find on the internet are relevent for me or whether the opposite is in fact correct.

Thank you in advance for any help. And thank you for taking the time to read my thread.

 

[scottmyster]

HI there, and welcome to the forum, Dieting is a trial and error thing.If your constipated then i would take benefibre solube fibre but if you are having diarrhea or cramping i would stay clear of anything with fibre into it. you can eat fruits if they don't affect you. white rice. you can also try boiled chicken you wouldn't believe the fat that comes out of that stuff. you can eat veggies boiled. apples sauce, peach sauce, white bread,crackers, Plain cereals, ex.cheerios, cornflakes, and rice krispies.
you can also try the link below and go to there website to have a list of foods that you can eat that are low in residue diet.If i were you i would start a diet diary and mark down the foods that agree with you and the foods that don't and stick with the foods that don't cause you grief. i hope this helps.best wishes.
http://www.healthcastle.com/low-residue-[wiki2="Fiber"]fiber[/wiki2]-diet.shtml

 

[outlier]

All that i understand is that it's really personal to everyone. and what's safe for one person is horrible for someone else.

take it slow and listen to you body. Good luck

 

[kllyeve]

I also suffer more from constipation and I do find one cup of coffee per day helps keep things moving. More than that and Ican't sleep. I also use teas and chinese herbal supplements to help keep things moving. Drink plenty of water as I find I need way more than 8 glasses a day to keep the bowels moving - I also take a stool softener which draws water into the bowel.

I haven't found many food modifications that affect me - popcorn, tomatoes, milk, steak, I know will cause pain.

There is lots of good info here - even for us weird Crohnnies with opposite symptoms to everyone else!

 

[Loriebird]

Wow! I thought I was the only one that suffered from severe constipation with Crohn's. Everyone else had problems with diarrhea, and my doctors acted like I was a freak of nature. That's why I didn't think I had Crohn's at the beginning.

Everyone says not to take fiber with Crohn's. But I always took stool softeners (NOT laxatives - they put too much pressure on the system) and gentle fibers. I love Fiber One bars and cereals. Avoid wheat, though, because it's harsh and has always caused bleeding with me - if you eat fiber, try to eat oats.

I would always eat the high-fiber oatmeals in the morning. They helped a lot!

Avoid sodas - they make things worse.

Coffee helped me to a certain extent, but since I can't have dairy (and I always have cream in my coffee) it caused more problems than helped.

Once I got my Crohn's under control, the constipation got dramatically better too. So focus on getting the Crohn's disease itself under control, and it will also help.

 

[Loriebird]

PS, I share your frustration. It was so hard for me to be diagnosed and no one could tell me what was safe to eat but, at the same time, it was my fault when I got a flare because I was eating the wrong thing!

Start with bland, safe foods, and work your way up. I primarily avoid wheat, acidic foods (acidic fruits, juices, sodas, coffee), dairy, alcohol, and tobacco.

Even though I know everyone says it's different for everyone, I found this incredible recipe/diet book written by a doctor with IBD for people with IBD. I followed it to a T, and I have never felt better. I will try to get the name of the book and share it with you - maybe it will also help you.

 

[IslandArts]

That book sounds like a must have loriebird. I can't tell what to eat right now. Waiting for my colonoscopy and a diagnosis but everything seems to cause an issue, even the bland foods...bleah. Fortunately my mocha with soy milk doesn't seem to cause an issue..whew.

 

[flowergirl]

i'm really confused about my diet as well. my inflammation is only in my rectum, so i don't get the normal abdominal pain or cramping that most people with crohn's get, and therefore hard to determine what's making it worse.

i will say in the last week or so i can tell certain foods literally make my butt hurt. apparently bananas, eggs and today i discovered orange juice is not so great.
sometimes it doesn't make sense though -- like milkshakes are completely horrible, but pizza seems to be ok. i don't know if i can't tolerate milk but cheese is ok?

too much fiber seems not good either. thankfully i don't have diarrhea or constipation.

unfortunately i can't really afford to go on an elimination diet as i'm already too underweight and need to gain and not lose.

 

[hugh]

like milkshakes are completely horrible, but pizza seems to be ok. i don't know if i can't tolerate milk but cheese is ok?

interestingly, most cheeses have low amounts of lactose, might be worth looking at?

 

[toneloc]

Constipation

Hi everyone
I periodically suffer from the above.
I avoid fizzy drinks at all costs, they are really bad for me.
I drink regular tea & coffee until midday, then move on to decaff tea & coffee from then on. My sleep pattern has improved after this modification.

I like wheat fibre cereals (WEETABIX) they are ok for me no issues I need fibre to go to the loo. I also took Lactulose when I got bunged up. Diet is such a personal thing, one thing good for me might not be good for you.

Trial & error is the order of the day i think.

Good luck to you
Tony

 

[GUTsy girl]

food I can tolerate

I have had Crohn's for over 20 years. When I was first diagnosed I was real sick and had to learn the hard way what foods were not my friend. Reading posts I realize how individual we all are. I do not have milk or gluten issues, but Spinach, Popcorn, Poppy Seeds and Fried foods are deadly to me. For 18 years I only had minor episodes... until now. For 3 weeks now I have been dealing with a flare. The only foods I have found I can eat without pain or nausea or worse are, are soft boiled eggs, toasted english muffin, cottage cheese, jello, pudding and broth.

I also wanted to mention, for any newly diagnosed, that from my experience. I have foods that I can eat, generally without any problems. Foods I can never eat (as I stated above.) But there is a 3rd group. When I am healthy I can eat these foods, but during an episode, I avoid raw veggies, salads, nuts... foods that are harder to digest.