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Can you eat anything when you are not flaring?????? After surgery diet guidance please

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Crohn's Disease
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Posted 6/12/2011 11:48 PM (GMT 0)
My daughter just had surgery for a blockage and fistula which is why the 6mp or Mercaptopurine or Purinthol was not helping. The doctor said no medication would help a blockage not even Remicade. She was not completely blocked but almost.

Anyway, both of her doctors, surgeon and hospital doctor said that when the Crohn's is gone you can eat anything you want, meaning when you are in remission food will not cause your flares.

I was under the impression (from things I had read) that you always had to strictly watch your diet. Now I would hate to put her on a strict diet for nothing if they are right.

I need people with experience to give me some guidance.

ALSO, what medications seem to have the least side effects? The 6mp caused her significant hair loss.

Thanks.
Posted 6/13/2011 12:09 AM (GMT 0)
my surgeon told me to stay off cabbage/cauli/brocolli but otherwise to eat what I like.

my gastro specialist also told me to stick to FODMAP which seems to control my IBS.

went 'mad' the other day and had a peanut slab (peanuts in chocolate) which pre surgery would have probably have killed me <LOL> it was DIVINE and I felt really naughty :P so silly really but total decadence after living on a strict very low residue diet for years pre surgery.

I found mercap suited me better than 6mp but we are all different. Hope whatever she has gives her a long and healthy remission.

hugs
Lesley in NZ
firm believer in a a little of what you fancy is usually OK (in moderation and if you chew really well anyway ;P)
Posted 6/13/2011 12:57 AM (GMT 0)
I agree with kiwi; if she's in remission, eat anything (or most things) in moderation, but go very slow in trying new foods and chew very well. I wouldn't advise eating any unpasturized dairy, and limit the high sugar/refined flour and processed foods. Try some of the veggies and fruits that she couldn't eat before.

I'm post op and I'm lovin' salads, tender steaks, small amounts of peanuts and seeds, etc. I've been trying new things very slowly, but I'm still eating a lot of the gluten free and natural foods that I ate before too.
Posted 6/13/2011 1:02 AM (GMT 0)
We are all so different, but at first she will need to avoid anything rough until things heal. Then gradually she can add in things and see how it goes. I would never be so bold as to say she could eat anything, but certainly she should be able to eat a much more varied diet than she has been. I have had 4 resections and I have had to restrict my diet to a modified low residue diet. After my first resection I could eat a lot more than I can now. Food will NOT cause a flare, but it will aggravate any inflammation that is already present.

I have been maintained on 6MP with out many, if any side effects, so I am not a lot of help there.

Having just gone through a resection, I hope your daughter is doing OK with her recovery. I know how rough it can be. I think she will be amazed at how good she feels once she gets past the worst of the surgery pain.
Posted 6/13/2011 1:13 AM (GMT 0)
Thanks so much for all the help and information.
Posted 6/13/2011 1:39 AM (GMT 0)
Sorry, I missed the words "just had surgery" and thought she was well into recovery. I agree with Zanne, avoid all roughage and hard to digest foods until well into recovery, then try new foods in moderation.

My surgeon told me after I left the hospital I could eat a big mac—no way so soon after surgery would I have eaten a big mac. I guess he figured the plumbing is okay, so the pain and "d" are nothing to worry about. lol.
Posted 6/13/2011 1:41 AM (GMT 0)
Yeah I was thinking long term, like can you eat anything once you are completely healed. Also I need to find out from them for sure when that time frame is, definitely do not want to push anything, but I do have a hungry anxious little girl who seems to smell everything we have eaten when we enter the room. LOL
Posted 6/13/2011 1:58 AM (GMT 0)
One thing to avoid with certainty, whether she had crohns or not
Is fried food,
Just my 2 cts worth
Hope all is well
Tigerpawn
Posted 6/13/2011 3:00 AM (GMT 0)
I would for sure avoid fiber, raw veggies and fruit, stuff like that for a while. But if she is craving the food around her, try to find a way for her to get that flavor. If you are all eating steak, maybe some nice lean ground beef, but just a bite or two to see how it goes. The fact that she is craving food is a really good sign, her body wants all the things it hasn't been able to have. I love salad, but there is no way I can eat it any more. I put salad dressing on baked potato and get the flavor of my favorite salad dressing. It isn't the same, but it helps hit the same flavor notes. You will have to be creative for a while in trying to find alternatives to some of the "bad" foods that she craves so that she can get the tastes she wants without the hurt.
Posted 6/13/2011 10:11 AM (GMT 0)
You've gotten alot of great advice. My personal experience in 29 years since my first resection is go slow, try small amounts and keep track so she knows what will be trigger foods. I honestly never know how my body will react. I had some watermelon this weekend with minimal side effects (mostly D) but next week it could double me over in pain. This DD is so unpredictable.
Posted 6/13/2011 1:17 PM (GMT 0)
Of course diet and lifestyle matters. The problem is that everyone is affected differently. For example the SCDiet has helped thousands to maintain remission but it does not work for everyone. Many of the foods that do me in are SCD legal, and many of the foods that are SCD illegal such as potatoes are perfectly fine with me.

I recommend keeping a food diary to determine your lifestyle triggers. I can eat homemade cocoa but will get bloody diarrhea after a Starbucks hot chocolate. Many of the usual suspects are gluten, lactose, and high fructose corn syrup. But they can include anything, even foods that appear innocent. E.G. Kale and plums are not good for me but I am sure are fine with others.
Posted 6/13/2011 1:26 PM (GMT 0)
I would have to agree with the others. Do go slow, and try somethings and see how you do. I still cannot eat broccoli or cauliflower. That give me such bad gas pains, I avoid them at all costs. Good luck!

As for meds I suggest giving the 6mp another try. She could have had increased hair shedding (more than normal) because she was also having such bad malnutrition. She can add in some folic acid and that should help to decrease some of the hair loss. It has helped me alot in that area. And 6mp/Imuran are great meds and have been successful in keeping many in remission. Hugs!
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