Food to avoid..or not

[Bunty]

I'm recently diagnosed with UC and probably crohns. I've just finished a nine week course of prednisolone, and currently take two 2g sachets of pentasa granules daily. Thankfully, everything has settled down.
Right at the beginning, when I was really struggling, the IBD nurse rang me and one of the things she said was that once I was in remission (which I believe I am now?) then unless I was advised to by the gastro consultant or dietician I shouldn't avoid any foods. This surprised me as I was under the impression there are a number of things I should avoid forever.
I have my first face to face appointment with the nurse in two weeks, and a further gastro appointment a couple of weeks later. In the meantime, I wondered what your opinions are about what I've been told..have you been told the same?..and whether there are foods you avoid.
Bunty x

 

[Lisa]

As far as what foods to eat or avoid, it is an individual experience for each person. The best thing to do is to keep some type of food diary and record what foods seem to cause issues and what foods are "safe".

 

[UnXmas]

Your nurse is correct in that the current standard advice in conventional medicine is that no foods need to be avoided. There is no evidence that eating particular foods will cause a flare or cause any lasting damage, unless there are special circumstances, and in these cases doctors should and will advise a patients with Crohn's to avoid certain foods (e.g. right after surgery, when the patient has a stoma, someone prone to obstructions, etc.).

However, many people with Crohn's find certain foods or diets make their symptoms better or worse. Some find this only when flaring, some stick to particular ways of eating all the time. It's very individual, but some foods that are most likely to worsen symptoms include dairy (if lactose intolerant), foods high in fibre, alcohol, spicy foods or very rich foods. Some can also minimise their symptoms by eating in certain ways, e.g. eating little and often rather than eating big meals.

Some people find foods make their symptoms worse, but feel it is worth it to carry on sometimes eating foods they enjoy - it's up to you really. You might want to experiment a bit and find what works best for you. Again, you may make mistakes and make yourself feel worse at times, but you're not going to do lasting harm. Remember that just because you feel worse after eating a particular food, it does not mean that food was the problem, it could have been coincidence, and it could be that eating would have made you feel worse no matter what it was you ate. Look for consistent patterns.

Some people find keeping a food and symptom log useful. I didn't, as I tended to see patterns where there was actually only coincidences. The same with a dietician - some people find them very helpful, but once you've learned the basics, so much is trial and error and specific to you as an individual, a dietician may be more useful as someone just to sound ideas off of and to motivate you to stick to a healthy diet rather than as someone to tell you precisely what to eat.

So you may well find that your doctors and nurses don't advise you to keep to any strict diet, as there's no official evidence that that will help you, but some are very knowledgeable about diet and can give you a lot of unofficial advice based on what they know to have helped other people.

 

[Bunty]

Gosh, thank you both so much for your very prompt answers
UnXmas, your answer was particularly comprehensive and informative, thank you for taking the time xx
I do appreciate that everyone is different in their response to various foods, I suppose I'm just trying to gauge people's reactions and hear their experiences once they're in remissionnow and can eat 'normally' again now that I'm in that position myself. I would be so disappointed if I ate something and it set the whole thing off again...
Thanks again, much appreciated.
Bunty x

 

[UnXmas]

If you want to try eating normally - I'd say go ahead. If you feel worse, you can return to "safer" foods and get things under control again. Are you avoiding some foods at the moment, and are you experiencing any symptoms at present?

 

[Alley2231]

I was on a low residue/low fiber diet for a while. I started reintroducing foods after 2-3 months, because the carbs didn't help with the weight gain I was already experiencing with the Prednisone. My GI doctor even said I won't know what bothers me until I try it again. He did say that some foods, like sunflower seeds and the like may bother me, but it doesn't mean I can't ever eat it, just eat it in small quantities. With experimenting over the last few months and keeping a food journal I have figured out what to stay away from and what foods I'm very happy to eat again!:smile:

 

[Bunty]

I have been trying to eat normally for a few weeks, just small amounts of things I'd totally avoided while it was all flaring, and have tolerated them well. The only things I'm very cautious about eating again are nuts and seeds, I just have this picture in my head of the hard bits getting stuck somewhere and setting it all off again.
I'm not experiencing any of the symptoms which originally took me to my GP, I have never have had any pain and very little in terms of loose bowel movements, my symptoms were lots bleeding and mucous, lack of appetite and a general feeling of being poorly.
Having been on prednisolone for nine weeks, and put on 12lbs in that time, not to mention hot flushes, heavy legs and arms and other odd feelings, I suppose I'm just very, very anxious to do all I can to prevent a flare up requiring more steroids. This is all very new to me.
Alley, what foods do you stay away from?
Thank you once again for your replies.
Bunty x

 

[Jabo]

I am following the auto-immune Paleo diet. It is very restrictive. It helps me soooo much.

I'll summarize it for you. Just eat organic fresh fruits and veggies with high quality organic meat.

 

[UnXmas]

I have been trying to eat normally for a few weeks, just small amounts of things I'd totally avoided while it was all flaring, and have tolerated them well. The only things I'm very cautious about eating again are nuts and seeds, I just have this picture in my head of the hard bits getting stuck somewhere and setting it all off again.
I'm not experiencing any of the symptoms which originally took me to my GP, I have never have had any pain and very little in terms of loose bowel movements, my symptoms were lots bleeding and mucous, lack of appetite and a general feeling of being poorly.
Having been on prednisolone for nine weeks, and put on 12lbs in that time, not to mention hot flushes, heavy legs and arms and other odd feelings, I suppose I'm just very, very anxious to do all I can to prevent a flare up requiring more steroids. This is all very new to me.
Alley, what foods do you stay away from?
Thank you once again for your replies.
Bunty x

Nuts and seeds can be problematic, as they don't break down in digestion, but I don't believe they will actually induce a flare, as far as I know. Still, they are quite easy to avoid. They always gave me problems, but since having an ileostomy I avoid them completely because my stoma is very prone to blockages. I follow a low-fibre diet. Before I had an ileostomy, I ate moderately low-fibre as too much would worsen diarrhoea and generally increase discomfort. Since having an ileostomy, I am strictly low-fibre to avoid blockages.

If you find nuts and seeds give you problems, you may also want to avoid or cut down on other foods which don't break down, like dried fruit, raw vegetables, onions, bran and other whole-grain cereals, and fruit skins and pips.

But ultimately flares are not within our control. The best thing to do is have regular check-ups with your doctor to make sure that any flare-up is caught promptly, and monitor how you feel so you know right away if anything changes.

 

[Alley2231]

I have been trying to eat normally for a few weeks, just small amounts of things I'd totally avoided while it was all flaring, and have tolerated them well. The only things I'm very cautious about eating again are nuts and seeds, I just have this picture in my head of the hard bits getting stuck somewhere and setting it all off again.
I'm not experiencing any of the symptoms which originally took me to my GP, I have never have had any pain and very little in terms of loose bowel movements, my symptoms were lots bleeding and mucous, lack of appetite and a general feeling of being poorly.
Having been on prednisolone for nine weeks, and put on 12lbs in that time, not to mention hot flushes, heavy legs and arms and other odd feelings, I suppose I'm just very, very anxious to do all I can to prevent a flare up requiring more steroids. This is all very new to me.
Alley, what foods do you stay away from?
Thank you once again for your replies.
Bunty x

With my findings I stay away from kale, pepperoni (due to that I also stay away from sausage, salami, hot dogs and other processed meats), whole blueberries (I can tolerate them blended in a smoothie), oranges. Anything with a skin on it like apples or cucumbers I peel them first - not to the point of experimenting with that yet. I also am still staying away from raw veggies, lentils and salad.

I was on Prednisone for 6 months, with half of that time being a high dose. I loathe that drug and hope I never have to go on it again! I gained 35lbs in the time I was on it and I'm currently taking 2 different acne medicines, because with the last taper and being off of it, it's really messed with my skin! I've been off of Pred for 2 months and I'm finally capable of losing some weight and I'm still waiting for the day I'm told it'll just 'fall off' me!

 

[Bunty]

Thanks for your replies
I love nuts, especially cashews and almonds, and used to munch on them regularly. You're right, it would be easy to just avoid them altogether but maybe I'll give a few a go and see what happens.
I read about processed meat causing some people problems, I wonder why that is? I don't eat much of it myself...apart from bacon, who can resist a bacon sandwich?? I'm so sorry you're having acne issues Alley, I know from experience how confidence sapping it can be, I suffered from it for many years from my teens to my 30s. Steroids certainly are a blessing and a curse!
Jabo, I'm glad the diet has worked so well for you. It does seem very restrictive and not something I think I could follow..at the moment. I guess if things deteriorate for me in the future I'd be prepared to try anything though.
Bunty x

 

[UnXmas]

I have no problem with processed meats. You can eat nut butters if you want nuts but are worried about the consequences - smooth nut butters go down very easily.