What is out there?

[tvagts]

Good afternoon to everyone

My name is Thomas and I am a newly registered dietitian. I am also someone who has lived with Crohn's Disease for about 3 and a half years now. I have to say I am one of the lucky ones and I have not had a flare-up since I entered remission 3 years ago. I was told mine was moderate to severe, but my symptoms while flaring up suggested it was a bit more mild, due to my lack of weight loss.

My knowledge level is not where I want it, but eventually, I would love to be able to have a business or service that specifically helps those with Crohn's, as well as other intestinal illnesses out with eating and finding out what works best for them. My gastroenterologist had nothing to really help me out with, except trial and error, as most of you have already been through. I just wanted to share my little story on here and ask to all of you who have lived with this disease longer than me or those just being diagnosed, what things you wish you could have, in terms of dietary council or advice? I never had the option to go to someone for that kind of help, but I did happen to be in college for my nutrition degree at the time, so I had my studies to fall back on and basic research. Again, I am new in dietetics and am not in expert in the field or anything, but I have my own experiences and I am continuing expansion on my knowledge of this disease every day. Thank you so much for reading and hope to hear fromn some of you!

 

[Lisa]

Hi and welcome! One of the biggest things to keep in mind (in my opinion) is that there is NO 'one system/way/diet that fits everyone'..... what may work for one person may not for another, so diet needs to be addresed on an individual basis.

So how have you managed to achieve your on going remissio n? Are you on any medications or have you been able to control symptoms with diet? I know some here have had more success than others with diet - if you look around you will find there is a VERY wide range of people with symptoms and disease progression.

 

[Lisa]

Hi and welcome! One of the biggest things to keep in mind (in my opinion) is that there is NO 'one system/way/diet that fits everyone'..... what may work for one person may not for another, so diet needs to be addresed on an individual basis.

So how have you managed to achieve your on going remission? Are you on any medications or have you been able to control symptoms with diet? I know some here have had more success than others with diet - if you look around you will find there is a VERY wide range of people with symptoms and disease progression.

 

[UnXmas]

I wish I hadn't been gullible enough to believe all the extreme, "alternative" diets that are claimed to help those with health problems stood any chance of working. I wish there'd been a dietician to tell me that various tests for food intolerances are scams, that there's no need to give up grains/gluten/dairy/processed food/non-organic food/etc. (except in cases of lactose intolerance, coeliac, and genuine food allergies confirmed by conventional tests). I wish I'd had a dietician to tell me that the improvements that could be achieved through diet are very limited, and that trying to pinpoint individual foods with specific symptoms is usually a waste of time - overall diet it much more important than each individual food, and it's very easy, if you try exclusion diets or keep food diaries, to convince yourself you're seeing correlations between foods and symptoms that are not actually there.

The only dietary change that has actually helped me is reducing the amount of fibre I eat - which is one of the few dietary factors recognised by conventional medicine.

One other thing, which actually seems to go against my feelings on diet in general, since it involves food having a strong effect where otherwise I find the role of food to be over-emphasised, but never mind: I wish my stoma nurses had warned me more about how fibre can cause blockages when I got an ileostomy!

 

[Justanothercp]

I went on Paleo/low FODMAP diet. It made a huge difference for me. I've been diagnosed for over 20 years, 1 resection, still take lots of Meds; I wish I had figured out the difference the diet could make earlier....