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03-03-2016, 07:21 AM   #1
rosannalola
 
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Research into Crohn's sufferers and their diet

Hi,
I am currently doing research into how knowledgable Crohn's sufferers are about their relationship between their diet and their condition.
I'm studying for a diploma at Sussex coast college in health sciences where I will go on to study to become a nurse.
I suffer from Crohn's disease myself so am very interested to learn more about the condition.
I would be very grateful if you would please compete my questionnaire there is 10 questions, no personal information is given and any answers provided will be in total confidence.
Thank you very much

https://www.surveymonkey.co.uk/r/TKVXBTZ
03-03-2016, 03:29 PM   #2
Jennifer
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Diagnosis: Crohn's in 1991 at age 9
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Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-03-2016, 08:12 PM   #3
Rich Pell
 
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Submitted.
03-03-2016, 11:55 PM   #4
RNGirl
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Submitted 😊 Good luck in your nursing career. Really tough, but wouldn't change a thing!
03-04-2016, 01:39 AM   #5
tots
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Done
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
03-07-2016, 02:56 PM   #6
rosannalola
 
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Thank you very much really appreciate it xx
03-08-2016, 01:38 PM   #7
Christi
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Hope it helps :-)
03-12-2016, 03:49 AM   #8
rosannalola
 
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Thank you-it's definitely helping! I'm learning so much about different ways people are dealing with their condition
04-05-2016, 07:46 AM   #9
rosannalola
 
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I've had 64 responses so far and would really like to make it to 100 this would really help my analysis so please please please if you can take a few minutes to look at it
Really appreciate it
04-05-2016, 02:04 PM   #10
fuzzy butterfly
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Hi done the survey. Hope we all help you with your diploma.
Best wishes 💕
04-05-2016, 04:36 PM   #11
danielle.wilson411
 
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Done!
04-05-2016, 06:21 PM   #12
my little penguin
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04-07-2016, 07:20 AM   #13
rosannalola
 
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Thank you-71 responses so far xx
04-07-2016, 08:18 AM   #14
jmp62575
 
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Done - crohns colitis - diagnosed 2012
04-09-2016, 05:37 AM   #15
rosannalola
 
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Thank you -74 people now
04-09-2016, 06:14 AM   #16
JMC
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Hi,
I am currently doing research into how knowledgable Crohn's sufferers are about their relationship between their diet and their condition.
Can you define what you mean, by "knowledgeable"? You are implying diet is a factor in Crohn's disease and that there is something we should "know". Can you please reference the research which demonstrates this?

My view based on many years of personal experimentation making changes to my diet, including tracking everything I ate on a daily basis for over 2 years and recording the impact on factors such as number of bowel movements, fatigue levels, mood, pain, etc is that diet is important in the same way that it is for any healthy individual - no more and no less. Eating a good diet has a positive impact on your overall health, as does taking exercise and sleeping well. Although I do modify my diet based on how I am feeling, I would caution implying that is a big factor in the disease or that it can change the course of the disease progression or outcome.
04-10-2016, 02:21 PM   #17
rosannalola
 
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I have done research into this subject and have found many investigations into how certain food groups can affect Crohn's by improving or worsening symptoms there is also a lot of research into people knowing what different food groups improve or worsen there symptoms. I'm not implying diet is the only factor for Crohn's disease but for me personally I can control it by what I eat and it is a lot of recording and working out what works and what doesn't. So for this Reason I am purely interested to see what other people think,how they cope with the disease and how much help and support there is out there. You've said yourself diet isn't a factor but for me it is,Crohn's unfortunately is a very complex disease so one person suffering from it is not going to have the same symptoms or treatments as the next,meaning we can't rule out that diet can play a very important role.
04-10-2016, 02:42 PM   #18
Lizzie
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I think many of us have started out feeling very positive and optimistic about the role of diet only to become disillusioned over time. Perhaps that's because so many people on this forum have very difficult Crohns - my suspicion is that diet is possibly only helpful for people with milder problems, who by and large don't loiter here much. So perhaps if you're looking for evidence of diet being beneficial we are the wrong group of people to ask. (Or maybe that's just my jaundiced view, as I'm struggling quite a lot with this hideous disease.)
04-10-2016, 02:50 PM   #19
rosannalola
 
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Sorry to hear that like you say it is a hideous disease.
I agree I think the role of diet in Crohn's disease might only benefit a small few, but the answers given on my questionnaire have already provided me with knowledge I did not know before.
There has been a lot of research into diet and does continue to do so-like there is with medication and other factors that affect this disease.
i would like to reach 100 on my survey but if not I do have more than enough data to help me with my research
Thank you all very much
04-10-2016, 03:22 PM   #20
fuzzy butterfly
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Hi all i can say is during my flare years anything n everything i ate or drunk inc water made it worse..since my 1st op for an ileostomy 2yrs back iv been in remmison n able to eat anything.Even after the reversal all is the same, nothing causes me pain from eating or drinking. Odd bouts of the runs sometimes but all good..
Best wishes 💕
04-11-2016, 03:17 PM   #21
JMC
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I'm not implying diet is the only factor for Crohn's disease but for me personally I can control it by what I eat and it is a lot of recording and working out what works and what doesn't.
I think a lot of people start out thinking they can control Crohn's disease with diet and we all wish it was true. Unfortunately, I think you will find that is not the case and if you do have a bad flare, no matter what you eat, it will only get better with the right medication or surgery. Diet alone won't work.

You've said yourself diet isn't a factor but for me it is,Crohn's unfortunately is a very complex disease so one person suffering from it is not going to have the same symptoms or treatments as the next,meaning we can't rule out that diet can play a very important role.
No, what I said, was that diet is important just as it is for any person, healthy or otherwise. If you are not getting the right nutrition and for many that will be difficult due to damage to their intestines, you will feel more unwell than is necessary. Getting your nutrition right is the single best advice you can get about diet.

What I now do not believe however, and this is based on extensive personal experimentation and decades of fighting this illness is that you can completely control Crohn's with diet. Just when you think everything is great and under control, you will suddenly and rapidly become unwell and that has happened to me several times even when eating what I hoped would be the "magic" diet.

I do believe that what we eat or drink has had a significant impact on causing Crohn's disease however, through exposure to the pathogenic bacteria MAP, but once you are infected diet alone will not eliminate it.
04-11-2016, 06:18 PM   #22
Maudddy
 
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Submitted my answers!
Hope this will help.
I am curious in what you have found in your preliminary investigation about different food groups and everything, and what interesting information you gather from our experiences.

Good luck,
Maud
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04-11-2016, 09:45 PM   #23
xeridea
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Submitted my response too.

I should add that even though diet may help mitigate symptoms, I don't think it will impact the natural course of the disease in the long term.

I think this is a disease of some inherent innate immunity defect that allows a trigger by some unknown factor to initiate cascading signals to activate increasingly deleterious immune responses. Though I believe there may be some genetic mutations that confer a pre-disposition to developing the disease, I believe there is likely as much a chance that there may be some missing protective genes against developing the disease in the first place.

The fact that this disease may be or is cyclical, meaning that it goes through periods of remission and flare intrigues me. What factors control this?

Good luck with your study. I hoe you can gain some useful insight.
04-17-2016, 11:01 AM   #24
JMC
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The fact that this disease may be or is cyclical, meaning that it goes through periods of remission and flare intrigues me. What factors control this?
It's an interesting question. What I find particularly interesting however, is that you see the same pattern Tuberculosis. If there is a constant battle between your immune system and a pathogen, sometime your immune system gets on top and sometimes the pathogen. Its an area that definitely needs more research though.
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