Questionnaire.

[SarahBear]

Hi, everyone!

I'm writing a research paper on diet and IBD. I was hoping I could get some information from you to help me out! I've written up some questions. If you could respond to them with as much detail as possible, I'd appreciate it. You can post your responses here, or PM them to me if you feel more comfortable with that.

These questions focus on diet and IBD, but I'd like to get responses out of people who have used diet as treatment and people who haven't. I'm looking for both sides here.

Thanks in advance for your help!

Here are my questions:




1. What form of IBD do you have? When and at what age were you diagnosed?

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

3. What medications have you taken for IBD? Please summarize your experience with each medication.

4. Do you believe diet affects your IBD? Please explain why or why not.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

7. What foods do you think of as being common trigger foods?

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

11. Do you believe treating with diet alone is safe? Why or why not?

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

17. Do you believe exercise and fitness play a role in treating IBD?

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

 

[Jennifer]

1. What form of IBD do you have? When and at what age were you diagnosed?

Crohn's (colitis and terminal ileitis). Diagnosed in 1991 when I was 9 years old.

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

About a year before my diagnosis. I have a lot of theories such as tap water, being around mold, eating spoiled food, living in an unsanitary environment (my parents are hoarders). Crohn's also runs in my family though so its likely a combination of being hereditary and having a trigger.

3. What medications have you taken for IBD? Please summarize your experience with each medication.

Azulfidine, Asacol, 6MP, Prednisone, Entocort, Humira, Remicade, Methotrexate.

Azulfidine - Started to affect my liver and made me very sick. Took it for a few months before I was taken off it.
Asacol - Never had any side effects from it, not sure it even did anything. Was a chore to take 3 times a day (GI let me split the mid day dose so I could take it twice a day). Took it for almost 15 years.
6MP - Never had any side effects from it until 15 years later when it finally started to affect my liver. Had to stop taking it. It kept me in remission after my resection 14 years ago. I had blood work done once a month.
Prednisone - I took Prednisone 4 times in my life. Each time I was kept on it for many months at high doses. I couldn't even notice myself feeling well because the side effects it caused made me so miserable. I can no longer take it anymore because it messes up my blood pressure and I have a heart condition now.
Entocort - Never had any side effects from it. I found it to help control diarrhea, mucus in stool and also alleviated most of my joint pain.
Humira - Helped control diarrhea, mucus in stool and completely got rid of my joint pain within 3 weeks. If not for the side effects I would have stayed on it forever. About 3 months in is when I stopped taking it because it kept causing recurring upper respiratory infections, one right after the other. I was basically sick all the time.
Remicade - Didn't notice it do anything but give me side effects almost immediately unfortunately. I only had 3 infusions. I got a vaginal yeast infection and then noticed my breasts were hurting really bad so went to the doctor and found that I had an infection in each breast. Infections like this if left untreated could lead to breast cancer. Not something I was willing to chance so I was taken off of it (my doctors agreed with taking me off of it).
Methotrexate - I've only been on it for 3 weeks now and don't have anything good or bad to say about it other than its really easy to take (I have an injection once a week). Haven't noticed any side effects yet. Having to have blood work done once a month can feel like a chore but I'll get used to it again.

4. Do you believe diet affects your IBD? Please explain why or why not.

No. I believe it may help lesson symptoms or aggravate symptoms during a flare. After 22 years since my diagnosis I've only seen food/beverages to have an effect on symptoms during a flare. The only diet that worked well short term was the liquid diet while receiving TPN for 2 months.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

Hard to say. I'm lactose intolerant so generally any milk product causes some issues. There are other foods but they aren't constant meaning I don't always have an issue with them. Nuts, seeds, carrots, lettuce (any kind), coffee, corn (including popcorn), broccoli, jerky, and Oreos (probably because I eat at least a whole sleeve in one sitting). Also, anything that's been barbequed or fried.

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

White rice (I prefer Jasmine), cooked spinach, yams, chicken breast, turkey breast, potatoes (baked or mashed), squash (seeds and skin removed), bread (toasted or not), fish, pork, and tea.

7. What foods do you think of as being common trigger foods?

Anything that would cause problems for people who didn't have IBD. I'd say most if not all of my known trigger foods are common.

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

I've been in remission for a long time and try to eat smart by at least avoiding things that aren't healthy for anyone such as fried foods, candy, soda etc. Yet when I want something, I don't wonder how I'm going to feel later. I just eat it (unless its a milk product, lactose intolerance and all). So no I don't avoid trigger foods really.

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

I never kept a food journal. The list has always been fairly short/self explanatory. If certain spices used in cooking caused problems then I would definitely keep a food journal.

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

Before I was diagnosed I was hospitalized and was not allowed to eat anything until they knew that was wrong. For the first couple weeks I wasn't allowed to drink anything either. This was so they could run tests practically back to back. I was given TPN and went on complete gut rest for 2 weeks then was allowed to go on a liquid diet for 2 months. I don't recall being given any medication because I didn't have a diagnosis, they had no idea what was wrong. So as far as I'm aware I was on a liquid diet for 2 months and in that time the severe bleeding I had did lesson (I say lesson because traces of blood were still in my stool but could only be found when the stool was tested for blood).

So in the end, no I've never used diet to treat my IBD as I didn't have a diagnosis yet but it did help some to go on complete gut rest. I do not recommend doing it without having TPN (nutrition through IV) as well.

11. Do you believe treating with diet alone is safe? Why or why not?

The only thing I find to be unsafe is to not have regular tests done to make sure that you're ok on the inside. Many people have few to no symptoms and wind up having emergency surgery due to a blockage. People with IBD are also at a greater risk of colon cancer. No matter if you treat with medication, diet, supplements, alternative treatments, or all of the above, it is unsafe to assume that its working based off of symptoms alone. At least with proper testing if you find that your treatment option isn't working you will be able to start a new treatment plan until you find one that works for you before you wind up needing surgery or find out that you have cancer that's too far gone.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

I don't see why not. Research is always being done not just on new medications but also foods that may be beneficial. If its proven to be effective in controlling or preventing inflammation then I'm all for it.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

Yes I've discussed diet with all of my GIs. None of them feel that diet affects IBD as far as healing/preventing further damage except during a flare. None would have approved of treating with diet alone. They wouldn't stop running tests though.

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

I would only switch to another GI if mine refused to run tests to make sure that I'm doing ok.

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

No I haven't. Far too expensive. I would try it if my insurance paid for the juicer and produce though.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

My own experience, my doctors, my nutritionist I used to see and this forum.

17. Do you believe exercise and fitness play a role in treating IBD?

Perhaps in a roundabout sort of way. Less stress and more quality sleep is beneficial for everyone. I don't see it as being an effective treatment for mucosal healing or in preventing inflammation.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?

Yes I do and no I have not.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

B12 injection, vit. D3, Iron, Folic Acid, multivitamin, probiotics. When I was first diagnosed I was put on MCT (Medium Chain Triglycerides) oil which are fats that are naturally found in coconut and palm kernel oil. My mom cooked with it and slipped some in my juice. I don't recall it doing anything. I haven't noticed any supplements to have an impact of the IBD itself, just the issues that IBD causes.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

No. N/A

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

I stopped working and went on disability because I need the health insurance. Without the health insurance I would not be able to afford to see my specialists (I have multiple health conditions) and I would not be able to afford to treat any of my health conditions.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

Yes its affected my social life. Not just by not feeling well but by feeling like I looked hideous while on Prednisone or people saying I was too thin. Being a child I was afraid to tell anyone I had it because of fear of being shunned or made fun of but I was made fun of regardless. I used to be religious, not anymore. Lost my faith as a child. I spiraled into a depression many times from the diagnosis itself, to vitamin deficiencies, to side effects from meds, to being hospitalized so many times, from always having to go to the doctor and for never feeling well. A poor social life did/does affect my well-being.

 

[mickey]

1. What form of IBD do you have? When and at what age were you diagnosed?
Diagnosed in late teens with Ulcerative Colitis and then in late 30s with Crohns. They debate whether earlier diagnosis was wrong and was actually Crohns, but symptoms were different, so I have my doubts.

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?
Experienced symptoms in late teens...grew up in very stressful household and tended to hold things inside; particularly the belly. Diet was poor and more sugar based/junk food. Poor nutrition would be culprit, in my opinion.


3. What medications have you taken for IBD? Please summarize your experience with each medication.
Ulcerative colitis: years, years ago, but I do recall Flagyl being one of the drugs.
Crohns: began with steroids, pain killers and anti-inflammatory pills

More recently add Probiotics on a daily basis and digestive enzymes with each meal, as well as daily vitamins.

4. Do you believe diet affects your IBD? Please explain why or why not.
Absolutely! Garbage in, garbage out. I learned this from Eastern doc after many issues. She taught me that many foods are more powerful drugs than actual pharmaceutical drugs and its effects are underestimated. I have tested it after feeling great after emptied by colonoscopy or other cleanse...then trying food and seeing how it bloated me, etc.,...trial and error.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?
Yes, wheat/corn/soy/nuts/gluten/luctose/some fruits/teas/alcohol/carbonated beverges
potatoes, sugar/chocolate...

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.
ginger tea, water, fish, chicken, most vegetables

7. What foods do you think of as being common trigger foods?
probably many of the same ones I noted, corn/wheat are quite common

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?
Absolutely! The more you reduce the inflammation in your body, the less possibilty for disease or a reduction in symptoms

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?
When first diagosed on each isssue the docs had me write one. However, I did not tie it all together until I went to Eastern/Western doc who gave me NASA designed allergy test and the computer spit out huge list of food sensitivities and inflammation points in my body. I am not sure why the Western doc had me keep a journal, since neither doc believes diet affects disease. They wanted to throw meds at me instead.


10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?[/B
After being on meds for six months I ditched them and began to strictly handle with diet and limited interaction thereafter. Diet follows Eastern doc's allergy test results and follow more of Eastern recommendations than Western meds. I eliminated the early meds because I found that I still felt the symptoms (extreme bloating, pain, horrible constipation, etc), but it felt masked. Doc was already talking about the next meds that would have to be used thereafter, then operations, colostemy, etc. He was saying it so matter of factly and did not like me questioning it. I began reading up on things and then with prior experience in Eastern meds for resolving Colitis issues (which had later caused chronic sinusitis issues); after addressing stomach issues with herbs, my sinus issues were resolved. I also was dealing with mother and colon cancer around the time of my crohns diagnosis, so I was adament that I would not be the next one to come down with cancer. I realized that unless I made changes, I could not expect changes to my health.


]11. Do you believe treating with diet alone is safe? Why or why not?
For me it is working, but I am working with Eastern/Western docs to monitor it. I find particular problems after being on antibiotics from an illness. That seems to take months to return to normal. I have no trouble raising the white flag and calling a doc when I feel my health changing and I need help.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.
N/A

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?
My Western docs don't agree diet has anything to do with it. I believe that is quite old school and pretty much taught in Western med. It doesn't come out of the air and if we all seem to be better when not eating ...hmmm...how can that be if diet does not effect it?

14. If with diet, have you or would you change gastroenterologists if they disapproved?
I have not yet changed my reg Western doc, as I have him for other health issues and convenience. However, I use him for the colonoscopies. Eastern doc consulted when I can't figure out change in health and sensing something coming on...

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?
I found juicing to be helpful at times. I hardly do it now (1x/yr, if that), but used to do it almost daily. Not convenient for me and not significant change to merit inconvenience.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?
Eastern doc and internet.

17. Do you believe exercise and fitness play a role in treating IBD?
I believe it has an impact on the health of anyone; regardless of disease. At the very least walking to create blood flow should be done on a daily basis. The life is in the blood and we need to keep it moving to help heal the body naturally.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?
Yes, 5x/week or more at gym. Daily walks with dogs. I notice I feel better working out and more lucid. If having flare up, I skip the weights, but will do the treadmill; regardless of whether i want to do so...

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?
Food based multi-vitamin, Vitamin D, calcium (when possible, gets me quite nauseous), folic acid, probiotics, digestive enzymes

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?
Bikram Yoga now and then. I have noticed it greatly reduces inflammation and helps digestive tract. I noticed 25% reduction in thyroid meds after only two months of 4x/wk of doing that yoga, so I know exercise does have an impact on health. Also, I think the heat relaxes the sinews and since I know I hold my stress in my stomach, that helps release the belly (for me).

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?
Will cancel dinners, if feeling a flare up...won't be able to eat food at parties or dinners due to reaction I know it will have on me, leaving dinners earlier than expected due to reaction, etc...have been bent over in pain and almost passing out when at dinners due to pain.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?
I certainly have had to limit some get togethers and generally avoided dinners, which tend to be heavier meals. While it affected my social life, I long ago vowed I would not let it change my spirit, so I have learned to work around it. I think I am mentally healthier for it, as I see it as a hurdle that I need to jump now and then. I don't play victim and have pity parties. I consider it as somewhat having a flu now and then.

 

[Cross-stitch gal]

1. What form of IBD do you have? When and at what age were you diagnosed? Ulcerative Colitis 18 Ulcerative Proctitis 34

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?
Mine started when I was a child, although I wasn't diagnosed until I was 18. No theories.

3. What medications have you taken for IBD? Please summarize your experience with each medication.
Sulfasalazine: Worked for awhile (even was in remission for a bit till it stopped working)
Asacol: Also worked for awhile and had remission with it too. But, stopped working for me.
Pentasa: Started working at first. But, haven't achieved remission on it yet.
Prednisone: First couple of times worked. This last time it didn't do much.
Canasa Suppository/Enema:Suppository seems to be working somewhat & helps a bit with the blood.
Famotidine: Worked a little better than pepcid. A little stronger.
Hydrocortisone & Rowasa Enema: Very messy. Not the easiest to use.
Azathioprine: Started working well then pulled off it being told that my liver count was too high.
4. Do you believe diet affects your IBD? Please explain why or why not.
Diet might help somewhat.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?
Caffeine, Greasy foods, Beef

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.
Seafood, crab, salmon, shrimp, fish
Chicken/Pork
Baked/grilled items
7. What foods do you think of as being common trigger foods?
same as #5

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?
Yes.
9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?
No
10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience? No

11. Do you believe treating with diet alone is safe? Why or why not?
No. I believe that watching your diet is part of it, but also having a good doctor is helpful on top of what you're eating.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.
Possibly. I think once you know what triggers your symptoms, it's easier to decide what to eat and not to eat.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?
No.
14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?
I would. However, my GI seems pretty open to suggestions and ideas.

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?
No.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?
Haven't really looked about diet. But, I do google about IBD to keep up on info.

17. Do you believe exercise and fitness play a role in treating IBD?
I think excercise and fitness is good for everyone.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?
I mostly walk around, bend, stoop and such at work. But, would like to get into jogging with my husband.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?
Calcium, Iron, Multivitamin, folic acid, fish oil, Vitamin D3, Probiotic Acidophilus, Digestive Advantage for Lactose Intolerance.
Some of them I have. But, others I can't tell.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?No

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?
I do what I can to reduce stress. Because, the more stress I have, the sicker I get.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?[/QUOTE]
I haven't really let IBD affect my social life. Friends and family know what I've got and those who love me have accepted that I'm not always going to feel great. Just do the best I can & that's all I can do.

 

[hbrekkaas]

1. What form of IBD do you have? When and at what age were you diagnosed?
I have Crohn's diagnosed just over a month ago at 28 years, and I also have Celiac (not IBD, but still affects things) at 27.

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

I have had some symptoms for 10+ years, but the serious stuff started about 3 years ago. After being diagnoses with Celiacs and cutting out gluten things calmed down for about 9 months before ending me in hospital with the Crohn's diagnosis, though looking back there were a ton of Crohn's things going on, they were all just passed off as other things.

And I have a theory about what set off this major flare. I started 2 things: Working out almost daily which I'm sure stressed my body, and at the same time I tried to add rice/corn/oats back into my diet after eating a Paleo diet for the previous 9 months. Within a week of eating rice for the first time the stomach pain had started.

3. What medications have you taken for IBD? Please summarize your experience with each medication.
Pentasa,
Predisone
3 types of anti-biotics - not sure of the names.

4. Do you believe diet affects your IBD? Please explain why or why not.

100% I do. I can eat something and be in pain for hours, if there was no connection I would be able to eat what I want.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

I have trigger foods that I avoid completely: Corn, gluten, rice, oats, and nuts.
And food that I limit: Dairy (very little. Bite of cheese a week maybe) and fried foods/vegetable. Chocolate is also limited.

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

Chicken breast
Eggs
Gummy Bears....
Juice
Tea
Fruit


7. What foods do you think of as being common trigger foods?

Caffeine
Greasy fatty foods

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

I'm not in remission yet, but yes, for sure I will still be watching my trigger foods. If I can eat them without pain then I may add some things back in once in awhile, but they will be limited.

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

I did keep a food journal while working with my trainer when I first got sick, but I could have figured out what foods were setting me off without having kept it.

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

I guess I'm doing both? I take meds since I'm still in mid flare and have an absess, but at the same time I do whatever I can food wise to make sure I'm healthy.

11. Do you believe treating with diet alone is safe? Why or why not?

No. I think things can be managed through diet alone, but I don't think anyone should rely on diet alone to treat an illness. Sometimes medications are needed.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

N/A

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

We have not discussed it past "Don't eat it if it hurts you".

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

If I planned on treating with diet alone and my doc was not on board, then yes, I would find one that was.

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

Yes, but I don't do it enough to notice an impact. Maybe once a week, or once every two weeks.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

Google!....mostly online, though I have also read a few different books.

17. Do you believe exercise and fitness play a role in treating IBD?

Yep. The better we treat our bodies, the better we'll feel. Sitting around on the couch all day isn't going to help anything.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?

I did before, and I will again. Right now no, because its just not an option. I do try and keep busy all day and do light exercise like walking, with 3 kids keeping active is not an issue.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

I just started taking probiotics and haven't noticed a difference yet. And I've been taking iron supplements for over 10 years with very little effect.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

At this point, no, I don't maintain my fitness by any other practice.

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

None. I really can't think of much to change.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

It has impacted my social life. I never now how I'm going to feel, so I have a hard time making plans to go out and do things. It seems like life changes day to day, and we tend to do things at the spur of the moment instead of planned out. "I feel good, lets go do....." I haven't left town in 9 months, and I really don't want too. Even thinking about going to stay with my IL's where I have no control over what I eat, and I know I won't get enough sleep, is a scary though.
__________________

 

[shamrock15]

Here goes...
1. What form of IBD do you have? When and at what age were you diagnosed?

I was diagnosed at the age of 18 with crohn's in the terminal ileum. Since then, they have added crohn's colitis and a hiatal hernia. At that point I had symptoms present for almost a year.

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

I believe my first symptoms came when I was approx 5 years old. They lasted about a year, then went into remission. At that time, I had frequent vomiting, a lot of diarrhea. My mom told me at the time they believed I had possible appendicitis, but it never fully formed. The reason I believe that was an attack was a very particular odour that I recognized during an attack in my mid-30s. When I was diagnosed, I had severe weight loss, severe rectal pain and abdominal pain, and occasional bleeding. Small bowel follow through showed the narrowing. No idea why it became active.

3. What medications have you taken for IBD? Please summarize your experience with each medication.

More pred than anyone should ever have - initially very good results, now it does nothing (oral form - IV still works well). I tried pentasa and asacol with absolutely no effect. 6MP used for seven years, and it seemed to have some effect that it eventually lost. Remicade for the last four years, and it is working beautifully with imuran.
*Edit* - forgot that I was in the trial group for budesonide - didn't help in the slightest.
4. Do you believe diet affects your IBD? Please explain why or why not.

Absolutely believe diet affects it. Veggies and spices can put me from healthy to pain in a matter of hours. Also, a strong correlation between meds that kill bowel bacteria and gas problems.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

Raw carrots, corn - completely avoid

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

Steak, ice cream, potato, fish,

7. What foods do you think of as being common trigger foods?

See above.

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

Absolutely.
9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

I did keep a journal, and it helped me isolate some of my triggers.

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

Never diet alone.

11. Do you believe treating with diet alone is safe? Why or why not?

For me, it wouldn't be safe. My disease has never responded that way. For others, it may be all that is required.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

Diet alone hasn't shown that much promise for me. After 25 years of tinkering with diet alone, it doesn't look like my way forward.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

Spoke with a nutritionist and my first GI about this, and both believed diet was part of a complete approach.

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

I did change GIs when I didn't agree with his treatment plan, but it wasn't based on his thoughts on diet.

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

Never tried.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

I had a really good book about IBD nutrition that I referred to extensively when I was getting used to crohn's. Other than going on low fibre, no real specific diet.

17. Do you believe exercise and fitness play a role in treating IBD?

I believe this is really important. It helps with keeping circulation up, blood formation, bowel movements, digestion, passing gas. Too important to ignore. I do find that if I exercise strenuously, it can cause some problems such as increased and fluid bowel movements. Not sure if this is due to the exercise itself, water intake or the stress. Maybe all three?

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?
I do - skating, swimming, cycling. Used to be a hockey referee and player. It helped a lot with pain tolerance too!

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

Vitamin D, B12 shots, and just started a chewable multivitamin. I can't say I notice much impact from the B12, but I know it's necessary. The other two do seem to have some effect.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

Nope.

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

Regular sleep hours - I noticed at work and when my daughter was young that this affects me just as much as food.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

It took all the fun out of being a teen. Last thing you need as a pimply faced kid who was already self-conscious is a disease that makes you fart, puke and possibly soil your underwear. Took me a decade to realise that I just needed to change my outlook if I was going to get anywhere in life, especially with this disease. It kept me from working at a meaningful job for almost as long.

Hope this helps!
__________________

 

[guest78]

1. What form of IBD do you have? When and at what age were you diagnosed?

Crohn's disease, diagnosed in 2009, aged 16

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

About 6 months before diagnosis. I thought it was due to stress. And was more of a nervous tummy.

3. What medications have you taken for IBD? Please summarize your experience with each medication.

Pred - been on it 5 times. Each time has worked rather quickly until this last time where it has not put the Crohns in remission. Have awful side effects from it.
Infliximab - worked for 3 courses of it. But I kept flaring very time.
azathioprine - on maximum dose and no longer holds Crohns
Humira injections - worked beautifully for 2 years. But ha an awful flare, upped dose ad no longer works.
Asacol and pentesa

4. Do you believe diet affects your IBD? Please explain why or why not.

Yes. Lactose makes it a lot worse. As does greasy food.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

Lactose products
Take away pizzas

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

Everything else.

7. What foods do you think of as being common trigger foods?

Lactose products. Raw fruit and veg.

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

Yes. Avoid completely.

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

No

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

No.

11. Do you believe treating with diet alone is safe? Why or why not?

I think it's safe.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

I think you have to be incredibly disaplined. Which I would really struggle with.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

She just told me to avoid trigger foods.

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

Unsure

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

No

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

This forum mainly. Internet research.

17. Do you believe exercise and fitness play a role in treating IBD?

When in remmission definitely. Even if its not for physical symptoms then definitely for your mind!

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?

When in remmission. Yes 4 times a week. Definitely improves over all health.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

Calcium due to pred

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

No

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

Meditation ad relaxation. Which 100% has helped relax and soothe the Crohns and help me deal with pain and anxiety.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

Massive effect when I am unwell and generally house bound. I can't go out and see friends, exercise. Changed my life hugely.

 

[KWalker]

These are all my own answers but I quoted somebody for the bolded questions



1. What form of IBD do you have? When and at what age were you diagnosed?
I was diagnosed with Crohn's at the age of two. Currently 23 years old

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

Being diagnosed so young I don't remember when I started to have symptoms but doctor's originally thought it was a lactose intolerance.

3. What medications have you taken for IBD? Please summarize your experience with each medication.
Prednisone
Cipro
Flagyl
Remicade
Humira
Methotrexate (orally and injections)

4. Do you believe diet affects your IBD? Please explain why or why not.

Being somebody who currently uses diet as a treatment I can definitely say it affects IBD. No medicine has ever stopped my diarrhea and not even two weeks after starting the SCD diet my diarrhea went away.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

This is hard to tell because I went from eating anything, to a strict diet over night so I can't rule out any select foods but the foods I do eat (SCD) seem to all be safe

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

Same answer as above


7. What foods do you think of as being common trigger foods?

Spicy foods, fatty foods, milk

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

Yes. Sometimes I do "cheat" on the diet but I do avoid processed foods and foods with ingredients that aren't natural. 99% of the time I don't eat anything with additives or preservatives.

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

I did but I used it for tracking calories and I ended up skipping so many times that it wasn't useful.

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

I have been medication free for 3 years now and treating my crohns with the Specific Carbohydrate Diet. I chose this treatment after researching online and finding lots of positive results. I've always been somebody to choose a long term treatment rather than taking medicine as a "quick fix" and I also do not receive any negative side effects like many do that take medicine. I believe the diet has been very successful. I feel healthier overall, my BMs have improved and I don't feel like I have crohns.

11. Do you believe treating with diet alone is safe? Why or why not?

I think this depends on how dedicated somebody is to sticking to diet. Many people think that you can eat healthy most of the time and that will be good enough but diet takes a lot of commitment. Unfortunately there are a lot of people with negative attitudes toward diet because it doesn't get researched a lot and many people do believe that medicine is the only way.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

I have used diet.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

I have and he was completely against it, like most doctor's are.. Without prescribing medicine they don't make money and they aren't trained in diet so I wasn't surprised. He's no longer my doctor.

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

I fired my doctor because he would only continue to see me if I took his medicine of choice (Imuran) and I refused and he didn't believe diet had any effect on crohns.

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

I make smoothies which is similar but just a different consistency. I don't know if I notice a difference but they are delicious and refreshing. I make smoothies every single day.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

Breaking the Viscous Cycle book, pecanbread.com, btvc.com, etc.

17. Do you believe exercise and fitness play a role in treating IBD?

I think just getting up and becoming active has great benefits on the body and therefore allows us to feel better and even relieve some symptoms from crohns. Unfortunately a lot of people today spend a lot of time in front of the television and you can usually tell just by looking at somebody whether they are active or not. In most cases, it's the people who do exercise that feel healthier than those that do not.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?

I do yoga twice a day (30 mins morning and night) and I walk A LOT. I have slowly started jogging but that takes a little bit to really get used too. Similar to my answer above, by doing exercise I just feel better overall which gives me better mental health and therefore I feel my crohns gets pushed aside.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

I take psyllium fiber. It also helps with colon cleansing and preventing diarrhea.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

Not quite sure what this question means

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

I am healthy enough that I live a completely normal lifestyle. I think crohns has definitely made me my conscious about the things I do and has made me choose a healthier lifestyle

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

Umm, yes and no. No in the sense that it prevents me from doing things, but yes in the sense that I am "in the closet" about my crohns. I have never told any friends about my crohns because I don't want to be treated differently or seen solely for the "disability" I think it has also helped me in a way that I am more forgiving/consoling when a friend is feeling down and because I know what's it like to be sick, I feel like I am more understanding towards others.

 

[helena101]

1. Crohn's. Diagnosed june 2011 at age 36.
2. Some mild symptoms in previous years, but so mild as to go unnoticed (bloating, slightly more frequent BMs, one episode of blood in stool). I had a miscarriage in march 2011, things got noticeably bad soon after.
3. Antibiotics: ciproxin, flagyl. Budesonide and asacol. I did fine with all 4 medications and did not notice any side-effects. The asacol did cause a temporary drop in platelets to below normal, but this normalised quickly.
4. Yes. Too much fiber has a noticeable effect. I can tolerate 2 portions of fruit, 2 veg, 30grams nuts, 50 grams oats all in one day, preferably spread out. Any more than that and I start to get gas, bloating and softer BMs. High fat or lots of alcohol or caffeine also are no good for me.
5. Coffee and milk. At the moment I avoid them completely, but I will experiment again to see if I can tolerate a limited amount.
6. Chicken and rice.
7. Milk, dairy in general, coffee, beer, gluten grains, corn, yeast, nuts, onions.
8. Yes
9. I have kept a food diary and it is very useful for identifying trigger foods if you have any.... I am not 100% convinced that I have any, I imagine that when I try coffee and milk again I won't have any trouble with them, but I could be wrong...
10. I have used elemental diet and Prof John Hunter's elimination and lofflex diets in conjunction with mesalazine. It has been successful in keeping me in a solid remission over the past two years, and helped me to avoid stronger medications (azathioprine and remicade) which were initially recommended for me upon diagnosis. Even though I am not completely free of medication, it has been very successful. I chose this treatment option because the idea of lifelong dependency on drugs is frightening to me, and I would rather be on a diet, no matter how difficult, if it could help me to avoid that.
11. I personally would not have been comfortable treating my crohn's with diet alone without the help of a doctor, or at least without an experienced expert (nutritionist or holistic doctor) to guide me. It is difficult to know how much patience you should have with a diet when symptoms aren't resolving. If you are on your own you may give up too soon, when the diet just needs a little longer to kick in. Or, worse, you can wait too long, and some real damage can be done to your insides. If I were to treat with diet alone and with no doctor's help, I would do very frequent monitoring of bloods, faecal Calprotectin levels. If inflammation and/or symptoms didn't seem to be improving within 3-5 months I probably would be afraid to continue...
12. N/A
13. I have two GI's, one in the UK (Prof Hunter) who believes diet is very important, more effective than drugs, and a local GI in Greece who does not think diet is very important.
14. Most GIs would probably disapprove treating with diet alone. But I think if you can find one who doesn't it can be a great help. I would at least try to find a GI who would agree to monitor me and run the necessary tests.
15. I don't juice, but would like to start.
16. Internet, books.
17. I don't really feel fitness plays a role in the treatment of IBD itself, but it helps with the psychological part. Having goals, feeling physically strong, helps me not feel so much at the mercy of crohn's, helps me forget I have a disease, and helps with the fear and depression that can come with chronic illness.
18. I exercise regularly, often too much. Exercise helps me to feel well in general. Over-exercising can sometimes be a problem for me, and I can burn myself out, which I think is bad for IBD.
19. No
20. No
21. Was a very light smoker before IBD, I stopped when I was diagnosed. I try to make time to relax and pace myself more, so that I am not always stressed, rushing and exhausted.
22. Yes, my diet has been very difficult for the last two years . (The elimination diet starts with you introducing one food at a time for 4-7 days before proceeding to the next food.) This means that I am only now able to sort of participate in social eating occasions (as I still haven't tested EVERYTHING). It also means that I have been unable to travel, as I cannot control my own food easily in that situation. I can't say I have really minded either though, because I did not view it as a permanent change, and already I am almost "normal" insofar as what I can eat and what I can do. Of course there have been many times though over these years where I have felt a little depressed at not being able to join in...

 

[kh216]

1. What form of IBD do you have? When and at what age were you diagnosed?
Mostly Crohn's colitis and a little bit in the terminal ileum. I was diagnosed with it when I was 17 years old.


2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?
I experienced symptoms when I was a teenager. In my case, I believe it was genetic because I have cousins who also have the disease. I also remember it being triggered by eating steak.

3. What medications have you taken for IBD? Please summarize your experience with each medication.
Azulfidine – It helped me throughout my teenage and college years. It no longer works for me.
Prednisone -Helps me get out of a flare quickly. However, I don't like the side effects. It makes me gain weight and have a fact face. I also believed it was a factor in me getting osteoporosis.
Pentasa – Completely useless.
Asacol and Asacol HD – Helpful but not effective enough alone.
Lialda – Just started this recently. Same as Asacol and Asacol HD.
Azulfidine- Very helpful and effective.
6mp – Very helpful and effective. However, I am currently having a problem with lowered white blood count because of it.


4. Do you believe diet affects your IBD? Please explain why or why not.
Yes. Certain foods aggravate me and they can cause pain and either constipation or diarrhea.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?
Steak (try to avoid)
Bagels (try to avoid)
Whole grain foods (try to avoid)
Raw Pineapple( try to avoid)
Leafy vegetables (limit)
Milk – cow's milk

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them. Chicken, turkey, bread, potatoes

7. What foods do you think of as being common trigger foods? Broccoli, wheat and whole grain foods, beans, milk and dairy products

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission? Yes.

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods? No.




10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience? No, however, I do try to eat a low fiber, low residue diet

11. Do you believe treating with diet alone is safe? Why or why not? I don't know if it is safe or not; I just don't believe it is effective without medication.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone? Not much with this particular gastro doctor. I am sure that he would not approve of treating IBD with diet alone.

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice? No.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD? crohnsforum and different Internet websites.

17. Do you believe exercise and fitness play a role in treating IBD? Yes, I believe that when you are not in an active flare, I think exercise overall improves the health and wellbeing of the patient.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD? Yes. It may have improved my condition.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD? Yes. Flax seed oil pills, multivitamin, Vitamin D pill, calcium pills, Sublingual B-12 and probiotics - I have definitely noticed an improvement when using probiotics.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD? Lately I have been doing a yoga class. I find it very relaxing but don't know if it has any impact on my IBD.

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them? I try not to take on jobs that are too stressful.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being? I can't do anything too strenuous.
__________________


Sarah.
Diagnosed with Crohn's disease

 

[CrohnsChicago]

1. What form of IBD do you have? When and at what age were you diagnosed?

Crohn's-Colitis, Diagnosed 2012 at age 28

2. When did you begin experiencing symptoms? Do you have any theories as to what caused your IBD, or caused it to become active at that time?

I began experiencing typical flare symptoms towards the end of 2011 and full blown symptoms at the start of 2012.

3. What medications have you taken for IBD? Please summarize your experience with each medication.

Prednisone - Used at the onset of multiple flares and presently to help hold me over until 6MP kicks in. It is the only medication thus far that has been able to stop the bleeding going on in my colon. It worked a lot faster the first few times I was put on it (within a day or two). More recently, it took a lot longer for the medication to kick in however the side effects are always immediate and terribly bothersome, but tolerable (hunger, moon face, irritability, mood swings, insomnia, aggression)

Asacol - used as a maintenance drug however it has not been able to successfully achieve this all on its own. So now I use it in combination with 6MP with the intention of getting off of the Asacol once we figure out if the 6MP works. No noticeable side effects. Have been on this drug since diagnosed.

6MP - Taking since February 14, 2013. Still waiting to see if it will work to push me into and maintain remission.

Entocort - Did not work. Caused INTENSE and constant bloating, gas, cramping pains. I lasted a week on this medication before being switched back to prednisone.

Flagyl - took this as it was believed that I might have had an infection making my flare worse. After two weeks we realized this was not the case but I was kept on the medication for a little over a month because my GI did not want shock my body by continuously switching my medications within such a short period of time.

4. Do you believe diet affects your IBD? Please explain why or why not.

I do believe MY diet contributes to MY symptoms; depending on what I eat, how much of it I eat and how frequently I eat it. It affects me more when I am dealing with a flare. Certain foods worsen my flare by causing extra pain, bleeding, cramping and urgencies.

5. Do you have any known trigger foods? If so, please list them. Do you completely avoid these foods or do you limit them?

Broccoli is a trigger food. I completely avoid it. Milk and too much dairy is a trigger as well. I avoid certain types of dairy almost entirely and eat other varieties of dairy in moderation.

6. Do you have any known safe foods (foods that have never aggravated symptoms)? If so, please list them.

Known safe foods are greek yogurt, white rice, salmon, chicken, mashed potatoes, eggs, applesauce

7. What foods do you think of as being common trigger foods?

High fiber, high fat, heavily processed foods.

8. Do / would you still watch what you eat / avoid or limit trigger foods while in remission?

Yes.

9. Have you ever kept a food journal? If so, how useful was this in identifying trigger and safe foods?

I have not kept a food journal.

10. Have you ever used diet to treat your IBD? If so, did you use diet alone or in conjunction with medication? What diet (if any specific diet) did you use? Why did you chose this treatment option? How successful was this experience?

Yes, in conjunction with medication. I actively try to incorporate a clean eating diet into my daily routine. I believe highly processed foods contain additives, preservatives and chemicals that our body was not meant to digest. It is very successful in eliminating discomforts because I am cooking food from its most natural state.

I periodically juice and use smoothies to give my gut a break from digestion and to try and more easily absorb nutrients. I always find this a successful try.

11. Do you believe treating with diet alone is safe? Why or why not?

I have mixed feelings about treating diet alone. I do not believe it cures the disease as there is no one diet that consistently helps patients. There are many varied diets that can either help a patient, do nothing for a patient or make them feel worse. However I do believe that a proper diet catering to your specific symptoms can help to ease symptoms and provide your body with essential nutrients that you lack as a result of the disease. These essential nutrients act to repair some of your cell function and immune responses.

12. If you have not used diet to treat your IBD, would you be open to doing so in the future? Please explain why or why not.

n/a

13. Have you discussed diet with your gastroenterologist? If so, do they believe diet affects IBD and do they approve of treating with diet alone?

I have discussed diet with my GI and while they do not believe it to be a cure, they do not discourage me from my clean eating and juicing lifestyle in conjunction with medication.

14. If you do, plan to, or would consider treating with diet, have you or would you change gastroenterologists if they disapproved?

I would consider changing GIs if (1) I chose to treat ONLY with diet and they did not approve.

I would also consider changing GIs if (2) I chose to use diet in addition to medication as a treatment plan and my doctor did not approve of/greatly discredited the diet aspect.

15. Have you tried juicing? If so, have you noticed it to have any impact on your IBD? How often do you juice?

Yes, I juice periodically (a few times/week at most). It helps me cleanse out my intestines, gives me more energy when I am flaring because I am giving my body an easier way to try and absorb essential nutrients. It also allows me to gain nutrients without having my gut work as hard as it would if it were breaking down solids.

16. What sources do you use to find information on diet in general, specific diets, and/or the relationship between diet and IBD?

I use Crohnsforum.com, various food blogs centered around diet and IBD, clean eating, vegetarianism, gluten-free, mayoclinic/webmd, CCFA, and other random sources through Google.

17. Do you believe exercise and fitness play a role in treating IBD?

Absolutely, yes.

18. Do you exercise regularly? If so, have you noticed it to have any impact on your IBD?

When I am not flaring, I attempt to make a regular routine out of exercise. It has a positive impact in regulating my bowel movements, easing abdominal discomfort, increasing energy/focus, and limiting my frequency of illness which can in turn aggravate or cause the onset of a flare.

19. Do you use any supplements? If so, please list them. Have you noticed this to have any impact on your IBD?

Yes,

Fish Oil - I find the fish oil soothes my gut pains and discomforts.
B12 - Increases my energy levels lost with IBD.
Vitamin C - Enhance immune system, reduce length of illnesses (colds, flus) that in turn aggravate my IBD symptoms
Vitamin D - No impact known.
Multivitamin - Increased energy.
Calcium - for bone health. No overt impact known.

20. Do you maintain your fitness by the use of any other practices? If so, have you noticed it to have any impact on your IBD?

I use mindfulness meditation / MBSR (Mindfulness Based Stress Reduction) to help control stress levels. Increased stress levels cause abdominal discomforts and even urgencies.

21. Have you made any other lifestyle changes because of your IBD? If so, what changes and what prompted you to make them?

I have decreased my alcohol consumption. This was prompted as I noticed frequent consumption of alcohol and at high levels encouraged flare symptoms. However fewer and less frequent consumption practices do not bother.

Also, my new medication 6MP requires significant use of my liver to break down the medication. I reduced my alcohol consumption to not overtax my liver.

22. Has your IBD affected your social life? If so, how? Do you believe this has a negative impact on your overall well-being?

Yes, both negatively and positively. Negatively it has limited my ability to partake in food/drink gatherings with friends and associates. I have learned who is supportive and who is not and have had to re-evaluate my relationships with others.

Positively it has helped me to weed out people whose habits are no good for my own health. I am learning to partake in healthier activities and am attempting to build a new social circle around this healthier lifestyle.

 

[SarahBear]

Thank you so much, everyone!

 

[tots]

Ok, let's see how well I do remembering!

1) I was originally dx with CD in my illusion. (It has since appeared in my lrg bowel)

2)I can remember having symptoms as young as 4-5 yrs old. Most likely diet at the time.
A lot of fresh fruits, vegetables, salads etc.

3)Imodium, Bentyl,Levsin,Donnatal,Librax,Asacol,Pentasa,Prednisone,Entocort,Hydrocodone,Remeicade currently on Humira and Vit D. (I will edit this as I remember the names of others)

4)yes, sadly if I ate the way I used to and want to I would be sick everyday. Fruits, veggies, salads, whole wheat bread- causes severe pain and diarrhea.

5)Avoid salads and cherrios will get me everytime.

6)Pasta and rice.

7)oranges,pineapple,wheat bread,carrots, anything with pepper!

8)yes I do but, every once in a while the devil sneaks in with a few bites of salad! I pay the price.

9)no I have not, my triggers are very obvious.

10)I did by virtue of the fact when I moved my new Dr wanted to take me off all meds and "prove" my Crohns I did my best now I have it in my small AND large bowel. He won I lost.

11)no I don't, you can't see what's happening and progressing inside.

12)I use it in addition to medication.

13)my Dr is on the fence on thAt one the bet I can tell. The CD clinic at UCLA didn't believe food had much to do with it as the fed me a salad while I waited. Didn't go back.

14)I don't see that as an option in the foreseeable future.

15)no I have not. Thought about it, kinda.

16)I have only briefly looked here this go round ( this flare)

17)I think the best physical shape you are in the better you are able to battle any disease.

18)no I don't, dont but I would like to start.

19)vit d and probiotocs. I don't feel as bloated, probiotocs?

20)between work and getting Steven to justify at night, I am to tired and not feeling well by that point. remission is right around the corner. I know it.

21)actually my stress level has gone up and I went from not working to working full time.

22)there are social and work events that are hard for me esp at night.

I hope this helped


Lauren