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Hey everyone! I was diagnosed with Crohns Disease in April this year, and haven't started taking any medication yet for it. All of the medication just seems so harsh, and I feel like none of them actually help the problem, they just mask the symptoms. As much as I would love for the symptoms to go away, I think it would be better to try something out that could potentially remove the symptoms as well as all of the problems and inflammation going on. I've decided to start a restricted diet, cutting out lots of sugars, dairy, gluten, grains, soy, and many carbs. I was wondering if anyone has tried this instead of medication, and if you had any success?

Also, I will be posting all of the different crohns friendly recipes and my bodies reactions to them all on my blog. I highly suggest that you check it out!
www.courageandguts.wordpress.com

Reply posted for kristendwyer.

Hey do you have an update? New blog?

 Reply posted for fetzkorn.

I was diagnosed with Crohn's in 1988 and have had 3 resections. There was a time when I was down to 104 lbs. After my last surgery in 2009 my gastroenterologist insisted I use Humira. I got side effects and he put me on Cimzia. I didn't like giving myself the shots and it wasn't fully covered by my insurance. I also got the side effects with this medication. I was taking along with azathioprine which is very dangerous, they say. I stopped the Cimzia and started taking probiotics. I take one called Primal Defense which was created by someone who was on his death bed with Crohn's and created the probiotics along with supplements and diet. He is now fine. No doctor ever told me to do any special diet. If I would ask they would say no. Recently my Gynecologist suggested I try a supplement called Intest Restore along with the probiotics and the Paleo diet. I have been reading, researching and studying labels of foods. It's exhausting! I changed to another gastro dr but he wants to put me on remicade. I am now looking for a GI dr who supports natural treatment and paleo type diet. I am also trying to find a nutritionist who deals with Crohn's and is covered by my insurance. I can tell a difference since I started the paleo. I have also learned there is a diet called AIP - auto immune paleo. Which I am going to try to follow. I am learning alot of things that I was never told by any doctor and don't want to take the remicade or any other biologic medicine. I also hope to be able to get off of the azathioprine as I have been on it for many years. It's very confusing and hard to know what to do. I have found reading your posts very helpful and encouraging. I also just found out that my insurance will pay for nutritionist and don't understand why no doctors recommended them. I have always just been eating what I want and was resigned to the fact that I would just have problems. As that is what the doctors led me to believe.

 Reply posted for kristendwyer.

Good Supplements:
Quercetin
Fish oil (Carleson's Super Omega-3 is best) 1 g/day when healthy, up to 4 g/day when having a flare
Now brand B-50, D-Flame, Liquid Multi-gels, and vitamin D3 drops in MCT oil

Typical day of eating:
Breakfast: 1/3 c oats, 1/3 c water microwave 1 min, 1/3 c walnuts, 1/3 c blueberries-fresh or frozen, 3 heaping spoonfuls Stonyfield plain lowfat yogurt, 1 farmer's market egg if I'm hungry.
Lunch: Amy's burrito with whole wheat tortilla, pinto beans, and cheese. 1/4 c roasted salted almonds. an apple or orange.
Dinners: all homemade
Stir-fried farmer's market veggies with noodles or rice
Soup veggies & beans
Bean burritos or whole wheat tacos

I just had a flare and I fasted with only water for a whole day. By the third day I was completely well.

I hope you start feeling lots better!

 Reply posted for george mills.

Yes, I have been relatively healthy now for 20 years. I was diagnosed with ulcerative colitis in 1992, which a better doctor changed to Crohn's in 1997. With her help, I have not had any hospitalizations, and only occasionally have taken prednisone, which helps get me back on track. I am a fish-eating vegetarian. I do not have any problems with whole wheat, only with processed foods. Try eating as much fresh, local (but cooked) vegetables as possible. Local seems to be more important than organic for me. Any food that has been treated with sulfites is a very bad problem. This includes bagged salads, salad bars, crudite platters, dried fruit like apricots (except specifically sulfur-free), wine, beer, restaurant corn chips. See About.com for sulfite containing food. I find good vodka to be easily tolerated in moderation. I do not drink milk or any substitutes, but I do eat plenty of plain yogurt and a variety of good cheeses. Also, Bubbies kosher dill pickles and saurkraut, and kombucha are good sources of pro-biotics. I do not drink coffee any more since Dave Asprey says that 92% of coffee is contaminated with mycotoxins from molds. I drink green tea all day. I avoid sugar, except in 85% dark chocolate, which is medicine in moderation! Do not avoid salt, especially if you have diarhea because you are losing plenty of salt. 

 Reply posted for patcee74.

Hey I went through the same cycle and thinking bread was the only thing I could eat and that raw vegetables/salads were making me sick.  Unfortunately, when your intestinal track is "sick" what you eat today could be what causes you to be sick tomorrow.  I have learned that bread/gluten is the enemy.

I was diagnosed with Crohn's 16 years ago and was on medications everyday up until about 2 years ago when I stopped taking them because I felt like I no longer needed them.  I started seeing an alternative medicine doctor when I had reach a point where I thought I was going to have quit working I was so sick. I was taking anywhere from 12-15 pills a day. He took me off of gluten, dairy, soy, caffine, sugar, red meat, and of course fried foods.  I was allowed to eat rice, potatoes, whey, millet, flaxseed.  I did this without cheating and was significantly better in 3-6 months time.  After about 9 months I started introducing things back in one at a time to see what my triggers were.  Now, 8 years later, I can eat about anything I want too within reason.  As a rule I avoid all those things listed above completely.  If I do cheat I only do it for a day or two and then make sure I have at least 5 "clean" days in a row.  I had a colonoscopy about 2-3 years ago and the doctor said everything looked perfect. 

Try eating only cook vegetables for 3-6 months and give yourself time to heal.  Then introduce the raw vegetables back in

Good luck!
Shannon

 Reply posted for kristendwyer.

kristendwyer

I was diagnosed with Crohn's 16 years ago and was on medications everyday up until about 2 years ago when I stopped taking them because I felt like I no longer needed them.  I started seeing an alternative medicine doctor when I had reach a point where I thought I was going to have quit working I was so sick. I was taking anywhere from 12-15 pills a day. He took me off of gluten, dairy, soy, caffine, sugar, red meat, and of course fried foods.  I was allowed to eat rice, potatoes, whey, millet, flaxseed.  I did this without cheating and was significantly better in 3-6 months time.  After about 9 months I started introducing things back in one at a time to see what my triggers were.  Now, 8 years later, I can eat about anything I want too within reason.  As a rule I avoid all those things listed above completely.  If I do cheat I only do it for a day or two and then make sure I have at least 5 "clean" days in a row.  I had a colonoscopy about 2-3 years ago and the doctor said everything looked perfect. 

Good luck!
Shannon

 Reply posted for sunshinemom.

Hello, I was diagnosed with ulcerative colitis 4 about 4 years ago. I started out using Collazal, and was switched to Balsalazide, which I was told is the same thing. I have also used suppositiries at times. Those meds helped with bleeding but not with diarreha and urgency The urgency has been the most challenging thing in my day to day life. I am currently taking Humira, which to this point has not helped with the diarreha and urgency. Now trying to make drastic dietary changes. I stopped red meat entirely. No nuts or sugar. My next step is attempting to cut out meat entirely. Never ending battle!

 Reply posted for kristendwyer.

Hi everyone I am all new to this stuff I was just diagnosed with crons and colitis I was in the hospital for 2 weeks and I lost 45 lbs. they gave me remacade , steroids, and so many meds I felt like I was in another world. I'm out now back home and just trying to live a healthy life. I'm 37 year man. And I have to admit this was the biggest scare of my life.  Can anyone help with a good diet to follow.  Like breakfast ,lunch and dinner?  Thanks so much.  And I hope you all have a happy holiday and u feel good during. 

George

 Reply posted for crc1980.

My doctor has said if your bowel is inflamed it doesn't matter what you eat (IBD or Crohn's flare) but if you have IBS it does. When I had a colonoscopy the results came back from the lab as IBD but my doctor said; judging from his experience over many years. he thinks it is mild Crohn's. However, I have noticed that every time I have an episode of diarrhea I can trace it back to something I ate. For instance, if I eat a green salad for dinner, I am sure to pay for it the next day. Fruit doesn't seem to react the same, but raw vegetables do. Cooked vegetables are fine. I do best on carbs such as bread, white rice and potatoes, but I am also diabetic so that lets them out. Meat doesn't seem to bother me.  To me, it sounds more like I have IBS. The only pain I ever have is from gas pains with the diarrhea. I do not take any medication. Do you think I should see another doctor to try to get a more definite diagnosis?

 Reply posted for milk lady.

Do you mean you were advised to drink goat's milk as a treatment for Crohn's or just to replace cow's milk? I have been avoiding milk because it causes diarrhea. Do you have that symptom with goat's milk?

 Reply posted for kristendwyer.

UPDATE: I have continued the restricted diet. Staying away from gluten, processed sugars, and dairy. I notice a difference when I eat something with dairy, the next day usually I don't feel good and will have diarrhea. I have been letting myself eat gluten every once in a while, but have been staying away from sugar unless it is natural sugar that is in fruit and stuff. A good alternative to sugar is coconut sugar and maple syrup! My CP level went from over 1000 to 700 in a few months just from changing my diet, and I just started Low Dose Naltrexone, so I am hoping that my inflammation levels will lower faster. I don't know if the diet has been helping a lot, but it makes me feel better and I know that I am healthier with these changes. 

 Reply posted for sunshinemom.

wow i agree on some of the post i have colitis some of the med is harse and some foods i have lost pretty much weight my whole life style is hard to deal with 😥

 Reply posted for kristendwyer.

raw goats milk    I sell to a lady with Crohns and she says for the first time in two years she has no more tummy aches.  She said her doctor has been telling her for two years to drink goats milk
.
 
 

 Reply posted for kristendwyer.

How did you all find your food sensitivities? I have tried cutting out foods but have not been able to figure it out since my stomach is not usually affected until the next day...or later.   The other issue is weight. I lost a lot of weight by cutting out so many foods.
I am not on mediation, but am thinking about it because my symptoms are getting worse.

 Reply posted for kristendwyer.

Hi Kristen,

I understand where you are coming from. Some of the medications that are prescribed for Crohn's or Colitis are very strong and have many side effects. 

I've had Crohn's and Colitis for 4 years. My symptoms became serious about 2 years ago and I got very sick. I lost 30 lbs. I weighed 135 before I lost the weight. What I found was that eliminating trigger foods from my diet (for me this would be dairy, beef and fried foods) made a noticeable difference in the severity of my symptoms. I had fewer visits to the rest room and the symptoms of urgency  improved. 

I still need to take a medication.  I take Humira to manage the inflammation and avoid damage to my intestines. I've experienced few side effects and feel great (considering). I still watch my diet and it helps.

I recommend identifying the foods that trigger a reaction and eliminating them from your diet. From there, you could reassess your need for medication. Even if you have to take a medication, controlling your diet may supplement the benefits of the medication. Also, you may find that if you take a medication, you may be able to tolerate some foods that you could not tolerate before.

Good luck!

KF

 Reply posted for kristendwyer.

HI,
  I just want to encourage you in your endeavor to use diet as a treatment.  My son went on a elemental formula diet and his blood work was normal in just over 2 months.  He does have a little food but it is carefully chosen.  Once he has been in remission a while, we will start adding foods one at a time.  I am big on probiotics.  He is gluten and sugar free for the most part and much of what he eats is organic.  I also avoid feeding him high histimine foods as they trigger the immune system.  Some of theses foods are onions, chocolate, tomato, processed meat, vinegar.  Also, freeze your left overs and rewarm instead of refrigeration.  There are so many diets out there.  I think finding what works for you and sharing it is a great idea. 

 Reply posted for hairymary.

I found diet very helpful, too. I use a blood test through ELISA ACT that tests over 500 items (foods, preservatives, additives, molds, pesticides, medications, animal dander, etc) and all three immune response pathways for a delayed reaction (I.e. Not like peanut allergy where your throat constricts on the spot, but get symptoms later). I have been very stable and functional on it for 6 years (I re-test about every 2 years since leaky gut caused by Crohns means you can develop new sensitivities--as well as drop some off as you have been off them). Every time I cheat or make a mistake my symptoms have returned. My GI told me as long as I wasnt in pain I was doing okay. I recently waited too long to re-test ($), so have added acupuncture, probiotics, and pH neutral vitamin C and those have helped, too. Id really encourage anyone to do this blood test (and get the free interpretation of the results--huge help in identifying sources of exposure). Id say after I was diagnosed it tookabout 6 months to fully take effect, but I was seeing improvements along the way. It may take less or more time J think deepening on how much inflammation youve got. If you have a doctor in your family, they can order it for you at a reduced price. There are a lit if things this test identifier for me that I would never have figured-out on my own--like being sensitive to pesticides, or molds...Good luck! One of my friends who had been on every drug and surgery said managing by diet was the first time shed felt hope.

 Reply posted for kristendwyer.

Reply for Kristen

I too was diagnosed earlier this year at 28. I have mild-moderate crohns and have chosen not to use medication, but to  put myself on an SCD/ Paleo diet with the help of a holistic doctor. 

What has your progress been? I agree that when flare ups strike, every food irritates me; not just the starches, lactose, sugar and processed things that the diets require. I'm happy to continue the diets because they are so healthy and benefit us beyond our IBD. HOWEVER, I've started to consider anti-inflammatory drugs for my flare ups so that i don't get any intestinal damage. 

Let me know how you're doing!!

 Reply posted for kristendwyer.

I have had Crohn's for 18 years.  I have tried the following diets, each for 3 months at least:

Vegan
Whole 30 (Grain-free, sugar-free, dairy-free, preservative-free, salt-free, legume-free paleo)
FODMAP (IBS specific diet for restricting short chain sugars)
Carbohydrate-free
Fruit & sugar-free
Dairy-free

Here's what I found:  

Starches, meat and jersey cow milk makes my gut happy.  Most vegetables put me in pain.  But nothing except biologics and surgeries have kept me and the two other members of my family with Crohn's as functional members of society.  

Good luck to you!

 Reply posted for gcrawford.

Hello. I have just joined this forum. I have Ulcerative Colitis and several years ago decided to go the diet instead of medication route. A combination of diet, vitamin supplements, herbal medicines and reducing stress levels is working extremely well for me. The diet is very restrictive as I have given up things like beef, pork, chicken, dairy, wheat and gluten. All of these things cause me pain and bleeding so that stops me from missing them too much. I have also had to seriously cut down on my alcohol intake, as too much also causes bleeding and many quick dash to toilet the day after the night before. If you are happy to be restrictive with diet and also take the supplements and take steps to reduce stress and control emotions, it may work very well for you too. I suggest making an appointment with a naturopath who has prior experience with IBD and take it from there. It is also a long healing time. It took quite a few months to start seeing results, but now I can maintain remission as long as I am sensible and stick to the diet 100%. I only have problems when I stray.

 Reply posted for kristendwyer.


I've tried any number of diets, been on diets that some say are a 100% cure all my life and still have UC.  I've tried gluten free, I've been on a diet made for lactose intolerant.  Nothing help.  The symptoms aren't the inflammaton, it's the immune response of antibodies.  Changing diet is what is masking the symptoms instead of treating the immune reaction.

The drugs like the mesalamines are more like symptom relievers but prednisone stops the immune response.  It only does it to a certain extent, but the 6MP, Imuran's are one type of immune suppressant, and the biologics are others.  Those are exactly like you said, treating the disease and not the symptoms like diet.

Yes, some of those have potential big time side effects.  Some work for people, and some don't.  You have to find what works for you.

 Reply posted for brian55.

YES!  I became terrified of medications when I was on Humira for 2 1/2 years and noticed all the awful side effects and how it was ruining my body.  I have been in search of a natural healing path since then for the last 2 years.  I first tried the Specific Carbohydrate Diet, and that was helpful... I then added in Low dose Naltrexone which took away my joint pain.  Then I found my holistic MD who tested me for food sensitivities, heavy metals, parasites, infections, nutrienet deficiencies etc...  Since then I've been working on all of those things and feeling WAY better!!!  My diet is an anti yeast diet which is very much like the paleo diet except no sweet potatoes or vinegar...  I have modifications based on my current food sensitiviities and when I stick to it I feel very well!  I've also supplemented with many minerals and vitamins and I have SO much energy!  I had my silver fillings properly removed and my mercury levels went way down with a proper detox protocol. 

There are a lot of alternative therapies out there, but don't just try one on your own, find a professional with a great reputation and preferably an MD (to prescribe steriods etc in the case of an emergency).   Working with someone like that should help you immensely.  It is expensive, but worth it in my opinion.  

Also- to answer someone else's question about shakeology....  I have a friend who is celiac and it has made her immensely better.  I have checked out the ingredients and there are alot of healthful things in it.  The trouble I had was that all flavors except the vegan option had WHEY which I believe is dairy and  I am not allowed to hav ethat.  THe vegan option was chocolate and that is a food sensitivity for me.  BUT I believe it can have a great impact on some, worth a try?

 Reply posted for kristendwyer.

Hi. I have had Crohn's Colitis since 1990.  I had a total colectomy and  J-pouch anastamosis.  Until recently, I have only had 1 or 2 flares a year.  Now I can't seem to get anything under control.  I have been treated with medications for these flares (flagyl, cipro and entocort).  They help when on, but as soon as I go off, I get a flare again.  My doctor wants to start me on Remicaid, however I have reservations about it.  

I was recommended Shakeology.  It's a meal replacement drink that has pre and probiotics in it.  There are some blogs out there of people with IBD that have used it and swear by it.  I was wondering if anyone here has tried it and what your opinion of it is.

Would like to try "natural" over "chemical" treatments.

Thanks!

 Reply posted for kristendwyer.

Hi. I have had Crohn's Colitis since 1990.  I had a total colectomy and  J-pouch anastamosis.  Until recently, I have only had 1 or 2 flares a year.  Now I can't seem to get anything under control.  I have been treated with medications for these flares (flagyl, cipro and entocort).  They help when on, but as soon as I go off, I get a flare again.  My doctor wants to start me on Remicaid, however I have reservations about it.  

I was recommended Shakeology.  It's a meal replacement drink that has pre and probiotics in it.  There are some blogs out there of people with IBD that have used it and swear by it.  I was wondering if anyone here has tried it and what your opinion of it is.

Would like to try "natural" over "chemical" treatments.

Thanks!

 Reply posted for kristendwyer.

Hi Kristen,

I don't know where you are at in the disease state (mild, moderate, severe) but I was diagnosed back in 2006 and my disease was already chronic at that point.  I have scarring in the small bowel. I was very ill and hospitalized for 14 days within 3 weeks time.  I was put on steroids temporarily and then on to remicade infusions.  Which helped me greatly.  But two years ago i stopped responding to that and decided to take myself off of it (against my dr. wishes) and try a more natural approach.  At first it went well but this September it took a turn for the worst i have struggled with eating and keeping food in, throwing up quite frequently. IT now has spread to my large intestine where i now developed a fistula.   I landed in the hospital again in January for 4 days with NG tube in me...not fun. Juicing helps when i am in a flare but my dr told me i have to watch and I have been without veggies since then. I have to limit my intake so everything can heal.  I am still med free, taking steroids for now until I can get onto another medicine.  My suggestion is continue to do research but as explained to me the nature of the disease runs its course and the key is keeping down the inflammation and your stress levels so damage to intestines do not occur.  Good luck!!

 Reply posted for kristendwyer.

I find that lots of foods can aggrevate my UC symptoms when I have a flare, whether it be vegetables, grains, fibers or dairy.

I also have lactose intolerance so I don't eat much dairy anyway.

Not sure if that translates to Crohns


Good luck and hope you feel better

 Reply posted for kristendwyer.

When my daughter was dx w/cd I was in denial.  Eventually I gave in and started her on a very low dose/low tier drug.  Over time the flare past and I was determined dietary changes would be enough. Against our drs judgment, I stopped her medication.  Unfortunately her symptoms returned and it took twice as long to get back under control.  I am not a fan of meds, at least I know I tried:)