Crohn's Disease

Parent Q&A

  • Hi BPN,

    I am seeking recommendations on doctors for curing Crohn's disease and also recommendations on therapists who have experiences with patients with gastrointestinal disorders. Preferably in the east bay/south bay area. 

    I'm doing this on behalf of a dear friend of mine. She used to be able to eat everything, but after an unrelated major operation, she gradually became sensitive to a lot of food groups. Along with the Crohn's disease comes mental burden and self doubts. She's been seeing doctors and one therapist, but she would like to seek second-hand opinions on available treatments. FYI, she's been through fecal transplant in an oversea hospital but the results are not encouraging. 

    Please please please help her if you have been in the same boat and have any recommendations on doctors, therapists, alternative treatments, and face-to-face support groups. We all hate to see her wither day by day. I feel like she's not getting enough help and support with her severe symptoms, and would really like to provide her with more options. Thank you for your help!

    I have been very happy with my gastroenterologist Dr. Paul Chard, who has helped to manage my colitis. I didn't encounter the severity of symptoms it sounds like your friend has but he is incredibly knowledgeable, has multiple suggestions for coping with different symptoms and is happy to talk through details with patients who want to understand. I struggled with that last point with previous GI specialists in the East Bay and was relieved to find someone who will go into as much or as little detail as you want.

    Research is showing a strong link to Small Intestine bacterial overgrowth (SIBO, which can be triggered by surgery/antibiotics) and IBS/Crohn’s. Doctors often don’t test for SIBO, and many are unaware of the connection. I’ve been battling SIBO for several years (it took a long time to get a diagnosis), and just in the past couple of months have begun treatment with Dr. Kurupath, a GI doc. He’s amazing, and I would highly recommend him. Takes a couple of months to get in to see him, since he’s so booked. 

    I'm very sorry to hear this.  I have immediate family members with Crohn's, Ulcerative Colitis, Celiac, Eosinophilic Esophagitis, and severe food allergies.  In my experience these are complicated, variable diseases that change over time.  None of them is curable.  It can be hard to get a definitive diagnosis.  A treatment may work well for awhile, and then seemingly stop working.  There may be years-long periods of remission, and then the disease flares again for no obvious reason.  A drug that works miraculously for one person does nothing for another.  A food may show up on the allergy test, but cause no symptoms, and another food may test negative but clearly cause problems.  Very frustrating.  I definitely recommend seeking out specialists at UCSF -- I'm familiar with the pediatric GI, Allergy, and EGID clinics there, but I know there is an IBD clinic for adults as well.  The pediatric clinic has support groups so hopefully the adult one does too.  One thing to understand is that if your friend is taking a new medication to treat the Crohn's, it can take weeks and weeks for it to kick in (if it's going to work at all).  As far as alternative treatments, one that seemed to significantly help family members with Crohn's/Colitis is the Specific Carbohydrate Diet.  It's quite restrictive and can be time-consuming -- for five years I literally cooked every single thing we ate from scratch at home -- but it seemed to help bring a child out of a severe flareup and stay stable for several years when medication alone wasn't enough.  The website explaining it is www.breakingtheviciouscycle.info, and there are many recipes there and at www.pecanbread.org, as well as on lots of blogs -- just google SCD recipes.  The University of Massachusetts Medical School has an anti-inflammatory diet based on the SCD:   www. umassmed.edu/nutrition/ibd/ibdaid/.  We incorporated aspects of this plan into our diet with good results.  You just have to try things and see what works.  Probiotics are vital, although we found that a prescription probiotic called VSL 3 sounded promising but in our case just made things worse.  I now have everybody on Culturelle (over the counter), and kefir and/or kombucha also seem to be helping?  Hard to tell, but apparently not hurting.  We put a child on a liquid diet called Optimental for three months but it didn't help.  I researched fecal transplant as well as helminth treatment (worms -- ugh) but we didn't pursue either one, and recent clinical trial results for both have been disappointing.   Drugs that worked for awhile for various family members include Prednisone, Budesonide, Sulfasalazine, Lialda, Methotrexate, Mercaptopurin, and Humira -- all of these have side effects and/or risks but in the case of severe disease you may be left with little choice.  I realize this all sounds depressing (and it is, and I hope your friend finds a good therapist) but most people will have long stretches of remission and decent health -- one family member is currently a college athlete and spent the summer traveling abroad, so it's really not all doom and gloom, and there's new research all the time.  Good luck to your friend.

Archived Q&A and Reviews



Friend with Crohn's Disease

April 2008

I am looking for advice about how to help someone I know deal with Crohn's disease. I am particularly interested in finding out advice from anyone who has a moderate form of the disease, and if they have been successful augmenting/replacing traditional medical treatments with more non-traditional methods (diet/exercise/acupuncture....?) I am interested in hearing about any positive or negative experiences about their attempts to deal with this disease. Thanks in advance for the advice. anon


I have a moderate form of Crohn's Disease (female diagnosed in early 20s, now i'm 33). The disease tends to follow a pattern of quiet periods and flares, which have required more medical interventio. I have taken various medications to treat the inflammation including Pentasa, 6MP, and Imuran, the latter two of which have helped tremendously. I compliment the medical treatment with alternative therapies, e.g., acupuncture and supplements (fish oil pills, probiotics, raw Manuka honey). I have found that the alternative therapies alone are not sufficient for treating the disease, but that they work well in concert with the medications. My experience has been that life is generally not too affected or negatively impacted by the Crohn's disease, but there are periods when the disease is more active and therefore makes life more challenging. With a good physician (if in Berkeley, I recommend Taft Bhuket - 548-6555) and a good acupuncturist (also in Berkeley, I recommend Carla Dalton - 524-4812), the disease can be well managed. Best of luck! anon
I have was diagnosed with Crohn's 6 years ago and have been really lucky to have had just a few relatively minor flair-ups since then.

While I have stayed on my medication, I have supplemented that with acupuncture, pro-biotics (I take them in capsule form, but Keffir is also a great source of them), and exercise. There is also a really interesting book that has helped ''The Mindbody Prescription'' by John Sarno. I am pretty skeptical of this type of stuff, but it has been useful.

I would be happy to speak with your friend directly if he/she'd like. I have emailed my contact information to the moderator and told her to feel free to pass it along to you if you are interested.

Good luck. Crohn's Patient


A family member of mine has Crohn's. Not sure if I would describe hers as moderate but aside from medication, she has had good experience with probiotics. Also, nutrition for Crohn's sufferers has different issues. While you need to try to eat healthy foods, some things the rest of us think of as healthy can create more problems than they solve. For example, it can be better eat to eat white bread than wholegrain, and well-cooked vegetables rather than raw. There are some excellent books on diet if you look on the internet. Make sure you choose ones specifically about Crohn's and not just IBS. Good luck!
Start doing some research on celiac disease, also spelled coeliac. Crohn's and celiac usually respond quite well to a gluten-free, wheat-free diet, with the inclusion of probiotics (especially kefir). It's a huge pain in the neck, but you can adjust. There are many alternatives, but you have to read labels, because wheat, or grains similar to wheat (depending on sensitivity level) are in so many things. Many people have to give up not only wheat, but oats, rye, barley and spelt (an ancient wheat) as well. Over time (by this I mean several months, upwards of a year), some of these other grains can be added back slowly to see if the body can tolerate them. Some people can tolerate small quantities, and some have a less severe sensitivity after the many months it takes to regrow the dead cilia in the gut.

The healthier diet and regrowth of cilia will, over time, help tremendously with the IBS as the body normalizes.

To add to this, there is a method out there where you rotate your grains to have the same grain no more often than every four days (this tidbit comes from Body Ecology Diet, and has something to do with IGAs or something like that - it's something about cumulative buildup causing problems). Luckily there are many options out there in terms of both grains and carbohydrates. There is hope with a lifestyle adjustment

Hi...I didn't see your original post, but I have been living with Crohn's since I was 10 (I'm now 36), so if you were looking for advice about kids and Crohn's, I'd be glad to help. Also, I agree with the other response in regards to treating Crohn's with diet. I have had almost every medication there is for Crohn's and they never seemed to work well enough or for very long. I have successfully used the Specific Carbohydrate Diet, or SCD, (www.breakingtheviciouscycle.org -- or google it,) to treat my illness. Being on SCD enabled me to come off all meds and become pregnant with my son, now 18 months old.

I highly recommend using diet in combination with other ''alternative'' methods to treat Crohn's. Therapies such as biofeedback, acupuncture, meditation, homeopathy, ''biomedicine'' (vitamins & minerals, probiotics & other supplements, food allergy and sensitivity testing, etc.) have all been a part of my healing journey, and I feel that ALL of them have played an important role -- like pieces of a healing puzzle, they all need to be there to make it work.

Changing your diet is more than that, it's really changing your lifestyle, and it took me a long time to get where I am today in accepting the fact that I have to be so strict about what I can and can not eat. I try to think about ''eating to live'' and not, ''living to eat'' (I am a HUGE foodie,) and I have put my energy into creating delicious SCD meals and snacks for myself and my family, and it turns out I'm a really good cook and I enjoy it, too!

Anyway, if you'd like more advice and or information, I'd be glad to share my experiences and resources with you...email anytime.

I know what you're going through, julie


Recently diagnosed with Crohn's Disease

June 2001

I have recently been diagnosed with Crohn's Disease and am having trouble particularly with my diet. I have noticed that the Eat Right for Your Type diet is recommended by some doctors and when I have tried it, it really does help, but is an extremely difficult one to follow. Does anyone know of a support group in the East Bay or have any other connections that may be helpful for me? Any advice would be helpful since I am still very ignorant to the disease. Kelly


I know a woman who has this disease and she found the Chron's and Colitis Foundation of America to be a helpful resource. The national headquarters is in New York. They do research and offer educational programs and support services to people with these diseases. Their phone number is 1-800-932-2423 and their website is www.ccfa.org Good luck.
To the person needing a Crohn's disease support group. The Crohn's and Colitis Foundation sponsor support groups. The Berkeley group is currently on hold, but there are active groups in SF, Walnut Creek, and Pleasanton. Contact the CCF for details at 800-241-0758. Christine
I am sorry to hear of your diagnosis, I know that this disease can be debilitating at times. I do have some information for you and for anyone else out there who may need it.My mother is the Executive Director of the Colitis and Crohn's Disease Foundation (CCFA) of the Greater Bay Area. . On the local web site, there are lists of support groups all over the Bay Area (including Oakland) for both kids and adults. I recommend you take a look at the web site: http://www.ccfa.org/chapters/greaterbay/ and check out the various pieces of information. You will also find a local phone number for my mother (Carol Gerstein) in San Mateo. She is very knowledgable and has a great network of people whom she can refer you to. Please feel free to call her, she will be happy to talk to you.good luck to you. By the way, CCFA is a national organization (their web site address is: http://www.ccfa.org/ ) Molly