Recommendations for Crohn's and Colitis patient

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!

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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.

Please also realize she could be suffering needlessly while others pressure her to look for a cure. My sister nearly died after 5 years of the rest of our family pushing for every injection, drug, diet, etc while she had horrific episodes that impacted her ability to work, travel and date. She lived only thanks to high doses of steroids and terrible side effects. At 25 her colon nearly perforated and she finally went for the colon removal/ostomy. She is a new person. She lives pain free, travels, enjoys food, works full 40+ hour weeks and has a a marriage free of the stress of a chronic health condition. I pray your friend finds a cure, but having walked this with my precious little sister I wish others besides me affirmed the choice of ostomy bag and surgery earlier. Those are years she won't get back. Society tells folks they are maiming themselves, they cannot be beautiful or accepted with a bag, etc. It's not true and the quality of life is exceptional. Just another perspective!

I'm sorry to hear your friend is suffering.  I can relate and empathize with what she's going through.  I have been through so many practitioners with mixed results until finding the doc I see now.  Dr. Deena Neff is a Functional MD who has helped me tremendously with IBS, SIBO, Hashimotos.  I also have seen a GI doc named Dr. Faraz Berjis who is also very good.  Both are in the East Bay.  Switching to a paleo/ancestral diet has also made a huge difference.  GAPS is also a gut-healing diet and Three Stone Hearth is an amazing resource/grocery in the East Bay,  For me, the Autoimmune Paleo Diet has been the most effective.  Also, for acupuncture John Kokko and Mayan abdominal massage.  Hope she gets the help she needs!          

Seeing the above answers, I wanted to make sure you know that IBS is not the same as IBD.  Crohn's is one of the IBD, diseases that are serious.  My son has the other IBD, colitis.  I hope you will encouraged in some way to know that IBD is not straightforward to treat, but there are many medicines the docs can try.

My son just formed a Crohn's and Colitis support group at Kaiser Oakland. You don't have to be a Kaiser member to attend. Please have the moderator give you my email address, I have a ton of information for local support and doctor's. There is no cure for Crohn's, but patients can enter a clinical or complete remission with the right mix of medication, life style and diet.

P.S. from moderator: you can click on the poster's user name to message him/her

I am sorry to hear that your friend is suffering with this. My brother suffered horribly with Ulcerative Colitis for years. The medications didn't work for him and he was often put on IV steroid treatment. After years of suffering, he finally had his colon removed. This was a complicated surgery and he had a difficult recovery (he was in the hospital for months). But I am happy to say now he now lives a normal live. The surgery was not an easy decision for him to make, but it gave him his life back.