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Ulcerative Colitis
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Posted 5/29/2017 3:01 AM (GMT 0)
My pediatric daughter was diagnosed with Crohns in 2013. When mesalamine and 6MP failed, we tried FMT which gave brief remission for some time and afterward stopped working. We may have given more than 100 FMTs with 2 donors and gave up on FMT after 1 year. Then we tried LDN which again gave brief remission for about 6 months and then LDN stopped working.

We were forced to go with Remicade and now even after 3 infusions plus a high dose of steroids blood is heavy and we are now very worried.


PS: We have always been on SCD diet and daughter has very strict diet. Have tried SCD and GAPS and everything failed. In 2015, we tried total elemental diet with Neocate, Elecare and Vivonex for 2 months and it did not help at all.


Have tried every type of probiotics, kefir, sauerkraut and nothing is working now.
Posted 5/29/2017 2:29 PM (GMT 0)
Sorry to hear you're struggling so much with her. You mention many treatments individually. Have you tried them combined? Like methotrexate and remicade at the same time?

I'm not as familiar with Crohn's treatments but you should have stelara approved, and perhaps a few others we don't yet officially have with UC.
Posted 5/29/2017 3:03 PM (GMT 0)
Are there any other alternative therapies apart from FMT, LDN and Ayurveda? I have tried all three and it failed after sometime.
Posted 5/29/2017 4:13 PM (GMT 0)
There's as many alternatives as there are IBD patients. Here's those listed in our resources thread.

ALTERNATIVE

Clinical Trials:
clinicaltrials.gov/

Diets:

Fecal Bacteriotherapy: http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

IVIG - Intavenous Immunoglobulin: http://www.ncbi.nlm.nih.gov/pubmed/1728132

LDN - Low Dose Naltrexone: http://www.lowdosenaltrexone.org/

User InSoFL's story about LDN

Nicotine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014383/

Phosphatidyl Choline: Must be compounded to release properly
http://www.annals.org/content/147/9/603.abstract

Probiotics: Can be in pill form, yogurt, kombucha, kefir, fermented foods. Common oral pills/powder are Align, Culturelle, Florastar, Naturen, and VSL#3.

Supplements: Aloe Vera, Bitters Compound, Bromelain, coconut oil, Deglycrrhizinated Licorice (DGL), Digestive enzymes, Flaxseed, Folic Acid, Ginger, Grape Seed Extract, Grape Seed Extract, Nopal Water, Holy Basil, Peppermint, pineapple, Omega-3, Oregano, Psylium Husk (metamucil or Citrucel), Slippery Elm, Turmeric/Curcurmin/Boswellia, Vitamin D, and vitamin-e enemas.

Triple Antibiotic Therapy: amoxicillin 1500mg/day, tetracycline 1500mg/day, and metronidazole 750 mg/day
http://www.nature.com/ajg/journal/v105/n8/abs/ajg201084a.html

Tumeric (Curcumin) Use in UC: Research on Safety and Dosing (see links below)



Wellbutrin: some studies have shown Wellbutrin to be effective as a TNF Blocker.

Worm (Helminthic) Therapy: http://en.wikipedia.org/wiki/Helminthic_therapy

Medical Marijuana
Posted 5/29/2017 4:45 PM (GMT 0)
I hate to say this, and I certainly wouldn't if I hadn't had surgery, but I would probably do some research on surgery personally. The idea of a child doing 100 fecal enemas is frightening to me. I've been so much better since surgery. Yes, it is a life of more trips to the toilet, but it's not a life of bending over and inserting enemas into my butt anymore. No more wondering when I will be well, if I will be well. No more missing out and worrying about whether that taco caused the symptoms... I am old enough to understand why I am using the enemas & I still found all of it pretty intolerable, especially since there is no end to it, I can't imagine having that done to me as a child.

Oh, i am sorry. I was thinking UC, not Crohn's (even though you clearly said Crohn's). I wouldn't recommend surgery for Crohn's since I don't know anything about that. I think iPoop is right, I would get the test to see about the remicade levels, and give it some more time, then move on to another biologic if needed. Did she have stool tests recently? How about any antibiotics? Ever tried with luck? How about the Crohn's board here? Much better info there vs. here.
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