On SCD for over a year

Hello All,
My son was diagnosed with Crohn's disease in June 2017 who is 12 years old. Since July 2017, he is on SCD, his symptoms disappeared after being on SCD, he is growing and his fecal calprotectin tests were normal after being on SCD. In August 2018, he had endoscopy and colonoscopy, found inflammation and ulcers unchanged after being on SCD for a year. Does anyone is in same situation? Does anyone know how long it takes to heal ulcers and inflammation if we continue be on SCD? My son is happy, growing and no symptoms on SCD but ulcers didn't heal - not sure if we need to try medication or be on SCD hoping some day his ulcers will heal. Any inputs are appreciated.
Thanks,
Heena

Congratulations that the SCD is working so well suppressing your son's symptoms. And at least his ulcers are not getting worse.

Everyone knows how Crohn’s can impair absorption of vitamin B12, that is why so many here regularly take B12 shots. But Crohn’s can also cause deficiency of other nutrients especially folic acid and zinc. Zinc is crucial for wound healing, and sometimes a deficiency of biotin and folate can manifest as a symptom of your hair falling out.

You can test for blood levels of folic acid and zinc and supplement accordingly. (Actually folate may be a better supplement since it is the natural form of folic acid). Perhaps it is a good idea to take a multivitamin that has generous amounts of zinc. Hopefully this can help with slow healing of ulcers.

This is from The Encyclopedia of Natural Medicine by Michael Murray and Joseph Pizzorno, page 597:
Evidence of zinc deficiency occurs in approximately forty-five percent of Crohn’s disease patients and in similar numbers with ulcerative colitis…many of the complications of the disease may be a direct result of zinc deficiency: poor healing of fissures and fistulas, skin lesions, retinal dysfunction, …

ambling said...
Be careful listening to naturopathic nonsense.
A few extra vitamins are unlikely to heal damage caused by Crohn's Disease.

I don't believe testing blood levels for adequate nutrition is 'naturopathic nonsense'. At the very least it couldn't hurt.

But you could always research the 'nonsense' that is published in PubMed (pubmed.gov). It is developed and maintained by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine:

/www.ncbi.nlm.nih.gov/pubmed/4018707
Zinc deficiency is common in patients with Crohn's disease (CD), especially in those with skin lesions and growth retardation... Zinc deficiency may play a role in the formation and clinical course of fistulas.

/www.ncbi.nlm.nih.gov/pubmed/1107772
Complete healing of ulcers occurred more frequently in the patients taking zinc sulphate than in patients treated with placebo. The placebo group contained more patients whose ulcers did not heal at all, than the group taking zinc sulphate. No side effects from zinc sulphate were noted.

/www.ncbi.nlm.nih.gov/pmc/articles/PMC1856764/
Zinc carnosine, a health food supplement that stabilises small bowel integrity and stimulates gut repair processes

Try adding LDN ( Low Dose Naltrexone). Look it up and do some research. I know several CD families that have used it for their children in conjunction with SCD diet with good success. I get my LDN from skips compounding pharmacy in Florida . Always ask for the lactose free filler.
Best of luck

ambling said...
Gastric ulcers are not at all related to Crohns ulcerations! Taking zinc doesn't cure fistulaes!

If you read all the studies you will find that zinc not only healed gastric ulcers but prevented the rise of 'gut permeability' and stimulated healing to the small bowel. Please remember that the OP's original question was how to stimulate intestinal healing after a flare.

Nobody ever said zinc cures fistulas outright. I was quoting a scientific study indicating that “Zinc deficiency may play a role in the formation and clinical course of fistulas” . There are likely some cronnies here who might find that information useful.

ambling said...
You don't have Crohns and you don't speak for people who have Crohns

What right do you have to tell me what I am allowed to say and where I am allowed to post? I will post here, on the UC forum, the diabetes forum, or anywhere I choose. In 2015 one of the moderators deleted my thread on the psoriasis forum, and the admin then sent out word to everyone that I had every right to post there.

FWIW I was originally diagnosed with UC. When flaring my symptoms were just as bad or worse than most that I have read here. My GI later changed that diagnosis to Crohn's Colitis after I developed a severe perianal abscess. (Most abscesses are associated with Crohn's. My signature says “DX IBD Feb08” because IBD can either mean UC or Crohn's). My GI didn't seem concerned, “the meds are the same for both”.

I don't understand your constant ad hominem attacks on me. Do you insist that I don't have Crohn's because I can remain in remission for months or even years by monitoring my diet and taking supplements (like zinc lol), and not taking any meds? Apparently you don't want anyone to hear that. If that is your problem then please get over it.

There is ongoing research regarding vitamin b12 as well as zinc deficiencies in Crohn's. Both are involved in modulating immune response, so stand very connected to the mechanism of Crohn's.

I would throw every rock I could at a kid however. I'd see a g.i. who researches it and get b12 shots, and ask about zinc's absorption in your kid's g.i. tract. If they offered it as a shot, that'd be the best approach to intake.

The downside of the anti-tnf-alphas is that they also do not guarantee mucosal healing. If you read any of the studies on them, you will find them uncontrolled and mildly effective (far less so than they are for symptom healing and bloodwork, much like the diet. The mucosa being damaged is resistant). 15-50% of people have some mucosal healing after a year on infliximab or vedolizumab.

Clinical and mucosal improvement with specific carbohydrate diet in pediatric Crohn disease.
Cohen, SA.

Did find that it worked for the mucosa in 2/7 participants, using capsule endoscopy. So, rarely it may work. I wouldn't bet on that rate though. I do however find that about that many people are unable to follow the SCD due to the precision of the guidelines and the complexity of processed foods.

My advice as an adult who researches in human molecular biology and has had Crohn's for eight years: get the kid on entyvio(or some anti-tnf-a) now, and wait until he starts to loose response. In the mean time, set up an alternate plan with a G.I. dealing with modifying the body's own immunology(b12, zinc supplementation.) It'll let you wait a few years until the kid starts loosing response (and has grown for a while with good nutritional absorption) to investigate supplementation in conjunction with the scd.

Post Edited (wibblypig) : 8/15/2018 11:04:36 AM (GMT-6)

ambling said...
it horrifies me when people approach nutrition with reckless abandon

sometimes biologics are the best option for children

Maybe if nothing else seems to help. But I don't understand why not first try safe nutraceuticals that are proven to possibly help as shown in previous posts in this thread.  Before immediately choosing a biologic, many with 'black box' warnings especially for adolescent young males such as the OP's 12 year old son.

/online.epocrates.com/drugs/330011/Humira/Black-Box-Warnings
Serious Infection Risk

weigh tx benefit vs. risk in pts w/ chronic or recurrent infection; pulmonary and extrapulmonary tuberculosis (TB), invasive fungal infections, and other opportunistic infections incl. Legionella and Listeria observed; some infections have been fatal; most infections occur in combo w/ other immunosuppressants; evaluate for TB risk factors and screen for latent TB infection before and during adalimumab tx; initiate anti-TB tx before adalimumab tx; monitor for infection s/sx during and after adalimumab tx; since active TB has developed in pts w/ negative tuberculin skin test, monitor all pts for active TB s/sx; since histoplasmosis may be present in pts w/ negative antigen and antibody tests, consider empiric antifungal tx in pts w/ severe systemic illness if at risk for invasive fungal infection; D/C adalimumab tx if serious infection or sepsis occurs

Malignancy
lymphoma and other malignancies, some fatal, reported in children and adolescents treated w/ TNF blockers; post-marketing cases of fatal hepatosplenic T-cell lymphoma (HSTCL) reported mostly in Crohn dz or ulcerative colitis pts, mostly adolescent and young adult males receiving concomitant azathioprine or mercaptopurine; uncertain whether HSTCL related to TNF-blocker monotherapy or in combo w/ other immunosuppressants.

Post Edited (IamCurious) : 8/17/2018 8:03:32 AM (GMT-6)

My apologies to Heena, the originator of this thread, for the hijacking of your thread by those that wish to argue alternative therapies.

In light of no additional posts from those with SCD experience, I'm locking it down.

Heena, if you have more questions, please ask away. We won't let others overtake it next time!