learning from colonoscopy re SCD/Entocort

The colonoscopy corroborated some scarring, but no stricture - this means the SBFT was accurate, and next time we see something on the SBFT, we don't necessarily need an invasive procedure to corroborate it. We also learned the doctors who assumed the stricture was permanent, due to scarring because of 2 yrs of untreated Crohn's (misdiagnosed), were wrong.

The bad news is there are a couple of small spots of active inflammation in the terminal ileum...the "mass" was a combination of scarring and inflammation. 

Clearly, the one pill of Entocort and/or the modified SCD diet might be helping, eliminating the stricture and symptoms, but did not bring Crohn's to a dead stop. By SCD "modified" I mean that potatoes and rice were added, which are "illegal" according to the SCD diet. It should be noted that the author of the SCD diet did NOT recommend that it be modified, so we think perhaps strict SCD would work...right now, we just don't know.

Thanks, everybody. 

EMom, it's possible the college dorm will be able to help your son. My daughter talked with dieticians at her college's food court, and now they keep a special pan set aside for her so that she can walk up and ask for a cooked piece of chicken or beef. And they let her read all the labels to find out the ingredients in everything they use. Colleges are becoming more sensitive to food issues amongst students.

Nanners, I'm not sure anybody has proved that SCD doesn't work for at least some patients.

Illini, she did try strict SCD starting May 2006, but bowel noises (signs of a stricture) continued, and when she tried to go off Entocort on July 5, she landed in the hospital, with vomiting due to a stricture. Now, it's possible she wasn't on SCD long enough before she tried to go off Entocort. But even after the hospital stay, when she continued the strict SCD, symptoms left over from the July 5, 2006 flare -- RLQ pain and loud bowel noises (from the stricture) continued months afterward. It was hard for her to maintain weight, since she hates nuts and couldn't tolerate nut flour (made her bloat), so we finally added potatoes and rice because we had met with Dr. Galland, who has trialed SCD, and he didn't think these additions would do any harm. I'm not sure she could stand to try strict SCD, again.  Clinical trials show that one pill of Entocort is unlikely to keep anybody in remission for even a year, so I'm sure the modified SCD, along with that one pill, helped her stay symptom-free for the past two years. The supplements are probably helping, too. For 20 cm of a tight stricture to vanish is really remarkable, so we are happy about that. It's possible that upping the dose of ENtocort can further reduce the remaining inflammation, but we need to weigh that against risks. She has been on Entocort so long that it is time to be trying to get off it, not increase it. EN seems to be best for acute episodes. I'll look up Xifaxan, thanks. 

Next steps with non-traditional meds could include any of the following: LDN, strict SCD, Maker's diet, Dr. Wolfgang Lutz's protein diet, the antifungal diet (Dr. Galland claims to have used it to heal a Crohn's patient), etc. 

Post Edited (njmom) : 3/30/2009 10:11:43 PM (GMT-6)

thanks, nannners!  

aocc - LOL, talk about the pot calling the kettle black - "Arby's breaks" is not compatible with SCD. I clearly described the differences between the modified SCD and strict SCD and never advocated anybody modify SCD in any way, even counseled people to follow it with "fanatical adherence," as the book says. Btw, she was on "strict" SCD for nearly six months. How do you know you are in remission? 

spookyhurst, are you taking meds with SCD? or are you med-free? 

MMMNavy, thank you for the feedback. We all need candor, based on personal experience, about what works and doesn't.

yogaprof, yes, rice and potatoes were added because, although they are illegal because rice is a grain (forbidden by SCD) and potato is a starch (also forbidden), at least they are gluten-free. She has had the Celiacs test, and tested negative. BUT after she was diagnosed with Crohn's, two of her cousins were diagnosed with Celiacs. And another cousin (the kid of another sister) was diagnosed with IBS, but found out that by avoiding wheat, a host of symptoms disappeared. So we are looking very suspiciously at gluten and she plans to stay gluten-free...in fact, she is grain-free except for rice.   

Keeper, good advice. Yep, she's taking the 2000IU vitamin D3. She has been diagnosed as vitamin D deficient. I believe the Entocort is hindering her ability to build up vitamin D despite supplementation - with supplements she is still deficient (19 or higher), but at least less deficient than before (14). More importantly, we have seen her parathyroid (PTH) settle down as a result of supplementation.