learning from colonoscopy re SCD/Entocort

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njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 3/30/2009 9:04 AM (GMT -7)   
A few months ago my daughter had a SBFT which showed there was no stricture. Amazing...because a 20 cm stricture was clearly indicated on an SBFT in March '06 and it was so bad that a colonoscopy, done at the same time, could not reach into the terminal ileum. Recently she had a colonoscopy, mainly because something showed up on the SBFT that might be a "mass."
 
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.
Daughter (21) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress but landed in hospital on 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill) since May 07, SCD multivit, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, daily 1000 mcg B12. B12 shots monthly. SCD diet modified to include potatoes and rice.   


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 3/30/2009 10:55 AM (GMT -7)   
njmom, thank you for sharing that information! It sounds like it's a mixed bag of good and not so good news. I think mostly good, though, considering there is no stricture! It seems that sometimes even doctors don't realize our body's ability to heal itself. Hopefully the scarring and inflammation will soon subside, too! Do you think your daughter will now do strict SCD? Though we have a little over a year to plan, I worry about my son's ability to follow it strictly while away at college... Thanks again for sharing!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 3/30/2009 12:47 PM (GMT -7)   
Njmom I just read yesterday that the SCD diets are good at improving "symptoms" of the disease but that maintainence meds should be continued while on the diet to control the inflammation. Just thought I would share that. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 3/30/2009 2:02 PM (GMT -7)   
Thanks for sharing. I think it is good news overall, in that she does not have a stricture. Sad to hear that there is some inflammation. Does she feel good, I mean, does it "feel like" remission?

Going more strict on the SCD is one option. Or maybe it's time to go back up to 9 mg entocort for 8 weeks? If she can tolerate it. Another thought is Xifaxan. It is not absorbed by the body, similar to Entocort. Also... If she is so close to having the inflammation under control, maybe a short time on exclusive EN would be what she needs--possibly with partial EN in the long term? The diets are not SCD legal, but there is good evidence that they are effective. I use one that is higher in fat and lower in carbs, there are others that have a lot of protein and fewer carbs.


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 3/30/2009 4:14 PM (GMT -7)   

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)


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 3/30/2009 10:45 PM (GMT -7)   
I want to suggest one small addition to your regimen - add a 2000 IU daily dose of vitamin D. There is current research that links D deficiency to auto-immune diseases and some reports of good results from treating them with the vitamin. For reference, a report in the American Journal of Clinical Nutrition reported no excessive increase in blood levels of vitamin D after taking from 5500 to 11000 IU a day for 20 weeks - so 2000 IU should be safe and may be low.

aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 3/31/2009 1:37 AM (GMT -7)   
lol yeah you cant call it SCD with those added...Give it a different name because those that you have kept are main violators of the diet :)
SCD since 01, remission since 01, occasional Arby's breaks :)


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/31/2009 7:45 AM (GMT -7)   
If she has cut out gluten, that could be helping to heal her gut.
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/31/2009 8:51 AM (GMT -7)   
njmom I am not saying that the SCD diet does not help some people, I was just saying that I read that the diet is really good for knocking down the Crohns symptoms but that it is best to stay on Crohns meds at the sametime to keep the inflammation down. Your daughter is doing well symptomwise on the diet, but its obvious from her tests that inflammation is still continuing. Sending good wishes to your daughter.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 3/31/2009 9:10 AM (GMT -7)   
I am the example Nanners is thinking of. I ended up with a massive GI bleed after less then six month on strict SCD. It just does not work for everyone, but I am really glad it works for some people.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 3/31/2009 12:14 PM (GMT -7)   
I've been on SCD for 4 months now, and will have a colonoscopy in May. It will be interesting to see what my scope shows!

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 3/31/2009 2:58 PM (GMT -7)   
Nanners, do you remember where you read this information? If there's one thing I have learned here on this board from all of you is that everyone is different. It seems to me that if that statement holds true, then there would be people who could make it without meds--albeit, maybe a very, very few. I find it hard to reconcile that my son's GI would wholeheartedly recommend we discontinue all meds unless he was certain this was the correct path for *him*.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/31/2009 4:16 PM (GMT -7)   

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. 


Daughter (21) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress but landed in hospital on 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill) since May 07, SCD multivit, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, daily 1000 mcg B12. B12 shots monthly. SCD diet modified to include potatoes and rice.   

Post Edited (njmom) : 3/31/2009 5:35:15 PM (GMT-6)

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