Son just found out he has cd

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labguy
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Date Joined Dec 2008
Total Posts : 17
   Posted 12/11/2008 11:06 AM (GMT -7)   
My son just found out this week he has crohn's. He's 23 and just graduated college. Just started taking antibiotic cipro(?) as well as lialda. I've done a lot of reading lately. I already have a ton of questions. I've heard fish oils, carb restricted diets and probiotics help some. Any info on these or other means (diet, supplements, etc) that have been helpful in controlling cd would be greatly appreciated. Just wondering if any experience with acutane possible being a trigger? Thanks so much

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 12/11/2008 11:28 AM (GMT -7)   
No one knows what causes or exactly triggers crohns for everyone. We have plenty of info here from the SCD diet to the latest meds. Plenty of suppliments have helped people ...

http://www.healingwell.com/community/default.aspx?f=17&m=709376

http://www.healingwell.com/sitesearch.aspx?cx=010904608862850737972%3Abe-6h9dblc4&q=crohns+diet&cof=FORID%3A9#930

http://www.healingwell.com/ibd/

http://www.healingwell.com/community/default.aspx?f=17&m=1144027


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 12/11/2008 12:02:20 PM (GMT-7)


Illini
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Date Joined Dec 2007
Total Posts : 298
   Posted 12/11/2008 11:43 AM (GMT -7)   
Sorry to hear your son has been diagnosed with CD. But there are a lot of knowledgeable people here, so hopefully you can get your questions answered.

Fish oil: One small study showed there was a benefit to fish oil, but a larger study showed there is no difference. So it's up to you. My attitude is that Omega-3's are good for you anyways--so why not? Right now I just use flax oil (Barlean's organic) but in the past i have used fish oil too. Buy it enteric coated. The one I used was called Fisol by Nature's Way.

Carb restricted diet: There have been a limited number of studies have shown this helps. Some people on here who follow the Specific Carbohydrate Diet, which cuts out most carbs. I have not totally cut out carbs but I do avoid simple/processed carbs and gluten. We have substituted white bread or white rice and pasta with organic brown rice, squash, quinoa, etc.

Probiotics: I use two. One is VSL#3 which has to be special ordered. The other is Primadophilus reuteri, also made by Nature's Way. Both of these contain strains of bacteria that have some scientific merit...

Other supplements I take are Vitamin E and Folic Acid. I have also used enteral nutrition (EN)...which is using something like Ensure for your source of nutrition. If there is inflammation in the ileum or ileum and colon, then exclusively using EN for food works about as well as steroids to get one into remission. I did EN exclusively for 2 months and nowadays I will go back on it exclusively for a week or so if I'm feeling bad. I don't use Ensure, there is too much sugar... I have used Peptamen and Nutren, both made by Nestle Nutrition.

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


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 12/11/2008 11:46 AM (GMT -7)   
If you google "class action lawsuit against accutane", you will see there is activity and IBD is mentioned among other things....

However, our family does not have any IBD in it--that is until my son was diagnosed--so it can literally come out of nowhere. (Many now believe it is caused by some environmental pathogen, anyway) We have had great success with the SCD, probiotics and other supplements. I realize we are fortunate and my son must have a "mild case", but there is evidence that a carb restricted diet can truly help. Unless he was eating extremely well at college, getting away from college food and junk food in general may help him, too. You might start by reading "Breaking the Vicious Cycle" by Elaine Gottschall (she coined the name Specific Carbohydrate Diet and researched it, too).

Welcome to the forum but sorry you have to be here. Hope your son feels better really soon!
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. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


labguy
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Date Joined Dec 2008
Total Posts : 17
   Posted 12/11/2008 11:59 AM (GMT -7)   
Very helpful info. Thank you. Keep it coming. Also, can you tell me exactly what a probiotic is?

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 12/11/2008 12:26 PM (GMT -7)   
Probiotics are beneficial bacteria found in the gut. Here is a Wikipedia definition:

Probiotics are dietary supplements and live microorganisms containing potentially beneficial bacteria or yeasts. According to the currently adopted definition by FAO/WHO, probiotics are: ‘Live microorganisms which when administered in adequate amounts confer a health benefit on the host’.

There are literally hundreds upon hundreds of brands on the market now. One needs to experiment to see which works best for them. We use Theralac, which you can google. Also, some find eating fermented foods like yogurt is helpful because they have hundreds of billions of naturally occurring probiotics. This is explained in the book mentioned before--BTVC.
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. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


labguy
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Date Joined Dec 2008
Total Posts : 17
   Posted 12/11/2008 12:35 PM (GMT -7)   
Is there a specific type, brand or dose that anyone's had success with. ..or does probiotic refer to a general supplement...eg folic acid,etc...?

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 12/11/2008 1:02 PM (GMT -7)   
Sorry to hear about your son. I'm one of the resident low-carb whackos, and would be happy to spout all sorts of ideas in your general direction given the slightest provocation.

"Probiotics" used to mean just live organisms- freeze-dried or similarly prepared critters that supposedly help the gut. It has come to mean many more things with the advent of "nutraceuticals" and so forth, but I prefer to use the term only with live organisms. Better still is yogurt- but the types of organisms used to make that yogurt are important, as is the manner in which it is prepared.

First step: read Elaine Gottschall's "Breaking the Vicious Cycle," or Google for the title (there's a website) or "Pecanbread," which is directed towards children.

Second step: get familiar with making yogurt. If you have "Trader Joe's" or "Whole Foods" nearby, you can get Fage yogurt, which is an excellent starter culture.

Be forewarned that Gottschall explicitly states to avoid L. bifidus for making yogurt. More recently, the entire genus Bifidobacterium has been used in increasing numbers of probiotics, including VSL#3. Recent research has shown that bifidobacteria may put off the same enzyme (pullulanase) that is produced by Klebsiella pneumoniae, which has been implicated by the Ebringer group in the UK as causing Crohn's. Whether "Klebsiella Crohn's" (there is no such thing) is the same as "Accutane Crohn's" (there is no such thing)- I don't know. I do know that VSL#3 caused me a lot of pain and blood when I was doing very, very well on Gottschall so I still have a nearly full box of the stuff if anyone wants it! Some others swear by it, and say it does them a lot of good.

Of the supplements known to work:

Fish oil (recommended by many- I take it when I remember)
Pantothenic acid (recommended by some- I take it, 900 mg/day in evenly divided doses)
Vitamin D (recommended by some- I take it, I forget how much)

With Crohn's comes damage to the gut, which leads to impaired nutrient uptake. This can lead to a variety of blood disorders, including those caused by insufficient B12, folate, etc. Check with your doctor.

Be wary of iron supplementation. Dietary iron is MUCH better than supplements.

mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 12/11/2008 2:30 PM (GMT -7)   
Also beware of the Cipro, it caused me some tendon damage. Tell him if he feels any twinges or clicks in his tendons (especially achilles) to call his doctor.

Bad flare May '06 resulted in CD diagnosis
 
Asacol: 4800 mg/day; Entocort: 9mg/day; Metronidazol
Started seeing a Naturopath-Castor Oil Packs, Liquid B Complex, Floragen, Ribes Nigrum, Herbal GI, Chlorella
 
"Life isn't about how to survive the storm, but how to dance in the rain"


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 12/11/2008 2:31 PM (GMT -7)   
labguy said...
Is there a specific type, brand or dose that anyone's had success with. ..or does probiotic refer to a general supplement...eg folic acid,etc...?


For some reason in my previous post the last paragraph was extra-tiny font.confused Probiotic is the general name of the supplement and there are hundreds of brands to choose from. My son uses Theralac which you can google and read all about. I've also purchased other brands like Udo's, Dr. Michael Murphy's, VSL#3, Solaray, they go on and on.

Although this site is pushing a specific brand of probiotics which I know nothing about, I like some of the information and explanations presented here about what probiotics are. You might enjoy reading it! Sorry, I don't know how to link it, so simply cut and paste into your browser:

http://www.gonando.com/probiotics.html

Most things you read say to find a probiotic with at least 15 billion cfu and multiple strains. You may find, as Osprey said, that a probiotic with bifidobacteria may not be a good choice, though the one we use has bifidobacterium lactis and bifidobacterium bifidum and it has been fine (I'm assuming they're the same family...). A probiotic with Lactobacillus acidophilus as the main strain is a good starting place. In any case, you may need to experiment with brands of probiotics a bit to see what works best for your son.
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. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


Shann-
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Date Joined Dec 2008
Total Posts : 7
   Posted 12/12/2008 12:39 AM (GMT -7)   
well he cant just be on antibiotics.
in crohns the body attacks itself
he should be on an anti-inflammatory
. thats what i use. . and my crohns is doing well. i flare up once a year approx.
there is pentasa.. which is a big pain in the butt to take..but it works great.
when i was on it i had to take 3 pills 3 times a day.. they werent small either.
but now i am on 6MP or mercaptopurine.
that has worked for me... no need for fish oils or anything..
but also.. i am only 17. but i have had crohns for 5 years now.

labguy
New Member


Date Joined Dec 2008
Total Posts : 17
   Posted 12/12/2008 6:15 AM (GMT -7)   
I'm truly grateful for your help. So is my son. He was away on business this week, but I told him of the forum. He'll be signing up soon I'm sure. To answer Shann....He is on lialda. (See original post) which is the anti-inflammatory. Please continue to pass along to me any questions or suggestions that you wish. I'll try to figure out this font size thing too.

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 12/12/2008 6:31 AM (GMT -7)   
Hi and welcome Alot of us have low B-12 so it is good to keep a eye on that and a good multi vitamin as well .I go for low roughage diet and I stay away from seeds,nuts, popcorn, corn, peppers. turnip and anything that is hard to digest. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Shann-
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/12/2008 1:18 PM (GMT -7)   
sorry labguy. i must have missed that.
and ive never heard of that anti-inflamitory.
ill have to look it up.

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 12/12/2008 1:22 PM (GMT -7)   
Lialda is a brand name for mesalamine, also known as Pentasa and Asacol, among many other names.

Of the drugs for Crohn's, it has (in my opinion) a better risk:rewards ratio than some other meds.

labguy
New Member


Date Joined Dec 2008
Total Posts : 17
   Posted 12/13/2008 4:48 PM (GMT -7)   
Good to hear your endorsement..??of Lialda Osprey. No problem Shann..He's looking into the CSD...or is it SCD diet, and has ordered the book "Breaking the Vicious Cycle" I'm glad this forum is here. Drobert

Osprey101
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Date Joined Apr 2008
Total Posts : 227
   Posted 12/14/2008 1:41 AM (GMT -7)   
"Specific Carbohydrate Diet," so- yes, SCD. "Breaking the Vicious Cycle" is good- very good- but complicated in that it can drive the dieter to orthorexia. If he gives up in frustration due to complexity, the recommendation of Dr. Wolfgang Lutz ("Life Without Bread") is much easier to follow; he reports an 85% success rate. Very simply: restrict carbs to no more than 72 grams per day. Interestingly, Atkins (who- obviously- is also into carbohydrate restriction) reports the same success rate for Crohn's patients following his diet.

I would temper either of these "unlimited" diets with the suggestion that the dieter not consume any starches- no grains, no breads, no potato, no corn, no rice- although neither Lutz nor Atkins says so.

Best wishes!

labguy
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Date Joined Dec 2008
Total Posts : 17
   Posted 12/14/2008 8:05 PM (GMT -7)   
Interesting. I don't presume to have any answers...and I'm not a conspiracy theorist....but I can remember ...oh I think maybe 8 years ago (?) when there was a remarkable discovery that most bleeding ulcers aka stomach ulcers were caused by a bacteria. ( I remember Zantac went over the counter overnight). This went undiscovered by those in the medical community for ..for...for ever. I'm hoping and praying this SCD works. Thank you guys for the info and for your support. I'm still surprised that the GI doctor never even whispered SCD. Thank you

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 12/14/2008 9:55 PM (GMT -7)   
Imo, labguy, you're right on. And for the record, our GI never mentioned any kind of diet, either. In fact, he went to the complete opposite extreme by saying "no dietary restrictions or recommendations." Imagine my challenge then, when I learned (here on this forum, I might add) of the MD and the SCD and proposed it to my son! Thankfully he's a trusting soul...

Yes, stomach ulcers....that little bad critter would be H. pylori. Many believe something similar is going on with Crohn's, with a possible genetic susceptibility or inability to fight the bug.

Lastly, if your son decides to embark upon the SCD, I just want you to know there are tons of online resources as well as cookbooks written for the SCD. It is very helpful to become familiar with them so you don't feel so restricted. I know many here say the diet is restrictive, but imo once you get over the sugar addiction, it's not that bad! Best wishes to you and your son! I'm sure he appreciates your support and helpful research!

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 12/14/2008 11:05 PM (GMT -7)   
That is correct; a good number of stomach ulcers are caused by Helicobacter pylori, which ended up winning the discoverers the Nobel prize. They were originally roundly ridiculed for their beliefs.

http://nobelprize.org/nobel_prizes/medicine/laureates/2005/press.html

Interestingly, Lutz has noted that heartburn is frequently quickly cured by taking the carbohydrates out of the diet- and if it comes back, it's usually because the dieter has allowed the carbs to slip back in. Exactly why this causes heartburn is a good question; some have suggested all that sugar has a strong osmotic effect on the stomach, causing an increase in acid production. This may have substantial relevance to the modern prevalence of stomach ulcers; too much sugar = too much acid = good environment for H. pylori to thrive.

labguy
New Member


Date Joined Dec 2008
Total Posts : 17
   Posted 12/15/2008 6:44 AM (GMT -7)   
One other point of interest in my son's diagnosis. The first test run was a stool culture. This showed a particular bacteria (found mainly as an infection in children...I'll get the name and specifics). Because this bacterial infection was present the GI said that prevented him from diagnosing Crohn's out of the gate. The biopsy done during the colonoscopy was the means to confirm Crohn's. Thanks so much

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 12/15/2008 12:42 PM (GMT -7)   
Was it C. diff (Clostridium difficile)?

Clostridia are common to the human digestive tract, and C. diff may be commensual (living there "naturally") in some people (single-digit percentages). They tend to be highly antibiotic resistant, and infections common recur.

labguy
New Member


Date Joined Dec 2008
Total Posts : 17
   Posted 12/15/2008 1:29 PM (GMT -7)   
I'll find out for sure Osprey....it may take me a couple of days. I just remember the GI saying that the strain was one generally found in the digestive tract of children..?? That's why he was put on Cipro. Has C-Diff been linked to Crohn's?.. Directly or indirectly. I hope some of these questions aren't too redundant. Thanks

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 12/15/2008 8:31 PM (GMT -7)   
C. diff is one of those bacteria that can really cause a lot of problems; but, really- in an acute phase of disease, how does Crohn's differ from other GI illness? Pain, discomfort, D, pain, blood, more D, more pain and discomfort, ow, etc.

Another one that is strikingly similar is Whipple's disease. WD is so rare that maybe there are a thousand cases in medical history. Eventually most get figured out, the patient gets put on antibiotics, and they get better- eventually. The organism that causes it is Tropheryma whipplei, and it presents with:

Weight loss, diarrhea, joint pain, and arthritis, as well as malabsorption. (So sayeth Wikipedia, anyway.) Collectively:

* Arthritis up to 75% or arthralgia. Usually oligo- or polyarticular, symmetric, transient and can be chronic.
* Malabsorption
* Intestinal lipodystrophy (accumulation of fatty deposits in lymph nodes of the intestine)
* Lymphadenopathy
* Abdominal pain
* Diarrhea
* Fever
* Melanoderma
* Neurological symptoms
o Cognitive changes
o Nystagmus
o Oculomasticatory myorhythmia (OMM) (pendular vergence oscillations of the eyes and synchronous contractions of the masticatory but not palatal muscles) is pathognomonic of Whipple disease[6]

Now, it's not a complete overlap with Crohn's, but isn't that interesting? What if some of the symptoms we see from CD are caused by the organism that causes WD? Something like 15% of people have T. whipplei in their system, with no apparent disease. So it wouldn't be out of the question.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/16/2008 6:27 AM (GMT -7)   
labguy, if it turns out to be C. diff, you might have him ask his doctor about putting him on yet another probiotic. It's one strain only of a beneficial bacteria proven to fight C.diff. The strain is Saccaromyces boulardii. This particular probiotic is marketed to doctors under the brand name Florastor. You can google it if you wish. People here who have used it in conjunction with antibiotics to kill S. boulardii report great success and less likelihood of recurrent infections. I would stay on it for months after finishing the antibiotics. You can also get S. boulardii at better health food stores.

Here's a study: http://www.horizonpress.com/cimb/v/v11/47.pdf
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