Crohn's and supplements

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Mom3
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/2/2009 2:03 PM (GMT -7)   
Hello! I have had Crohn's almost 5 years and was treated with Pentasa and Prednisone. Just had surgery 4 wks ago to remove Crohn's and a fistula. Surgeon said I am 100% Crohn's free but will have to continue treatment (thinking 6MP). I have never taken supplements but figure they are important since I dont get the vitamins and minerals needed. Any ideas on supplements? 
Diagnosed with Crohn's in the ileum, 2005. Treated with Pentasa and Prednisone. Had surgery June, 2009 to remove intestine and fistula. Will be starting 6MP.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/2/2009 5:34 PM (GMT -7)   
Welcome to the forum, Mom3!

I would consider a high-quality multi-vitamin/mineral for starters--one with iron since you are female (unless you're past menopause)! Many members here take a high-quality probiotic as well. Beyond that, you might start by reading people's signatures at the bottom of their posts to see what they take. Calcium, for instance, is needed by most women and is doubly important if you've given up dairy as many here have. Calcium can also firm up loose stools for some people, so it may have an added benefit for CD folks. I buy Calcium Citrate with D3. I also have my son take extra D3 during the months when he's not out in the sun regularly. The recent research on this supplement is VERY exciting and encouraging! Omega 3s are also beneficial...

I buy most supplements at a local health food store and steer clear of drug store supplements and places like GNC. jmho.....

Good luck to you! Hopefully others will give their input too!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/2/2009 7:11 PM (GMT -7)   
emom gave you some good advice.

a good probiotic is a must. vsl#3 seems to be a good and trusted brand for us.

if you eat a standard western diet (ie high in processed foods - calorie dense and not nutrient dense) then you'll need a good multi vitamin. i like the vitamin code by garden of life.

iron and calcium are good for women. for iron, i like solar labs iron. do NOT get a ferrous sulfate formulation of iron. take calcium with magnesium and vitamin D (preferably D3). both of these will immensely help the absorption of calcium. if you need a D3 supplement, i like carlson labs.

i encourage everyone to take digestive enzymes. take 1-3 with every meal, depending on portion size and what you eat at each meal. i find this more than anything helps me the most.

some other things to consider are a B-12 supplement. this should be in a sublingual form, preferably liquid and not a lozenge (i've had bad experiences with lozenge ones). also a green drink (ie cereal grass/algae blend). i like vitamineral greens for this. get the powder not the pill. green foods is another good brand. so is perfect food by garden of life but for me, the taste makes it intolerable.

a fiber supplement is optional and is really an individual thing as some of us can tolerate more than others.

a tablespoon per day of organic expeller pressed virgin coconut oil is a good thing too. dont worry, saturated fat is your friend. the people on the tv and in magazines are liars are trying to keep you sick so you'll by their meds to also keep you sick.

all this stuff is available at a good health food store.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 7/2/2009 7:47 PM (GMT -7)   
CrazyHarry

nail on head!

alive! is a great multi
i like kal's liquid cal/mag/d
love the digestive enzymes

imho stay out of gnc, there no help
diagnosed with crohn's 6-15-09 at age 23.

meds:
asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

supplements:
multivitamin, cal/mag, probiotic, fish oil, vitamin C, digestive enzymes, rice protein. looking into l-glutamine next


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/2/2009 8:58 PM (GMT -7)   
A few more details -

Avoid calcium carbonate as a supplement. It is poorly absorbed and depletes stomach acid if taken with meals (which means your enzymes won't work very well).

Look for a multivitamin without iron. Iron competes with zinc and copper for absorption, so it is better to take the multi (with zinc and copper) at one meal and the iron at another.

Vitamin K sources include green vegetables and intestinal bacteria. It is not usually included in a multivitamin, but if you are limiting greens or experiencing diarrhea, you may not be getting enough in the usual ways. It may also be a problem if you have lost part of your small intestine (it's absorbed there) or have inflammation there. Deficiency of vitamin K may make osteoporosis more aggressive and it has been associated with kidney stones. You may want to consider whether you need a vitamin K supplement or ask your GI. Depending on which country you are in, you may need a prescription to get a vitamin K supplement (it interferes with blood thinners like coumadin, used for heart conditions).

Vitamin D is also very important since it is involved in modulating your immune response. It may also be poorly absorbed if you have small intestine problems. It performs so many functions that it is desirable to have a blood level at the top of what is considered the normal range.

Probably the most important supplement to include is the probiotic. Do not take any mix of probiotic bacteria since the effects of different bacteria vary and some are definitely more useful than others. VSL#3 was mentioned and a couple of others that are well researched are Culturelle and Align.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/2/2009 10:05 PM (GMT -7)   
yeah, GNC blows.

watch out for additives like magnesium sterate. it is almost everything. try to find stuff that is wheat/gluten/dairy/soy free. you may have to look at a lot of supplements and even go to different stores.

calcium drives a lot of systems and is needed for more than just bones. almost every one can benefit from a calcium supplement as milk is really inferior due to all the processing and most of us are lactose intolerant.

iron and calcium compete, so dont take the two together. vitamin A competes with vitamin D so do not take vitamin D with vitamin A or beta carotene (plant precursor version of vitamin A)

an antioxidant supplement may be something to look into too. coenzyme Q10 (CoQ10) is a good start.

an omega 3 supplement like fish/cod/krill oil is good too.

aloe vera juice is something else you may want to try. get the full leaf, not just the inner fillet. i was using lilly of the desert but just moved on to herbal answer as it is organic, raw, and whole leaf and they add some other cool stuff in it like colloidal silver. it is twice the cost, but piqued my interest on how it was processed and what it contained and did not contain. so i'm looking forward to see how this works over the next month or so.

bottom line you have to do a lot of research and try a few different brands to figure all of this out. it sucks, but the reward is worth it. also, supplements get expensive very quickly as there is a lot to try. dont do too much too soon cos you'll get burned out and put a huge dent in yoru wallet and wonder if it is worth it cos they take time to take effect and sometimes you wont even feel a response but it is doing something beneficial. if you eat properly you wont need to supplement as much, but that is harder for some to do than others.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/3/2009 4:50 AM (GMT -7)   
Question about Vsl. Do you take the pills or the powder? Do the pills have to be refrigerated?
My doctor recommended Floagen 3 that I take but no one here has heard of it. wondering if it is any good or not?
Natural digestive enzymes? What brand would you recommend and do they really help?

Thanks!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/3/2009 6:09 AM (GMT -7)   
Wolfie40 said...
Question about Vsl. Do you take the pills or the powder? Do the pills have to be refrigerated?
My doctor recommended Floagen 3 that I take but no one here has heard of it. wondering if it is any good or not?
Natural digestive enzymes? What brand would you recommend and do they really help?


I think digestive enzymes are amazing! I've had minor digestive issues for nearly my entire life. Started taking digestive enzymes over 15 yrs. ago (long before my son was diagnosed w/CD). I feel like I need them less now than I used to--as if my digestive process has improved. My mom was taking prescription meds for acid reflux and stopped them completely after using digestive enzymes for a while. She no longer has issues either. yeah

As for a brand, I've used Ultra-Zyme by Nature's Plus forever. I get it at my local health food store, but it does have magnesium stearate. It's tough to find brands without it. CrazyHarry, what brand do you use? GOL?

I've purchased VSL#3 on several occasions and always get the capsules. The powder reportedly has corn starch or some filler (can't remember) that isn't good for CD. The capsules do have to be refrigerated. Most of those brands that require refrigeration are stable out of the fridge for a few days, though, as long as they don't get hot. I purchase another probiotic called Theralac online for my son. You can google it and read all about it if you wish.

Wolfie, btw... I have a Brittany named Haley! She's a hunter! too funny... turn
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/3/2009 6:54 AM (GMT -7)   
I just want to add that not all of us can take supplements. I have had 2 resections myself and have tried a bunch a different vitamins and they all made me sick. Even tried the liquid vitamins, childrens vitamins and no luck. I agree one of the most important supplements you should take is probiotics. I just take a lactobacillus and its sufficient for ME. I also can take a calcium supplement with Vit D. But multivitamins just tear up my stomach. Tried with food and every which way you can think of, without any luck. Have had the same problems with Omega 3's and Folic Acid. Folic Acid is supposed to be one of the easiest supplements on the stomach, but not me, makes me sick too. Grrr!!

Just want to make you aware that we are all individual, so don't be surprised if somethings upset you that don't upset others. My most important point to you is make sure you always take some type of maintainence med. Its best to keep the inflammation under control so you don't have any problems in the future. JMHO

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/3/2009 11:59 AM (GMT -7)   
Emom -

i used to take GOL omegazine. my naturopath has me taking similase GFCF. it is by integrative theraputics, inc. they are on the web but they do not sell this particular formula, although ones similar to it. this may be a new formulation or made exclusively available to health practitioners. i dont know. it says it targets "hidden" wheat and dairy, which is in just about everything. it is similar in price to GOL. i dont notice a difference between the two.




with some supplements you may feel worse but this could be a good thing. you are now introducing good stuff into your body that it was once missing. so sometimes you need to ride it out for a bit to see if it really doesnt agree with you or if it is an adjustment/detox phase that will pass. some stuff is best taken with food, others without. sometimes all you need is a different brand as a lot of have fillers and other ingredients that could be causing the discomfort. some you may take at night, some first thing in the morning. this is where research comes in.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Mom3
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/3/2009 2:34 PM (GMT -7)   
Thanks for your advise. I am new to the blog and so happy to have resources. Has anyone tried JuicePlus or USANC vitamins for Crohn's?
Diagnosed with Crohn's in the ileum, 2005. Treated with Pentasa and Prednisone. Had surgery June, 2009 to remove intestine and fistula. Will be starting 6MP.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/3/2009 4:23 PM (GMT -7)   
A couple of things I wanted to add.

As far as the probiotics, and maybe all other supplements, if one doesn't work for you, try another brand. I tried several, and they all made me feel worse. So of course I thought probiotics weren't for me. Eventually, my doctor got me to try another brand and lo and behold it actually made me feel better. So like everything else it is individual. And you need to try a bunch to find one that works for YOU.

Also, I find that a B6 supplement helps my energy level. It took about a month for it to kick in, but I did notice a difference. I take twice the amount of all supplements because things go through me at such a rapid rate, but that's ME.

And you should ask your doctor to test your B12 level, and if it is fine, have it checked again every year or so. It is not something that is checked on the regular CBC and some doctors don't automatically check it. Because your body stores B12 you may go years before you need supplements, or you may already be depleted. It affects your nerves so it isn't something you want to trifle with.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/3/2009 4:47 PM (GMT -7)   
mom3 -

do some research on juiceplus on google and see what you come up with. check it out on wikipedia too as that kinda sums it all up (problem with wikipedia is that it is kinda like open source in that the lay person contributes so sometimes sources arent validated).
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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