new member- kids forum, vitamins?

My 12-year-old daughter was diagnosed w/ Crohn’s in Dec. of 2011. She had 3 treatments of Remicade (gained 8 lbs.!) until she has an allergic reaction. We are looking into Cimzia next.  I have found your forums to be very helpful and have just recently joined.

 

Two questions:

Is there a specific forum here for youngsters? Unfortunately there is no adolescent support group in our area and I think she would really benefit from talking to other kids about her diagnosis and problems.

 

Also, I frequently see members list the nutritional supplements they take such as fish oil, B-12, etc.  I would like to explore this more for my daughter but don’t know where to begin. I’ve looked for a nutritional therapist who specializes in Crohn’s, but no luck. I’ve thought about consulting a health food store too.  Any ideas of where to start?  How do you know what to take?  And do any of these supplements/vitamins adversely affect the traditional medicines? She is currently taking 1200 mg/ day of Asacol and we are hoping to start Cimzia soon.  

Many thanks!

Welcome to the forum.

As for vitamins, your daughter's doc (either gastro or general doc) can order blood tests that measure levels of certain vitamins, such as vit D, vit B12, folic acid, and others. Those are some of the more common ones tested, because those are ones that people with Crohn's are commonly deficient in.

Many people get B12 shots regularly - either because they're deficient or because it will keep them from ever getting deficient.

Vit D supplements are super-cheap and unlikely to cause any problems down the line. They may or may not do much good, but they likely do no harm either - and they're cheap, like I said.

Folic acid is needed along with certain medications (methotrexate and sulfasalazine), but many others take a supplement of that even not on those meds.

Fish oil may be beneficial, but should be discussed with the doctor because it could increase bleeding risks.

Beach_Mom said...

I frequently see members list the nutritional supplements they take such as fish oil, B-12, etc.  I would like to explore this more for my daughter but don’t know where to begin. I’ve looked for a nutritional therapist who specializes in Crohn’s, but no luck. I’ve thought about consulting a health food store too.  Any ideas of where to start?  How do you know what to take?  And do any of these supplements/vitamins adversely affect the traditional medicines? She is currently taking 1200 mg/ day of Asacol and we are hoping to start Cimzia soon.  

For me, I take supplements at the direction of my physician. I've also asked about various supplements over the years, but I don't take anything w/o getting doctor's opinion. (I know there are varying opinions just on that issue.)

Of the non-medicinal stuff I take:

Multivitamin - this is one I've been taking since diagnosis over 20 years ago. I've taken a variety of multi-vitamins over the years, but most recently I've been taking a Flinstones chewable vitamin with iron. The chewable vitamin I takes seems to have the same ingredients as the one-a-days and don't mess with my stomach as much as the others.

Iron - Not currently taking a separate supplement. I've had to take this off and on over the years as you can develop anemia with this disease, especially when flaring. The regular iron tablets have always been difficult for me to digest. When I've had to take iron, I go with the "slow iron" slow release capsoles. I believe regularly taking a multi w/iron has really helped me avoid iron tablets recently.

B-12 is a self injection monthly. Since my (and many folks) crohn's is at the terminal ileum, which is where B-12 is absorbed. Dr tested me for this in April 2009, and I've been on B-12 ever since. B-12 deficiency is a type of anemia that can cause all sorts of other problems if left untreated.

Calcium - a daily oral pill. I was given a bone density scan about 18 months ago and diagnosed with osteopenia. Most likely cause is a combination of poor absorbtion and 20+ years of off and on steriod Rx.

My calcium pill is a "+D" as the D vitamin helps with calcium absorbtion.

I've asked my doctor in the past about fish oil & probiotics. Her preference is that I ingest what I need from this category of supplements from my diet. she advises me to eat fish and eat yogurt, but doesn't believe that the amounts in pill form would be of any benefit to me. She doesn't "forbid" me from trying it, but I've stuck with her advice for the past 16 years I've been going to her.