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Crohn's Disease Forum » Parents of Kids with IBD » Supplements/Nutrition


01-25-2015, 07:04 PM   #1
malorymug
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Supplements/Nutrition

I'm on the medication bandwagon. My husband and his mother aren't. She believes very strongly in holistic healing and has sent us a series of supplements that she calls "nutrition". Company is Standard Process. They claim it will promote intestinal healing. They are Okra Pepsin E3, Chlorophyll Complex, Gastrex, and Cramplex as needed.

I have mixed feeling, my kid is doing well with the first dose of Remicade and I'm still tippy toeing around his health, holding my breath. I don't want anything to derail his health. I have my doubts about their effectiveness and concerned that they might cause my troubles. I feel like the only reason to do it is to appease my mother in law.

I plan on running all this by his GI, but in the mean time, what are your thoughts about supplements that claim to be able to help Crohn's? They are endless on the google.
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
01-25-2015, 10:00 PM   #2
Farmwife
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Hugs, hugs and more hugs.
It's hard enough to make these decisions and then to have people second guess it.
It's even harder when you know the people are doing it out of love for your son.

Well it's hard for you to tell with all the meds my daughter is on but I once consider myself holistic in approached.
My dear hubby and I spent a small fortune on products.
Even went to a highly rated holistic doctor but my girl only grew worse.
In the end and after allot of research (mlp trying to talk some sense into me)
I had to realize that we're taking about the body attacking its self, not a nutritional deficit, not a curable disease but a chronic life long battle.
I needed to give Grace the best chance at a normal life.

Now with all that said. Maybe you can appease the hubby and mil and start talking about certain foods to help. Probiotics can also be a good thing to add.
Their are a lot of things you could try to help the whole family without taking your child of meds.

I'll tag in crohnsinct . She's become our nutritionist guru.


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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-25-2015, 10:27 PM   #3
Jmrogers4
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I have so been there, still am on some days. After years of little to no growth or weight gain when we finally started remicde and things completely changed around for him. All I here now is how healthy he looks and then the next sentence is usually some supplement or other that is supposed to help with digestion. I have to remind her that yes he is healthy and isn't it great that we have found something that is allowing him to have a normal life.
For every article she send me on some new "natural cure" for Crohn's I send her a paper on the latest research of new meds and treatment. I know she does it because she loves him so I politely listen and remind her of how bad he was before the meds allowed him to reach remission and I certainly don't want to do anything to rock the boat and be in that awful time again when everyone was so worried about him.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-25-2015, 11:35 PM   #4
DustyKat
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When it comes to vitamins and minerals I only supplement to deficiencies and thatís it. They are monitored via blood tests and adjusted accordingly.

The only other thing taken at our end is Turmeric which has enough reputable studies to back its use in Crohnís. Sarah also takes some supplements to counteract the effect of some foods she canít tolerate that is then compounded by being vegan.

As to my thoughts in general about the plethora of supplements available, well these are my thoughts only and not intended to offend as everyoneís mileage varies:
  • I detest the big pharma argument when I have yet to see an alternative practitioner not charge hefty prices for their own time or products.
  • Their products are not regulated. I am concerned about the where and why fore of prescribed meds so why shouldnít I be about supplements.
  • I donít buy the one size fits all approach. AKA, we cure everything.

All that said I am not saying that there arenít those out there that benefit from supplements, my two certainly do, but I do not think they are a substitute for a well researched and proven treatment plan that is supervised and monitored by a specialist.

Dusty. xxx
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Mum of 2 kids with Crohn's.
01-26-2015, 03:41 AM   #5
Sascot
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That's a really difficult one. My mom keeps going on about how you can cure Crohns with juicing and some types of supplements. I just have to smile and nod - I know she is only trying to help.
That's good you are running it by the GI, whatever his opinion you can use the visit to tell your mum-in-law no if you don't want to risk it.
I would also be nervous to try anything new if things are okay - I am even paranoid about silly things like trying a different brand of multivitamins
01-26-2015, 07:59 AM   #6
MamaHenn
 
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I don't think that most GI's would put much stock into vitamins and supplements, after all they'd be out of a job if they all did what they claim to do. That said, this is YOUR child and no matter how well meaning and caring she is, you have to do what is best. I like the idea of telling her you talked to the GI and he said no if you don't want to risk it. I also do think that diet changes and supplements can help along with medication.

We're in a somewhat similar boat with my MIL. We're finally succumbing to the medication bandwagon after a year of trying diet/LDN, we have an appointment on the 20th to talk meds. DH told MIL and she goes on and on about not doing Humira. DH finally told her to essentially butt out and we'll do what is best for our kid. It (thankfully) shut her up 😉 good luck!
01-26-2015, 09:43 AM   #7
Pilgrim
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I understand the frustration and also probably the mixed feelings that are within you as a parent.

I felt guilty for doing the meds when my daughter ended up in the hospital for a med reaction.

Then when she was doing much better at the end of an EEN cycle I went full force SCD (diet).

Within two weeks she went from great to bleeding, etc. So, we decided to go with Humira.

She's doing well on the med right now, so I try to push the advice aside in my mind. People still suggest a good regimen of Aloe Vera Juice, Auto-immune diets, and more. Instead of arguing, or even really discussing it, I remember in my heart that they really just want to help and be supportive. Usually I will say, "Thank you so very much for thinking of H, I will look into that" But I don't offer info about what we are doing for the Crohn's.

Harder with a husband. Although I have to say that my husband was pretty freaked out by the idea of Humira. One thing that helped was photocopying good studies that gave percentage results of mucosal healing with biologic drugs. Maybe if he's a reader, you could go there?

Other option is, as was mentioned above, run the supplements by the GI and do all of it concurrently, the meds and the supplements.
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
01-26-2015, 09:57 AM   #8
Tesscorm
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My son drinks 1-2 Boost shakes per day - to provide additional vitamins/minerals. Even though he's on remicade, I've stuck with the nutritional shakes rather than multivitamins for a number of reasons - it gives him extra calories, it sometimes replaces an alternate 'unhealthier' meal (ie he'll grab a shake instead of a fast food breakfast sandwich), I read a study that show supplemental EN increased remicade's success rate (although I know he's below the calories from formula indicated in the study) and I also hate to change anything in his routine (even a multivitamin).

He also takes vitamin D and krill oil (fish oil).

As far as 'helpful advice' - I guess we all hear it from well meaning relatives... But, I've found that when you can discuss 'details' in an knowledgeable and objective manner with the well meaning relative, they generally back down. If someone (my mom ) suggests a 'treatment', I ask questions like... which part of the intestinal system does it target? How is it that it helps? Has it shown to offer mucosal healing? Our specialty pharmacist told us to exclude certain supplements because of immune system boosting, how does the supplement you are recommending impact the immune system. Rarely can they answer the questions and I think it makes them realize there is more to the decision than simply following 'I heard that this works...'

They are also only making their suggestions because they care and are worried; after a discussion as above, I think it also makes them realize that you are, in fact, very much on top of it and their worry lessens.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Last edited by Tesscorm; 01-26-2015 at 10:26 AM.
01-26-2015, 11:06 AM   #9
Optimistic
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Hi Mallory Mug.

I don't have any wisdom to offer, but I wanted to wish you well as you navigate this ugly maze. I too have a teen son with IBD. My favorite recent suggestions are he just needs Juice Plus (ffrom a sales rep, surprise), and whether it is all In his head and he just needs to practice mindful meditation. Why yes - those pathologists, radiologists, gi, and lab workers all conspired!

I am thrilled to hear he is doing so well. I hope that continues for a long time.
01-26-2015, 02:02 PM   #10
crohnsinct
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Ah yes! I have heard plenty. I am also a very holistic type and took my daughter to two world reknown functional medicine docs. Both agreed that IBD is indeed not curable and further is rarely even controlled with natural methods alone. Also as Dusty said, the supplements etc they sell are very expensive as are their office visits and the upward of $5,000 in lab testing they run!

For us, in an effort to try to limit the number of meds or the dosage of each med, my daughters are on, we have adapted an anti inflammatory diet. No supplements other than dr prescribed...just really good food...keeping out as much of the toxic junk as possible.

O has had amazing results with the diet. While her meds were doing a fine job it wasn't until we started the diet that we saw tremendous growth, weight gain and all her blood results were returning great. Her GI can even tell when we are little lax in the diet and is quick to request we get back on track.

So while I agree that meds are necessary, I also think there is a lot we can do to help promote healing...especially since the drugs bring their own set of problems.

Now, all this said, the functional medicine docs have told me that while they do not feel they can treat IBD, they do think they can work with a GI. THey also feel they can identify people who are at high risk for developing the disease and put some measures into place to either delay or stall it. I can't comment on that as I never had them look at my younger daughter and she has developed the disease(yeah lots of guilt)....and before you ask...no, she was not 100% on the anti inflammatory diet (more guilt) so I don't even have my own little study here. However, the GI did ask me and when I said no and he shook his head then asked her to get on board.

I agree with everything said above! I might also add that while some supplements etc have a very valid place and have been well researched, many are dangerous when mixed with the drugs our kids are on. You are smart to check with your GI and never start a supplement regimen without first checking.

Oh yeah...and I am a juice plus user and believer! I personally think it is an excellent nutritional product. I am so sorry you encountered a sales rep with a poor message!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-26-2015, 02:26 PM   #11
my little penguin
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We give family and well meaning others
"Thanks I didn't know that "
If they push we state we follow what his doc tells us .
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01-26-2015, 02:28 PM   #12
crohnsinct
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We give family and well meaning others
"Thanks I didn't know that "
If they push we state we follow what his doc tells us .
MLP! There is no credibility in that statement because everyone knows YOU KNOW EVERYTHING!
01-26-2015, 03:15 PM   #13
DanceMom
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My MIL has been through cancer, so she thinks all other illnesses pale in comparison. She just asked me yesterday when could A stop "getting other people's blood." Sometimes I reply with a witty or sarcastic response. Other times I take deep breaths and let it go. Depends on my mood really. Anyway, I feel for anyone not getting full support from friends and family. None of us make these medical decisions without really thinking it through and doing what we feel is best for our kids.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
01-26-2015, 03:18 PM   #14
Mehita
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I think our GI would be pretty amazed at some of the things he's supposedly said to me over the years *wink, wink*.

The one that gets me is "so and so cured herself with product x". Really? Well, if it were as simple as that, I think a million other people would be interested. Hmm... they're not.

I like Tess' approach. Bombard her with questions, ask for the scientific studies, ask about safety for pediatric use, bring up the immune system issue. All politely, of course.
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
01-26-2015, 03:56 PM   #15
Tesscorm
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Very politely!
01-26-2015, 04:53 PM   #16
lenny
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At least they care. My son's extended family don't seem to care one bit. No calls, cards or gifts. Just crickets.

One asked resently, "Is he still sick?" They assumed when he left the hospital in March of 13' that he was fine.

Callous idiots.
01-26-2015, 08:06 PM   #17
malorymug
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Thank you all, so much for your understanding. I knew you would! Once I hit post I started second guessing myself and thinking I should have posted in the supplement section of the forum. But as you all know, it is different when it is your kid instead of yourself.

I appreciate the suggestions, empathy, and similar stories. And most of all, thank you for reminding me that they do this because they care and are trying to help. I may have lost sight of that for a bit.
05-02-2017, 09:12 AM   #18
djohnson7789
 
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I was taking Cimzia for 3-4 years along with Imuran 150mg/day. This was just keeping me afloat with my symptoms, no better, no worse. I decided to stop the cimzia in november(to the dismay of my doctor), I started Acupuncture and chinese medicine in March and simultaneously stopped the Imuran. I have been taking Chlorophyll, and Gastrex (From Standard Process) as directed by the acupuncturist and I must say, this treatment is lightyears beyond what Cimzia and Imuran were able to do for me. It has given me numerous symptom free days and has even allowed me to drink alcohol with 0 side effects. I understand that everyone's body is different.. but I will continue the eastern medicine as a complete alternative to western medicine because it is very clearly working for me. Colonoscopy in July to measure the progress.
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