Daniel

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Aug 26, 2012
Messages
3
Daniel my son was diagnoised a year ago . He was in remission but now the crohns is active again. the Doctors are recommending he goes on biologic therapy. They are suggesting Humira which is taken with a needle or and infusion Remicade Both are suggested could cause some form of cancerRemicade. we don;t want to trade one for another diease. Also hear alot on about changing diets and knowing what foods trigger his cohns, he has kept a log of what he eat and when he suffer from cramps. no hints yet what triggers it. Also they talk about vitamin D on hear. New to all this confused. Like to hear from anyone with ideas or experince with all of this .

Dennis [email protected]:stinks::stinks:
 
Read up as much as you can about the disease and various methods people use to natural control/relieve the disease symptoms. I am reading up on a study now by a Dr. Borchanev in Russia (?) on using probiotics to reverse symptoms. It deals with certain bacteria strains found in some probiotics (doc told me Healthy Trinity and Yarrow are two brands that have it). I was told to use up to 5/day if I have a bad day, then wean down to 1/day as better. I have found this to be particularly helpful. Remember to look at what your son is drinking in addition to eating. Unless it is water, it is probably going to both him. Get as clean and natural a diet (no preservatives) and you may find some improvement and relief for him. Bottom line is to figure out what causes the inflammation in colon, then eliminate it and keep him off it for as long as possible, if not permanently. NO carbonation, hot ginger tea (also can be served room temp) will help him with digestion or discomfort, One day at a time! Good luck!
 
Think it's hard to step away from medication as a kid, there are other medications. But outside of medication there are things like cannabis, supplements, herbs that have specific properties, but assuming he is a child, that's stuff that I can't recommend.

And diet hmm, there are 3 macronutrients, fat, protein and carbs, all 3 are energy sources, and you changethe balance to one of the three, and you could argue that avoiding carbs is good and slightly tipping the scale to protein is good. But again it's a child I assume, proteins are hard on the liver, a child can't tolerate the same things an adult can I feel, if a child is still growing you can't just cut something out and assume they will develop fine by using a diet that's not sufficient in everything, people go overboard in it too, and I bet by eliminating tons of stuff you end up with deficiencies which is likely far worse than the stuff you're eliminating.

I'm totally against the eyeball approach of eyeballing what you ate and then deciding based on that if it caused issues, I have had crohn for 12 years now, I got it as a kid, I'm now an adult, there is no way no how that you can reliably find foods that make your disease worse or better with the eyeball approach, you don't know how long that food has been in the small intestine, you don't know if the food was related, you don't know if it was the food or anything else you ate. If you start elimination diets you end up with nothing. At any one time there are millions of bacteria and thousands of nutrients in the small intestine, how can you possibly know what made you flare by eyeballing it. On top of that it's even more complicated because each food has different macro and micronutrients, and not every fat / protein and carb is alike. I am totally against that approach, it's like shooting an arrow blindfolded hoping you hit something. Sure, go look at studies and try to eat based on those, but making your own diet, that has never worked for me. I'm not smarter than researchers.

Probiotics is also not something that has shown much benefit in all studies, and it's often in combination with inulin that it offers benefit, inulin = carb, that can also feed certain bacteria which could make the disease worse. It's not a magic bullet.

I can't help, but I feel sometimes people go overboard because they read something somewhere from someone, going from medication when someone has bad crohn and saying "hey someone give me a quick solution like a diet instead" = recipe for serious disaster. It's not that simple.
 
Last edited:
Hi Dennis,
I totally understand where you are comming from I felt the same way with my daughter. We did end up trying remicade and humira briefly and with much reluctance. Neither went well. Then someone of this forum told me about two other treatments. The first one is enteral nutrition and the second is a medication called low dose naltrexone. Look under the treatment part of the forum. The first one EN did not work for my daughter. The second has been our miracle. Caitlyn has been on it since last January and is greatly improved.
 
We just started Remicade.
The risk of cancer is very low compared to under treated crohn's.
( something like 4 in 10,000 vs. without biologics anyones risk is 2 in 10,000 for the t cel lymphoma).
Also bear in mind if your child rides in a car risk of death 1 in 250.
Hope you find treatment that works.
DS also supplements with EN.
 
Hi Dennis...don't you hate when you are humming along nicely and BAM!

My daughter has been on Remicade since February...I echo MLP's sentiments about risks. And as far as immune suppressing goes she is the healthiest one in the house. However, while Remicade did the heavy lifting it wasn't getting her 100% there so we were advised to add another med. Rather than add the med we used Enteral Nutrition which has been shown to be just as good as steroids with regards to reducing inflammation and even better at mucosal healing. That did the trick for us.

Since he is already on a med maybe simply adding EN to support it would work?

**edit** I assumed he was on a med but see you don't mention it...is he?

Also FWIW - our doc and nutritionist do not believe in controlling Crohns with diet. They say it can definitely make you more comfortable while flaring but diet doesn't cause a flare nor will it heal one....just one doc's opinion
 
So sorry Crohn's has reared its ugly head! We had a 2 year remission interrupted also. My son is now on Remicade. I was very reluctant to take it because of the cancer risk, so we went to a wellness dr and starteda half dose of remicade. He got better, but still ended up in the hospital. The GI made me realize that leaving crohn's untreated posed more of a risk than the biologic therapy. So we bumped up to a full dose of remicade and added methotrexate shots.

I know that it's scary to weigh the risks. I have a hard time with making the right decisions for someone else (my child at that)! Do some reading up on the meds. If you can't control it any other way, then get it under control. That's the important thing.

We also take probiotics, fish oil, digestive enzymes and a host of vitamins! Also done a sugar, corn, wheat, dairy free diet and none of it worked alone. Our GI also says diet won't fix it alone, but it sure does help! The naltrexone sounds intriguing, but our GI won't even discuss it!

Good luck with the decision making!
 
Hi Dennis and :welcome:

I am so sorry to hear about Daniel, what a difficult time for you all. :hug:

Would you mind telling us a little of what has happened in the last year so we may be able to better offer some advice and experiences?

I hear you about your fear regarding the medications, we all do. Is there any harder thing on this Earth than making these heartbreaking decisions for those that we love more than life itself? I think not. Please have a read through this and hopefully it will allay fears and uncertainty somewhat...

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

...as untreated or under treated disease also comes with its own set of risks.

Kim has pointed you in right direction to some other treatments you might like to consider if they appropriate for your son's circumstances.

Good luck and welcome aboard!

Dusty. xxx
 
Back
Top