Crohn's Disease Forum » Your Story » New Member Looking For Help

10-03-2017, 01:35 PM   #1
Twin Mommie
Join Date: Oct 2017
Location: California
New Member Looking For Help

I am a new member to this group. My son was recently diagnosed with CD and he is just 11 years old. His twin brother is fine.

I have been looking online at the medications and diet. I don't want my son to be on Remicade because of the risk to cancer. After seeing the first GI specialist he wanted to put him on this infusion. Yes. I know it will help with symptoms but it is the cancer risk I cannot deal with. So I am going to see another specialist soon.

My son has no abdomen pain...just a picky eater. This thing is compromising his growth patterns. He had an endoscopy along with a colonoscopy with biopsies. All is normal except inflammation at the terminal ileum.

Any suggestions that you can pass to me would be greatly appreciated.
10-03-2017, 03:42 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. You might also want to post on the section called Parents of Kids with ibd.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-12-2017, 10:52 PM   #3
Lady Organic
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hello Twin mommie and welcome.

I understand your concerns about medications. I have the same concerns myself and I take another medication that also increase cancer risks. I have no choice, as I have tried so many alternatives and diets. The risks of cancers are still being extremely low on these drugs.
On the other hand, under treated or untreated CD is far more concerning. IBD can be silent and still cause lots of damages that can culminate in surgeries or other complications. The goal of any doctor will be to cut down the inflammation process as soon as possible.
Enteral liquid diets are effective at putting disease in remission in a high proportion of CD patients but this type of diet is very challenging to maintain in the long term and years. You can ask the GI for it and they can prescribe it. A few food diets are being studied in clinical trials at this time as some people say they really help them. But most doctors wont talk about them to patients since there is no solid scientific evidence yet. Food diets are very difficult to fallow too in the long run. IBD-AID in my signature is one of these diets.
I am hoping you can find a consensus with the dr that will reassure you. Silent disease activity (no obvious clinical symptoms) is not a status that should be maintained. It is a situation that must be addressed asap in order to avoid possible risks of further evolution of disease or complications. Wishing all your family well.
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-15-2017, 04:09 AM   #4
Join Date: Oct 2017
Hi Twin Mommie,

I am so sorry to read about your 11 year old son. I feel as though the more I look into Crohn's Disease, the younger the victims get.
I was diagnosed with Crohn's when I was 19- and I am coming up on my 1 year diagnosis.

My gastro- great guy, tried every trick up his sleeve when it came to medication. I tried Azathaoprine, Mercaptoporine, Allopurinol, and finally I started self injections last week. It was been a pain in the butt (also in a literal sense) to get my head around.
What I'm saying is, is that there are plenty of alternative- all play with horrid side effects, although the cancerous theme there is most detrimental especially given a long term treatment. Ronrush has the idea of numerous alternatives when it comes to medication.
I think you are on the right path to what you are doing- seeking another specialists help. Seek numerous if you have to. Follow your mothers intuition but most importantly listen to what your son has to say.
In terms of diet- I feel as though there is no specific diet one must be one when they have UC or CD. Your son is a 'picky' eater because he knows that particular foods will make his tummy sore or his poo funny and this will eventually become second nature to him and as he adapts, the household adapts with him.

In terms of growth patterns, take very good care of his joints. This thing will make them ache and being on steroids for long periods of time will have severe effects as well.

Twim Mommie- you're doing a great job.

Ps. I think it is rather interesting that your twins do not share the same chronic illness. Have there been suggestions your other twin may develop CD later in life? Or were your twins no biological?

Interesting stuff. Remarkable Biology is...

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