Crohn's Disease Forum » Tests for IBD » Crohnís - Prometheus

04-25-2015, 03:00 PM   #1
KRX's Avatar
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Crohnís - Prometheus

I saw a 2011 post on this and hope itís alright to start a new one.

My gut is questioning if my son's Crohnís dx is correct. Please share any information.

My son was dx with Crohnís 1 year ago at age 17. The EGD show some ulcers and later a colonoscopy was done that showed inflammation of the terminal ileum and some villi blunting. The biopsy was by radiology was considered negative. The doctor then submitted bloodwork to Prometheus and my son has markers for both Crohnís and Celiac and his antibodies were elevated for Crohníís. My sonís case was taken to committee for difficult cases and a different radiologist read it as positive.

My son only presenting symptom was upper abdominal pain. No anemia, or other issues often associated with Crohnís. Budesonide and prednisone did nothing for him and he was started on Remicade. After 6months on Remicade his sx have not improved and last EGD showed ulcers and my son was not cleared out enough at them time to get results on the Lower GI. The doctor felt Remicade was not working the way it should. (antibodies and level checked were fine). I wanted to try dietary intervention and he was put on a the SCD diet (did not help), followed by Boost Plus only for nearly 3 months which worked and then we started reintroducing foods and he did very well on GF and low fructose diet until he got to the point that he was sick of being on a restrictive diet as a teenager (3 months on a liquid diet for teenager is a lifetime). It was also suggested to try tube feedings at night and eat normally during the day (my son vetoed). Remicade is still NOT controlling his pain and the doctor just rechecked antibodies and levels again which are fine (test is a pain to get through insurance). Methotrexate was started and the doctor wants him have his next treatment and then get re-scoped in June. Depending on what that shows he recommends Vedolizumab (another $20K drug) and biologic.

Iím sorry this is so long. My son goes to college in the fall and I hate the idea of him either staying on his current treatment or the recommended due to the immunosuppression (he is getting constant colds). I would like to find some medium ground during his college years.

Natural solutions may not always be the answer however i would have like to try to see if some dietary changes (not extreme) and supplementation would help and then during his college years if needed put him on a lower level medication. Iím really struggling here. My son and husband want me to research and essentially make the decisions however I am trying to educate my son so that he can make informed choices. Iím overwhelmed and have a feeling I may be up for a fight if the doctor isnít agreeable.

I would greatly appreciate any insight you can share. Thank you so very much.
04-25-2015, 07:46 PM   #2
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Clash's Avatar
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I would be concerned about moving down in meds when the big guns aren't working.

My son has had CD since age 15, he is 18 now. He was on high dose remicade plus methotrexate injections. At one time he did use ng tubes for overnight formula while still eating during the day, this was for weight gain. He only agreed after learning he could place tube in the evening and remove when he woke up. He was 17 when he used by tube.

Anyway, the high dose remicade plus injection mtx could not quell his inflammation although he was asymptomatic. We finally decided on surgery since the inflammation was affecting his ability to gain weight.

Maybe you could get a second opinion or even a records review by a leading pediatric IBD center.

My son starts college in the fall, he will be on humira shots and mtx injection if they are proven efficacious. I wish we still had the choice of remicade(he developed antibodies after surgery). I like the simplicity of having GI appt, infusion and lab work done in one visit.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-25-2015, 08:28 PM   #3
my little penguin
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My kiddo is only 11 but was dx at age 7.
Immunosupressants like remicade plus mtx do NOT make you more likely to get common things like colds . The only time they come into play is with heavy duty oportunistic infections . DS has survived without more than normal childhood illness the 2nd through 5th grade on them . Not to say if you have a bad bactrial infections doctors will be cautious with the immunosuppresants/biologics to make sure the infection is treated with antibiotics
But that is about it.

Agree that if the big guns are failing it's going to be hard to try lesser meds.
Flaring is not recommendd since these are very hard to get under control the second time around.

Second getting a 2nd opinion at a major pediatric IBD center.
We had DS out twice for 2nd opinion
Most good GI will welcome the second opinon as a fresh set of eyes .

As far as options have you looked at humira or simponi ?
Food options are EEN or partial en on an extremely restrictive diet (15 total foods)
Both have shown to induce remission /healing but are not long term solutions .
Other studies show if you add supplement ( few shakes a day ) en to biologics the biologics work long.
DS had normal trough levels but no antibodies when he was on remicade
We still had to increase the dose and frequency to get results .
DS - -Crohn's -Stelara -mtx
04-25-2015, 08:31 PM   #4
my little penguin
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Paper on partial EEN diet
DS is doing this in addition to humira/Mtx /pred( arthritis flare )

Also check out the parents group
And parents research section
04-26-2015, 01:54 PM   #5
KRX's Avatar
Join Date: Apr 2015
Thank you for the replies.

Thank you for reminding me about 2nd opinions with a major IBD center. I had not thought of that but it would benefit us on many counts, and put my concerns to rest.

My sonís doctor felt Humira would not work since Remicade has not been effective from the start. Why that is I donít know and have not had the opportunity to talk with him about it yet.

The essentially elemental diet my son was on followed by systematically reintroducing foods was the only thing that has been successful in stopping all his symptoms. He was on the Remicade during that however. As soon as diary, sugar (?fructose), and gluten were reintroduced all his sx came back. I have EoE and it just makes me wonder if foods are a bigger issue for him especially with the blunting. I know diet doesnít cause Crohnís, Iím just hoping it will help control it.

You may be right about the lesser meds not woking if the big guns donít.

Again thank you. I see that my post was moved to the parents section so Iíll follow up there.

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