How long on EEN before your child had solid motions again

[padrach3]

Hello All. I'm sorry you all are here but it's a great resource.
My son was diagnosed with Crohns disease at aged 3y. Like many of you his growth was fine as were his bloods but his calprotectins were very elevated. He had a E Coli UTI at 4 months and had antibiotics for that and them regrettably maintenance antibiotics for 6 months. He started having diarrhoea after that init febrile UTI. The consultant was sure that he didn't have IBD despite me having UC (diagnosed at 20 and pouch since 22yrs)
His scopes showed granuloma +ve focal gastritis and granulomatous pan colitis. He had been started on sulfasalazine and init was improved but then started to disprove again. I noticed him to get worse when the dr increased the dose. After 6 months on this my wife put him on a diary free and gluten fee diet and he bowel motions were solid. We increased the dose of sulphasalazine again and the bloody diarrhoea came back but when we stopped his motions became solid again. All of his calprotectins up to last April were < 100. He isn't coeliac and no one could explained the results to us but we were very grateful.

Unfortunately he relapsed May '24 with watery diarrhoea and urgency - usually 1 twice daily. seemed ok otherwise. mildly anaemic, abc cup normal but calprotectin was > 1800. Scopes again showed pan colitis. He tried the CDED with 2 weeks of EEN. He improved after the 2 weeks of the EEN but seemed to go back to baseline then. Repeat calprotectin after phase 2 of the CD-ED was again > 1800 and some of the motions had blood and he had a lot of urgency/tenesmus
He had MRE which apart from showing colitis might show some mild inflammation in a jejunal loop but this could have been due to artefact they said as the jejunum was under-filled. Plan was EEN 6-8 weeks and start methotrexate.

He is compliant with the diet - now we are 3 weeks into it and he seems a little improved (no blood and urgency reduced) but still goes 1-2 times per day watery diarrhoea and calprotectin still up.

I know we are lucky in one sense that it seems mild/mod disease but frustrated that he hasn't responded as before when trials suggested that it probably doesn't matter whether disease in predominantly in small bowel or colon. How long was it until you call saw an improvement/back to normal? Thank you all for your help.

 

[my little penguin]

That is not mild disease with a fecal cal of 1800.
Did you already start methotrexate ?
Sulfanazine is effective for UC but not for crohns.
Is it pills or mtx shots ?
You may need steriods plus een since he has been flaring for a very long time .
My kiddo started remicade at age 8 After failing Pentasa and mtx.

Een can take a while to work but typically you would have seen improvement by 3 weeks.
Gluten and milk can irritate a gut when inflamed and then be fine when calm .

Definitely talk to your pediatric Gi and let them know he is still having watery diarrhea.
How old is your child now ?

My kiddo will be 21 so many many years of this .

 

[padrach3]

I forgot to say the when we put him on the GF/dairy free diet we stopped the sulfasalazine and his bowel motions and calprotectins remained normal for over 3 years. I know there is no scientific explanation for that but there you go. Hasn't started methotrexate yet. I think they plan on methotrexate pills. Thank you very much for your help - hard to find info on paediatric IBD and answers to questions about what to expect with the various treatments

 

[kiny]

Scopes again showed pancolitis.

He tried the CDED with 2 weeks of EEN.

Pediatric patients with colonic disease do not respond to EEN. Neither do patients with UC.

Any dietary manipulation has to involve the ileum which takes up nutrients. The colon does not take up nutrients.

What EEN can do is help children with nutritional deficiencies, but it has no effect on inflammation if the ileum is not involved.

https://link.springer.com/article/10.1007/s10620-005-2864-6

I know we are lucky in one sense that it seems mild/mod disease

Well, FC of 1800 for weeks and bloody stool is anything but mild disease.

frustrated that he hasn't responded as before when trials suggested that it probably doesn't matter whether disease in predominantly in small bowel or colon

It matters, EEN specifically works for people with enteritis, it works wonders in "typical" crohn's disease involving ileitis, inflammation of the ileum, it also works for SIBO. EN does not work for colonic disease or gastritis, it would be surprising if any diet worked for colonic disease, the colon does not absorb nutrients.

 

[kiny]

As far as diarrhea.

EEN serves 2 functions in crohn's disease. In the 70s and 80s it was used to correct nutritional deficiencies, until Segal and others noticed that it also rapidly decreased inflammation. So now EEN exists to correct nutritional deficiencies and get people into remission.

All these studies involved patients with ileal disease. Words like "Crohns collitis" did not exist. If you had no ileal involvement, you had UC.

There are plenty of people who still have diarrhea on EN, but do well. Diarrhea in people with ileal crohn's disease is likely caused by ileal bile salt malabsorption, even people in deep remission still show abnormal bile sat absorption. As long as remission is maintained, this is actually not a major problem.

But again, bile salt malabsorption does not explain diarrhea in people with colonic disease. It is likely a different disease, and it is very unfortunate some GI do not properly distinguish these diseases, because you end up with misconceptions and treatments that don't work.

 

[padrach3]

Thank you all. As an update My son's motions solidified with no more blood urgency etc after 4 weeks of EEN- currently 1 motions every 1-2 days. He completed 6 weeks in total and is now on methotrexate subcut injections - he has had 4. Hoping for the best....