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On EEN, how long does it take to go into remission?

Cucurbita

Cucurbita

Hello,

First time on EEN, it has been 17 days already. Bleeding has decreased and symptoms have improved slightly. The number of bowel movements remains constant (from 4 to 8), that is perhaps 1 or 2 lower than before EEN. But it doesn't feel like the remission is close.

I was wondering how long did it take for you to get into remission (and specify if symptomatic, clinical or endoscopic).

According to a paper [1], of 23/29 patients (79%) that achieved remission on EEN:
- C-reactive protein (CRP) needed 22.43 ± 23.96 days to become normal.
- Erythrocyte sedimentation rate (ESR) needed 59.05 ± 49.13 days to become normal.
- Mean time to reach mucosal healing was 123 days (ranged from 50 to 212 days)

How was your experience? I know it depends on the person, but it's good to have a reference.


References:
[1] Chen JM, He LW, Yan T, et al. Oral exclusive enteral nutrition induces mucosal and transmural healing in patients with Crohn's disease. Gastroenterol Rep (Oxf). 2019;7(3):176–184. doi:10.1093/gastro/goy050
www.ncbi.nlm.nih.gov

Oral exclusive enteral nutrition induces mucosal and transmural healing in patients with Crohn's disease - PubMed

Oral EEN therapy is highly effective for inducing mucosal healing in CD patients. Both CD patients at active stage and those at clinical remission show excellent clinical response to oral EEN.
www.ncbi.nlm.nih.gov www.ncbi.nlm.nih.gov
 
H

happy

You won't want to hear this, but for me it was four months of VivonexPlus exclusively. Then when I started eating on a full elimination diet, I flared badly enough that I had to go back on formula for two weeks. It still took me a good six months after that to get some energy back and I would really say that it was a full two years before I was feeling really well.

However, I was doing most of this on my own for a variety of reasons and I had lost an extreme amount of weight so I was very malnourished to begin with. And yes, my remission was verified endoscopically.

Try to be patient and check out the parents' section for some tips that they use for their kids who are on EEN. There used to be a section under parents for EEN, but I see it is no longer there. Try searching in that section under EEN and see what pops up. Good luck!
 
Cucurbita

Cucurbita

happy said:
You won't want to hear this, but for me it was four months of VivonexPlus exclusively. Then when I started eating on a full elimination diet, I flared badly enough that I had to go back on formula for two weeks. It still took me a good six months after that to get some energy back and I would really say that it was a full two years before I was feeling really well.

However, I was doing most of this on my own for a variety of reasons and I had lost an extreme amount of weight so I was very malnourished to begin with. And yes, my remission was verified endoscopically.

Try to be patient and check out the parents' section for some tips that they use for their kids who are on EEN. There used to be a section under parents for EEN, but I see it is no longer there. Try searching in that section under EEN and see what pops up. Good luck!
Click to expand...
Thank you for sharing your experience! After reading it, I have several questions.

Did you get complete mucosal healing after the four months on EEN? If so, the bad flare afterwards was so unfortunate!

Sometimes I find these things difficult to understand... I mean, in Crohn's disease there seems to be some disconnect between clinical symptoms and endoscopic activity. Is that what happened to you? I mean, do you think that's why you felt sick for so long, even though you didn't have endoscopic activity? I think they say mucosal healing is associated with longer (clinical) remission, I'm sorry that it didn't happen to you.
 
H

happy

From the scope I had after the four months, I had complete mucosal healing, but I don't think I had started to eat food yet. Most studies have shown that, just like stopping prednisone (if that is what put someone into remission) the symptoms will return when the treatment is stopped. So EEN is thought to change the gut biome and this is what stops the inflammation. Once food is introduced the gut biome changes again, and if the diet is not changed, soon the conditions will return to being good for the gut inflammation. Now research is suggesting that certain diets may help to maintain the remission achieved with the EEN.

So, even though I went on a full exclusion diet after my EEN, meaning that I tested each individual food for several days before allowing it to be part of my diet, it is not actually a big surprise that I flared once back on food. This is common while one is testing food and the advice is to go back to formula for a few days until things settle down again. Because I had gotten so much better on the EEN and I knew about the gut biome theory, I wanted to get the bowel flora back to the reset level of no inflammation before food testing some more. Grains were really tricky to food test for me, so it took me awhile to figure out that I could not tolerate any cross-contamination with gluten and that I was sensitive to oats and corn. It was the oats and corn that caused the flare. I have tried to add back both foods since and I have started to have symptoms again each time. Because I am so much healthier now, once I stop the offending food, I get better in a few days.

My first scope after I got really sick was about four months before I started EEN. My disease was in the terminal ileum and probably would have been classified as mild to moderate by thickness, however, they cannot scope very much of the ileum, so who is to know how much of the ileum was diseased at the time? And yes, the severity of my symptoms were worse than the scope seemed to imply. The flare after resuming eating probably occurred about three to four months after resuming eating. So the offending foods probably took that long to really get the inflammation going again.

Although the process was long for me, don't feel sorry for me. I still recommend people give EEN or partial EEN followed by an exclusion diet a try if they want to. I am very fortunate to only have my specialized diet as my treatment (and some Vitamin A and Vitamin D supplements as I still don't absorb these well from food sources).

I think I felt sick for so long after achieving remission from being malnourished for so long and from the difficulty (for me) in getting through all the food testing. So I was probably malnourished for about 18 months at least (from when I first got really sick to about 6 months of eating food again on the diet after stopping the first 4 months of EEN). It takes a long time to come back from that.

Here are some links about EEN and exclusion diets (most of the research is on kids):

www.healio.com

Crohn’s Disease Exclusion Diet well-tolerated in children

SAN DIEGO — The Crohn’s Disease Exclusion Diet appeared to be an effective and well-tolerated, first-line therapy for children with mild-to-moderate Crohn’s disease, according to data presented at Digestive Disease Week. “We have emerging data to show the strong influence of the environment, and...
www.healio.com www.healio.com

www.ncbi.nlm.nih.gov

Dietary Therapy With the Crohn's Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological Therapy - PubMed

Dietary treatment combining PEN with the CDED may be a useful salvage regimen for patients failing biological therapy despite dose escalation.
www.ncbi.nlm.nih.gov www.ncbi.nlm.nih.gov

European Crohn´s and Colitis Organisation - ECCO - Update on elimination diets

ECCO - European Crohn´s and Colitis Organisation. The European Crohn\'s and Colitis Organisation is a highly active non-profit association focusing on Inflammatory Bowel Diseases (IBD).
www.ecco-ibd.eu www.ecco-ibd.eu

(Most of that info is from another member here, my little penguin)
 
G

Guerrero

There are interesting studies on non exclusive EEN that seems to work. Check out this : https://mymodulife.com/

I’m doing a kind of non exclusive een myself as i have strictures etc... taking modulen instead of food for dinner except the weekend. It helps me a bit easing symptoms, but no idea if i’m healing or not...
 
G

Guerrero

Regarding how long it takes for een to put you in remission, i think some studies showed results after 8 weeks (pls double check, and do some research as i’m not sure)
 
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