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We had to do EEN to keep things under control for over a year while on Remicade because the Remicade was not very helpful (and may have been making things worse). If we had dropped EEN during that time I think he would have been in the hospital facing major surgery within a matter of weeks. As...

There are a couple of ways this can go wrong: 1. Sticking with something that may or may not be working but certainly isn't working well enough out of fear that changing strategies could make things worse. 2. Putting up with too many side effects on a semi-effective drug. Anyway, you always...

For the record, this idea has caused major problems for me and my son, and I believe much more in moving on sooner rather than later if something isn't working.

I'd be thinking about a new doctor, personally. Calling it autoimmune is a big red flag for someone who's not keeping up. Diet won't "cure" Crohn's, but EEN is a very effective treatment. There are various reasons why Humira is almost certainly not going to be a life-long treatment. All of those...

You can always try tweaking diet, but I doubt you will get very noticeable results unless you go to something as extreme as EEN. I wouldn't expect too much from SCD. My advice to you would be to talk to your doctor about the continued weight loss, etc. The Humira should have stopped weight loss...

Crohn's can be a very, very tricky thing to get under control. The first thing I would recommend for any kid with Crohn's (and most adults, too) is to try out exclusive enteral nutrition (EEN). This is where you drink only formula for a period of time. Often, people see almost immediate results...

Reddit has a crohn's board, but people there are much less knowledgeable overall

Fecal calprotectin is a very good test for diagnosing intestinal inflammation (not always IBD). You really can't be sure of an IBD diagnosis without a colonoscopy, but fecal calprotectin does seem like a pretty good thing to start with. If it turns out to be normal, then there's a high...

Sounds like Humira alone isn't working or isn't working well enough. I think there are basically 4 main options next: 1. Add EEN (with a tube if necessary) 2. Add an additional medication such as methotrexate 3. Increase Humira dosage/frequency 4. Switch biologics Personally I recommend 1 and...

Persistently enlarged lymph nodes are a fairly common covid shot reaction. They should get better over the course of 6-8 months.

https://academic.oup.com/ecco-jcc/article/15/Supplement_1/S336/6286525 Here's a recent small study comparing the two. Results were similar. I'd take the safer one. "In a real-world cohort of bio-naive UC patients, VDZ was superior to ADM in achieving endoscopic remission at W52, while in...

Given the choice, I'd certainly go with Entyvio. It's not nearly as dangerous. Also, in my reading of the studies it seems that Entyvio does work for small bowel Crohn's and there's not even a large difference in efficacy depending on location. I would not avoid Entyvio simply because the...

My son's experience: anti-TNF (Remicade, which acts similar to Humira) made things worse, may have increased inflammation, had some bad side effects. Entyvio: may or may not have helped a little bit, had milder side effects.

That GM-CSF paper is interesting but not *that* impressive. It's a small uncontrolled trial, and CDAI is a poor measure. Why was that never followed up on? Did the people working on it just decide the results weren't impressive?

I've never noticed a problem with chocolate. My son doesn't drink coffee, and we can't tell if chocolate does anything worse to him than all the other foods. Bone broth would probably be good for him, but he's never been willing to try things like that. Good idea though, maybe we should try...

Continued stricturing and possible fistula despite plenty of infliximab says to me that most likely surgery will be necessary. This all sounds familiar. I wouldn't expect too much from any of the biologics under those circumstances, but EEN could also help keep things from going way out of...

I'm personally not a Crohn's patient (my son is), but I have found coffee to be harsh on my digestion while black tea has been very good for my digestion. I now drink several cups of tea a day, and it's been a noticeable improvement.

I'd be thinking about TPN and no food to keep up her nutrition and reduce inflammatory stimulation for now. I'd also be thinking about antibiotics just in case there's a bacterial component. Check out the IRIS following infliximab and natalizumab withdrawal sections here...

I don't know exactly if she's coming off Entyvio and Humira right now, but if she is this could be the immune system waking up and either fighting off all the things it would have been fighting off for some time or just overshooting as it wakes up (see Immune Reconstitution Inflammatory...

The fecal stream experiments are great, but they don't tell us why some people are susceptible while others aren't. Would healthy people react the same way to the fecal stream? Is Crohn's due to ubiquitous bacteria that only affect some people due to particular susceptibilities, or is Crohn's...