New to crohn's, poll on therapies

I can't rate them all. I would just give my first priority to taking the right meds.

Biologics are the current state of the art treatment. There used to be a slow build up to these meds, and it's still a popular approach, but more and more GI's are opting for a top down approach, of starting earlier with biologics, so the disease doesn't get a chance to do the harm it's know for.

Only other thing I could add, is don't discount lifestyle and diet. It can certainly make a big contribution to your overall health. You just can't rely on that only for a treatment programme.

1) Diet is a known treatment for Crohn's disease, but it has no more lasting effect than steroids. If diet works, then generally you have to stay on the diet for it to keep on working. I doubt 'stress management' does much of anything at all, ditto 99% of supplements. 3

2) For me, 0; in general, 7. If you're lucky, the meds work, but nothing works forever. The biologics are currently the most effective but also the most prone to randomly stopping working one day.

3) I have no idea. It's not been tested beyond a couple of tiny pilot studies.

4) Never heard of it. If it's a steroid though, then it's a bad idea, so 0.

5) 1 for Crohn's. It seems to be a bit better for UC but not by miles. Maybe when there is more understanding about gut microbiomes this will become a much more effective, personalised treatment but for now I don't rate it highly for IBD.

6) Sounds like a crank therapy. 0

7) Unknown! People respond so variably to the same drugs, foods, etc., that it's impossible to predict how they will respond to one thing, let alone a combination of several.

I rather enjoyed that :p

hahaha, I think all of the supplements, etc. that you mentioned have all been tried by most of us. Almost zero difference. The only diet that has had any real long-term effect for anyone has been the Simple Carbohydrate Diet (SCD), but even that is hit or miss and doesn't last for very long. Seriously, if it were as easy as supplements, we (the IBD community) would have figured it out loooong ago. :)

I have had almost zero problems from Remicade. It has literally saved my life. The day of an infusion and maybe a day or two afterwards I'll be tired, maybe even a migraine. If I get a cold, it lasts a little longer than for anyone else. But seriously, that's it. Some people can have extreme reactions to it, but people can have extreme reactions to Tylenol if they're allergic or something. The chances of it happening aren't very high at all.

Honestly, I feel like most of the supplements out there claiming to help with inflammation and autoimmune are a bigger waste of time and money than just doing biologics. Acupuncture kind of helped me a bit, but definitely not long-term (I had to go at least 3 times a week, sometimes even daily, and never hit real remission). The FMT helped, but that was from c. diff. and it kept causing flares. I don't think it would have solved the flares on their own.

I know a mini version of this feeling gypsyfp, I struggled 2.5 years with an osteopath taking all kinds of supplements for my hpylori infection because the 'doc' didn't think I could handle triple therapy...finally I went for it and enjoyed several years of normal life....that same osteopath had no problem giving me 3 months of antibiotics for prostitis, which turns out, is chronic, possibly viral in nature, and when I learned that I went off the antibiotics. I'm sure that set the stage for the lovely spot I'm in, with my small intestine narrowing, only liquids can go through. I can't get Remicade til Tuesday, on top of all this diagnosis stuff I'm moving to California tomorrow and starting a new job...I have a Tuesday Gi doc appointment lined up at Palo Alto medical, eventually I want to get started at ucsf...if anyone can recommend a good clinic in the Bay Area of California I'd sure like to know.

Has anyone had luck with fasting? It does suppress the immune system, just wondering if intermittent fasting is useful when you have a flare and can't get meds

Jdoublej said...
Has anyone had luck with fasting? It does suppress the immune system, just wondering if intermittent fasting is useful when you have a flare and can't get meds

It might help with symptoms, but it won't stop the underlying disease in the slightest. I did intermittent fasting for years (not that I knew it was called that, I just went as long as I could without eating) and my disease continued to get worse.

If you think you'd have no problem in following a strict diet, then maybe something like the SCD would work better. I'd be a bit wary though. Have heard stories of people being on the SCD, feeling fine, and then having a bowel obstruction out of the blue. As you already have narrowing, you seem particularly at risk of this. Frankly I'd just go on Remicade and, if it works, you should be able to eat anything you like within reason.

Everyone is very individual with their disease, it's all trial and error for each of us really.

I've been suffering for 25 years and only been decently treated with meds in the last couple of them due to developing a rectovaginal fistula and was put on Humira (my GI asked me to choose between Humira and Remicade at the time so I chose Humira for convenience. It finally put me into my very first ever remission...my CD mainly affects my colon so it's referred to as crohn's colitis basically since it's CD affecting the colon...it often affected my rectum and stayed constant with the perianal crohn's skin tags (which is actually how my disease started--- see how individual this DD can be?

I had no choice but to rely on diet, supplements (bee propolis which actually cut me down from 30 to 15 bowel movements a day....I always love when others "scoff" at supplements or diets to help especially those who don't even try it first) some patients like myself that were either severely allergic or unresponsive to traditional oral meds used for crohn's had no choice but to try other alternatives. Sadly although I was able to find slight relief the damage was still being done with all the inflammation which is likely a strong reason why I ended up developing the fistula...dropping down from 30/day to 15 although it still isn't great, when you're desperate you'll appreciate any little improvements even if your life still feels like a living hell after 2 decades.

Take suggestions and opinions with a grain of salt, research as much as you can and use your instincts as well because the simple fact is it's very individual for us all on many levels and sadly what does help/work for others doesn't work for all...your'e not wasting your time trying supplements for example, if you find something that actually helps...becoming bitter can happen easily and it's understandable cuz this is a tough chronic illness for us to go through but I also found meditation daily as well as yoga/exercise very helpful...it's sad many ridicule healthy ideas such as those when those 2 things alone can aid greatly, but like I said, we're all different.