Anyone on drug free remission - and what did you do to get there?

I would like to hear some experiences out there. I of course ackknowledge that we are all individual.

But I would like to learn about your paths to remission and how it works out ?

Thanks !

most of the folks in remission don't spend a lot of time on this forum - they are out in the world kicking butt, not sitting in front of a computer -

but there are a few still around ;-)

I was in a drug-free remission for 15 months. I credit the 3 grams of curcumin I took every day for putting and keeping me there.

I'm not sure what caused me to flare this September but a few days after I bumped up my curcumin to 6 grams a day, I started to improve. I'm almost in remission again, 3 weeks after the increase.

To be fair, I'm also taking Uceris, cortenemas, and Prednisone. But I was on those for several weeks before adding the additional curcumin. During those weeks, my improvement was minimal.

My next move is to add resistant starch and psyllium seed powder to the curcumin. I'll probably decrease the curcumin in a few months, too.

natkayeg, Welcome to the forum.

Here's how I achieved my remission and I consider myself drug free.


Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) curcumin is an important anti-inflammatory
6) astaxanthin and omega 3's are also important
7) food combining
8) diet modification as in gluten and dairy free, Paleo diet
9) rectal meds help lots of folks out

Despite the decrease in symptoms, I was still BLEEDING very heavily at every BM. The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission. Within a week of starting LDN, the heavy bleeding ( too many times to count with blood clots and mucuous) which I had had for 1 1/2 years straight, went down to ZERO. And that is all thanks to LDN!

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

I was also in drug-free remission for about 15 months. This past August, my symptoms started back up again, very very slowly, and while I'm not currently in remission, I am still drug-free, and doing everything I can to maintain good health.

For me, I have done a LOT of diet and lifestyle modifications. I have always considered myself healthy and having a healthy diet, but have changed my diet to more paleo and no "healthy whole grains" like I used to eat. I take vitamin D3, L-glutamine, probiotics, fish oil, and calcium supplements. Basically my diet is mostly paleo (and I used to be mostly vegetarian, so that was a big change for me).

I really can't say one thing, or even a combination of things, that led to remission, but I got there, and I'm 100% sure I"ll get there again.

FWIW, my UC has been mostly the constipation type, not violent diarrhea. I have been able to live a pretty normal life with it more as a background nuisance.

Good luck to you, to everyone, drugs or not.

InSoFla said...
Here's how I achieved my remission and I consider myself drug free.

fyi: If you are taking LDN ever day then believe it or not you are not "drug free".

I was gently encouraged (beat over the head) by my guardian angel (or guardian demon lol) to be drug free because I am allergic to mesalamines.

And there was no way in hell was I ever going to do the big gun meds with big gun side effects. (Except no other way to avoid having to endure another bloody flare again, lol).

My signature summarizes what works for me.

Here is an excellent thread explaining psyllium seed vs husk and how to obtain the seed:
www.healingwell.com/community/default.aspx?f=38&m=2152224

To be honest I never ended a flare thru diet, antibiotics are what jump-started my remission. But after the flare ended I can maintain remission thru diet and supplements. (so far)

A food diary works much better when you are in remission. I could experience bloody-free, formed stools for weeks and still, if I have something bad like a Starbucks hot chocolate for lunch, then for sure bloody diarrhea that evening. But I don't know how a food diary will work if you are in a constant flare all the time.

Two very common triggers are gluten and dairy. I suggest avoiding gluten for 2-3 weeks to see if your symptoms lessen. Then try the same for dairy. If I were in a severe flare I might start out with a safe food such as chicken broth until I reached a state of somewhat normalcy. Then add different foods individually to see what happens.

qvist asked
- Food diary: How long do you give a certain food to have the (bad) effect then? I mean do you feel it after hours or will it be something you ate the day before or maybe two days before that initiate the problem? This is to me the mystery/obstacle to monitoring intake and effect - How fast do the body react to whatever is bad?

Different foods will have different reaction times based on my extensive research/testing on me
Everyone reacts to different foods but some of the common non-tolerated foods are: wheat (gluten) and dairy, caffeine (of course), fruit and juices, sugar (inflammatory) and especially sugar-free stuff (evil).

Gluten and wheat products are present in many, many pre-packaged foods and sometimes they are not listed in the ingredients. I was told after testing that wheat was not a problem for me but 2 years later when I decided to remove it from my diet my bad symptoms started getting better and it was due to stopping wheat/gluten. The reason I didn't stop gluten sooner was because it did not have an immediate gut reaction with cramps or a noticeable symptom. In fact bread seemed to stop my BM's but that is because my gut cannot process wheat so like throwing a ball bearing in a gear assembly.

Was that all it took? No, my gut was still very inflamed and non-tolerant of many foods including: all dairy, almost all fruit and fruit juices and did not like a lot of fiber. It took a long time of diet changes and eliminiations before my gut was healed enough to try some "out" foods again. Today dairy is not a problem but I still keep wheat and gluten out and rarely eat fruit (no juices).

Some things, like caffeine, are immediately rejected by my gut and others (like fruit) may take overnight to be rejected in multiple BM's.

You are the only one that can do this food testing. Start by keeping a food journal to keep notes and you will begin to see a pattern. If you see no improvement in 2 months then food may not be a problem for you. It is not easy modifying your diet, especially over the holidays. But Rx meds never helped me so I had no other choice except surgery.

Good luck.