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Assistance of supplements still = remission

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Ulcerative Colitis
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Posted 11/13/2012 1:25 PM (GMT 0)
For those who use supplements everyday, do you still consider yourself in remission if you use those supplements to ease your symptoms everyday? (eg. Slippery Elm for urgency, Psyllium Husk to bulk stool, DGL to reduce mucus, Peppermint tea/oil for reduced cramps, Probiotics etc.)

If so, shouldn't one not need those 'helpers' if you were in remission? I ask because my symptoms will more or less disappear if I use those supplements but I was told, on these forums, that I was not in remission.
Posted 11/13/2012 1:34 PM (GMT 0)
If youre having normal BMs and youre not taking heavy meds (like prednisone) I would call it remission. Its not like if you missed a two days of taking the supplements you would instantly flare right?
Posted 11/13/2012 1:34 PM (GMT 0)
Max, that's a good question.

While flaring I used to do the slippery elm/probiotic cocktail after every meal. Now I do it just once a day.

I still do the protein shakes with all the supplements, the L-threonine amino acid at night, and of course the LDN, in spite of being in total remission.

I believe in being proactive, and in general like to err on the side of caution if at all possible.  But frankly, IMO - it's not a big deal, it's part of a successful routine I'm used to, and I'm doing great, so I have no intention of stopping any of it. :-)

Why are people saying you're not in remission?

Posted 11/13/2012 1:48 PM (GMT 0)
I think you are confusing remission with cure. If your symptoms are gone then you are in remission. If you can eat anything you want without taking any meds or supplements, and still have no symptoms then you are "cured".

I have not heard of anyone who was ever permanently cured. This means nothing because if anyone were cured then they probably wouldn't continue to post on the forum.
Posted 11/13/2012 1:58 PM (GMT 0)
Thanks guys. I am grateful for everyone's opinions and advice, I was just confused because I do have a few 'rough edges' in terms of symptoms but nothing too unmanageable. I do find that if I just take 1 tablespoon of slippery elm with a cup of warm water in the morning, all my symptoms disappear. I go from having looish type 4 stools (on the Bristol chart), random sensations of having to defecate, random abdominal aches to firm type 3s, no sensations of defecation or aches.

Of course I still take my meds/supps and continue with diet restrictions, but overall, I am much better.
Posted 11/13/2012 1:58 PM (GMT 0)
I think that I'm in remission and I still take meds and my probiotic supplement. Remission to me means no symptoms, no imflammation, and no pred. I don't think you're in remission if you're on pred, because it isn't a maintenance med.

It sounds to me like there's a small chance that you still have some active inflammation, and the supplements help curb the symptoms that inflammation causes, but maybe the symptoms are due to IBS or some other non-IBD cause.
Posted 11/13/2012 2:48 PM (GMT 0)
I actually thought I was "cured" (or, to be more precise, i thought that I had been misdiagnosed) during a ten year total med and (except for occasional, maybe monthly, IBSish episodes for a day or two) symptom free remission. The funny part is that I eat and drank anything that I wanted and took no meds or supplements during that remission, whereas now I try everything under the sun (and that includes stopping things that make things worse) and nothing gets me in full remission. IBD can be wacky like that, and I am convinced that a great many (though not all) supposedly supplement-induced / maintained remissions are in fact merely spontaneous remissions.
Posted 11/13/2012 3:04 PM (GMT 0)
I am convinced that a great many (though not all) supposedly supplement-induced / maintained remissions are in fact merely spontaneous remissions

Probably some med-induced / maintained remissions as well.
Posted 11/13/2012 3:21 PM (GMT 0)
If supplements helped me, I would continue them while in remission but I tried a bunch when I was in a flare up with absolutely no positive effect so I don't have much faith in them working for me.
Posted 11/13/2012 4:13 PM (GMT 0)
I think there are several ideas crammed into one thread here.

Idea 1: no symptoms. If you have symptom remission, it would be key whether you had visual and histological remission. Anything less is really just simmering below the clinical symptoms level.

Idea 2 remission vs cure. If you are genetically susceptible to IBD, but never had a flare, nobody says you have IBD, or are just in remission. If you have a flare every couple of years, but achieve histologic remission in between, the consensus is that you are in remission. If you have a flare, achieve histological remission, and never, even over decades without maintence program, have another flare, then what is the difference between remission and cure? Even if you go for a decade without maintence, and then have another flare, why is this not just having you genetic susceptibility triggered twice, instead of remission? At some point it is semantics.

Idea 3. supplements for inducing remission vs maintaining. There has been some clinical research providing evidence that for some folks anti-inflammatory supplements either add to the benefit of 5-asa or seem to rival the benefit. The point is that just because something cannot induce remission, is no reason it cannot help maintain remission.
Posted 11/13/2012 10:53 PM (GMT 0)
I have had UC for a long time.  Early on, I think there were periods that I went into "spontaneous" remission.  My understanding is that in the first 10 years after diagnosis, that is not uncommon.  After a while, my UC became so chronic that only prednisone and Remicade really worked.  Unfortunatly Remicade quit working and the effects of prednisone were probably worse than the UC. 

For me, I wouldn't put all "supplements" into the same category.  I have tried many and am now only taking what you would call supplements, but no prescription drugs.  I am symptom free.  Is it a spontaneous remission?  I doubt it.  After so many years of having this disease, I don't think spontaneous remmision is possible.  Mary

Posted 11/13/2012 11:26 PM (GMT 0)
In my opinion once a person got ulcerative colitis, the damage to the colon is very severe. Can it be completely healed and restored to the level of before the colitis? I am not sure. I believe that our colons will still be sensitive to the irritants like too rough, spicy or very acidic foods, or even extra stress, to the end of our lives.
I am in remission now for about 7 months. I can eat just about anything I want within a reason. Certainly I am not doing anything stupid. I have learned my lesson. I am not taking any specific to the colitis supplements, just some vitamins and minerals. Not even probiotics. Do I consider myself cured at this point? No, at least not at this point. I want to give it much more time.
Posted 11/14/2012 12:51 AM (GMT 0)
imo, if someone were to offer me a million bucks to be in remission, i would do anything and everything to get there - but would it be worth it ?

there would obviously have to be a tangible definition of remission - so what exactly would that be ?

and my answer to all of that ..................... WHO CARES ?

not me - it's just a word - much bigger things to fret about -
Posted 11/14/2012 10:25 AM (GMT 0)
Agree with ya 100% soystud! I dont care what its called I just care about not crapping blood every 30 min!
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