For those that take low / no meds - how is that working for you?

I've been diagnosed with UC for ten years and over the ten years have had different approaches to flare ups. In the past they'd always seem to last 6 months whether or not I took medication and after the 6 months was up the flare up would resolve with or without medication. In the early days I saw a nutritional therapist who gave me some useful advice about my sugar consumption (it was very high at the time of diagnosis). Sometimes I'd have 1 - 2 year remissions but that's the longest I've had over the past 10 years.

In the past 2 years I've had a flare up for 6 months with 9 months remission then another 6 month flare up. This January I finally ended up in hospital after the 6 month mild to moderate flare up suddenly became severe following a virus that started in the throat and went into my chest.

Steroids don't work for my UC, not even IV steroids so for the past 6 weeks I've been on azathioprine / mercaptopurine and ciclosporin (cyclosporine) to bring the severe flare up under control but I'd like to go back to avoiding strong medication.

So any advice from others who've had UC long term and have experience of controlling flare ups with natural remedies (slippery elm, aloe vera, turmeric, omega 3 etc etc) and diet (no sugar, low dairy etc)?

How long do your flare ups tend to last? How long are your remissions? I know every case of UC is different but I am just curious to hear from other long timers.

Post Edited (UCyousee) : 2/25/2014 6:05:03 AM (GMT-7)

soystud how severe is your UC and on wich meds you were before?

are you in endoscopic remission, or just clinical? I don't know how smart is to be long period without maintenance meds ( Asacol), my second flare was after reducing asacol to minimal dose, after 3 years remission. ..
You can describe how sever it was by simptoms you have: number of bms, blood, diarrhea, cramps, etc..

soy isn't convinced he really had UC in the first place, so take it with a grain of salt... he just sticks around because we're fun

I myself know I could never be without taking my meds. I do taper down how many pills a day and how often I use the rectal meds so that when I see anything unusual happening I can turn around and increase the meds back up.

I don't take meds either. My signature summarizes how I maintain remission. I will only add that I could be sailing along just fine (la-de-la-de-la LOL) with no urgency and formed stools for weeks: but then just one hot cocoa from Starbucks at lunch for sure means bloody diarrhea that evening. Go figure.

No doubt that if I continued indulging in my verboten food list then I would soon be in a full-blown flare no matter how many supplements I take.

Imagardener2 said...
Rx meds never did anything to reduce my symptoms over 10 years and I had lots of blood, lots of diarrhea, lots of urgency and diagnosis of left-sided. Over 10 years I went through all meds available except biologicals which were next up according to my GI.

The only med that helped by reducing/stopping bleeding was mesalamine enema (never used steroid enema but did take oral steroid Entocort with no improvement).

Faced with starting biological Rx I tried diet mod. one more time after multiple non-success over the years and many different versions of diet mod including SCD.

Today: I am in remission due to diet modification which is closest to Paleo but I also eat nuts and potatoes and some dairy. Yes that's not Paleo but that's the closest I can name my food list, sorry.

I continue to take (9) Balsalazide daily. Why? Balsalazide was doing nothing to help me but diet got me slowly better over 1-1.5 years of diet tinkering and healing. But...I didn't want to change anything as I got better. Balsalazide is affordable and no side effects. I also took VSL#3 during my path to remission and think it was helpful. Today I only take probiotic Pearl Reuterii.

My GI said Balsalazide reduces inflammation so I liken it to taking aspirin (which I don't) as a preventative.

I attribute my remission to diet, no question on that.
No bleeding in a loooong time, probably 1.5 years. I still have enemas ready to pounce on it but they are aging. I also have Canasa sups, ditto.

No diarrhea in 1.5 years except I can have multiple BM's if I eat something greatly disliked by my gut. Perfect BM's again and again until gut has removed offending food/supplement. The last one that did that was a spice in something I baked (ground cloves) and before that it was gel caps of oil of oregano supplement. I call this IBS not UC.

1-2 BM's per day after drinking 2 cups of half-caff per morning.
No other symptoms except high stress mornings BM #'s get higher.

This is great advice that you most likely will never hear from a G.I. But this can be invaluable for newbies to be made aware. It won't help everyone but just think the benefit you would have received if you read a post like this 10 years ago.

When I was flaring my symptoms were as severe or worse than just about anybody else that I have read about here. But there is no doubt that I am one of the lucky ones who is able to manage this disease largely thru diet. I have seen cases here (killcolitis, bananagirl, etc.) who have tried everything from alternatives, to diet, to drastic meds, I mean everything, without receiving any relief. I appreciate how lucky I am and I wonder how long it will last.

One factor that might be in my favor is that I have never taken any meds other than Colasol for a few days before discovering that I am allergic to it. There are some studies, mostly from Europe, indicating that once you start taking UC meds, just like taking meds for blood pressure, cholesterol, etc., it is more difficult to get off of them without reigniting symptoms.

I guess most of the people who are on little or no meds no longer participate in the forum.

I stop in from time to time but you can see from my signature below how i eventually cured myself with a complete lifestyle change. I still take lialda daily but only for maintenance...for now.
I had fulminant UC for 8 years that only the strongest biologics helped sometimes. I tried alot of different things but it took changing every aspect of my life before i became normal again.

I take one in the morning. I think its 1.2 grams.
I tend to forget to take them sometimes too

BabeintheWoods said...

One factor that might be in my favor is that I have never taken any meds other than Colasol for a few days before discovering that I am allergic to it. There are some studies, mostly from Europe, indicating that once you start taking UC meds, just like taking meds for blood pressure, cholesterol, etc., it is more difficult to get off of them without reigniting symptoms.

This is interesting. I think it makes sense though. Do you have links to the studies?

I am on a fairy low dose of sulphasalazine, eating AIP diet (paleo with some further restrictions) and just started a very low dose of LDN. I thought I may be mesalamine intolerant, or at least that they did nothing for me, and went without meds for a week, started to flare, went back on them. If I go off my diet and eat something sugary or junky, I start to flare. So I seem to be able to stay with lower doses of meds as long as I'm very strict with diet. Hoping that will change once I'm finally in remission.

Guardian7 said...

Coffeemate said...
I guess most of the people who are on little or no meds no longer participate in the forum.

This would be my guess too. ;)

Hi,
I'm a low med user... I'm thinking tonight I might take a mesalazine supp as I have the tiniest hint of blood and minimal cramps ...I think may be sex caused? .. Any way I'm usually in remission with diet which I think is working again ...trying to keep it at bay so might try one.

Also i accidently hit ignore user to someone who posted this ...ppl are no longer in the forum post... I don't know how to undo it lol
...help?
:)

The only med I'm taking is 20mg prednisone (weaned down from 60mg, will be off it in a few weeks). Modern meds did nothing for my flare, and I got a bunch of side effects.

If you're not on meds, the key to getting better is going to be diet modification to heal your gut, and gut flora balancing. Commercial probiotics are mostly ineffective long-term. They work temporarily in some cases, but once you stop taking them, there is no permanence. Natural ferments are the only thing that'll recolonize the gut, I'm finding. The bacteria in yogurt, whether commercial or home made, is transient... it passes right through, but does some cleansing along the way. Kefir bacteria actually colonize, I'm finding, and the research shows this.

As for me... still recovering, but very slowly. I haven't seen blood in about 2 weeks which is nice. I have the energy to leave my home for about 2 hours a day now, and I can drive again.

My protocol right now is milk and water kefir that I've made myself, and a high calorie / nutrient dense liquid diet. The liquid diet consists of very hearty soups put through the blender, as well as other smoothies using specific fruits I can tolerate. I tried introducing aged cheese this week because it's lactose free but it didn't go over well.

Here's an example of a hearty soup I made just last night:
Base is bone broth that I made a big batch of on low simmer for 2 days (beef marrow bones, chicken carcass, beef knuckle bones)
Then added:
- squash
- carrots
- collard greens
- shiitake mushrooms
- kale
- broccoli
- leek
- chicken breast
- fresh garlic, turmeric and ginger
* everything I use is organic, chemical free, and the meat is grass fed, non-medicated

When I want some, I put a portion through the blender and add a raw egg yolk.

I tried the GAPS and SCD diets but they were brutal. I don't think there's a one-size-fits-all approach and the food choices have to be very individual, though I totally respect people who find that these diets work for them. I support whatever gets us out of UC hell!

I believe that the amount of time it takes a flare to subside, whether you're on meds or not, is going to relate to how gentle yet nutrient rich your diet is, how much you reduce stress in your life, and how you choose to repopulate your gut with flora.