Maintenance and Flare Management Protocal

I’ve just passed my second anniversary of having Ulcerative Colitis (diagnosed Sept '11). I’ve had numerous flareups, but to date have been able to get back into remission without extending beyond basic prescription drugs (Lialda/Rowasa). I figured I’d put a post together that details what I have learned. All of this information is easily grabbed from other sources but it is probably nice to have a more comprehensive post about it. My number one goal since I was diagnosed was to never have to advance to Prednisone or any of the other more advanced drugs. Thus far I have been successful, but only time will tell if I will continue to be successful…btw, definition of remission for me is fully formed bowel movements no more than 1-2 per day with no urgency and no blood.

Maintenance protocol when in full remission:
Lialda (2 pills per day)
Diet (No sugar, no alcohol, limited carbohydrates, high protein, high fat)
Homemade yogurt using raw milk (I go through one gallon of milk a week)
Add other cultured foods when I am able to
Standard Process Okra Pepsin (2 capsules two times per day, 20 minutes before meals – breakfast/dinner)
Standard Process Gastrex (2 capsules two times per day, 20 minutes before meals – breakfast/dinner)

Flare management (the kitchen sink approach):
Lialda (4 pills per day)
Slippery Elm Bark – Heaping tablespoon 2x-3x per day (use powder, not capsules)
L-glutamine - 1 heaping tsp taken at night on empty stomach
Ther-Biotic Complete Probiotic Powder (1/2 teaspoon twice per day)
Medical Marijuana – Indica strain, vaporized, used every other day
Rowasa (mesalamine rectal enema, 1x per day at night)



That protocol above typically knocks out a flare within a few days. I’ve tried tons of other natural products including VSL #3 (I think the sugar in it or some other ingredient always bothered me), psyllium seed powder, curcumin, and many others but those items never had positive effects and in some cases had negative impacts. I should probably take the ther-biotic probiotic as part of the maintenance protocol, but it gets too expensive so I only take it when flaring. If you have the money, highly recommend you stay on it or VSL #3, though again I found ther-biotic far more effective for me.

I’ve also completely transformed my diet eating nothing but grass fed beef, pasture raised eggs, 100% organic fruits and vegetables, cheese from grass fed cows and use raw milk for my yogurt. This has significantly increased my monthly food costs and I have no idea if it has any effect on my UC but I do believe it has had a positive effect on my overall health. I’ve had to sacrifice spending in other areas of my life but I’d rather downscale my living standards a bit and put that extra $100 or $200 a month into nutritious, wholesome food.

I know what works varies drastically from person to person, but I remember when I was first diagnosed I did a ton of reading and had to look at a variety of sources to find what worked for people. Everything I listed in this thread has been proven to work for me through repeated trial and error (i.e. when I stop the standard process okra pepsin and gastrex, there is a noticeable deterioration in my UC symptoms). What works for me may not work for you, but it may be worth a shot.

fruitgirl said...
Have you ever tried keeping your Lialda dose higher and using enemas 2x/week when in remission? That might help stabilize you so that you don't have flares quite so often. Or maybe just do the enemas 2x/week and drop to just 2 Lialda. I've been in remission for 4.5 years now, and have no intention of stopping the enemas completely.

I like limiting Lialda when possible since it does have some long term side effects even if they are unlikely. Continuing the enemas would be smart but I get lazy when I am feeling well and also start to slip a bit on the diet. If I stayed on the enemas and strict diet, I could probably extend my remissions quite a bit.

fruitgirl said...
I'd really make an effort to try using the enemas twice weekly. I personally think it's best for your long-term UC "outlook" to keep things as calm as you possibly can, so to speak.

I agree, thanks for the input. I'll give it a shot and try to add enemas 2x per week.

greenuc, that's great you have a system and I hope it continues to work for you as described. That said, don't get overconfidence and assume your uc will always be "well behaved" and "predictable" as those are two phrases rarely used to describe the course of uc as a lifelong illness. As uc is prone to spread, increase in severity, require unexpected hospitilization even among those of us who play by all of the rules, take our meds and listen to our gis. I think the biggest thing for you is to be open to any medication available to uc, rather than say I'll never take pred, remi or whatever. As you may need to take them someday in order to maintain your current quality of life. Because in the end all these treatments do is make our quality of lives bearable, there is no cure, there is no freedom from uc while we're still breathing lol. There are some here who are philosophically against a med and they end up suffering in quality of life because the won't take the next step, class of med, or won't take the leap to surgery. I think surgery helps those in the worst case scenarios.