Posted 7/22/2015 6:15 PM (GMT -6)
A few people PM'd me after my last post and were asking me what I did to achieve remission so quickly, and asked if I would share it with the community. So here I am. This will likely be my last thread, unless somewhere down the line I get a crazy flare and I come back to admit how wrong I was. I'm hoping that never happens though.
Modern medicine rescued me from the emergency state I was in back when my first flare started. They did so with supportive therapy such as IV of essential electrolytes. When I originally went to the hospital I was having 25 bloody BMs per day, extreme pain, etc... all the usual stuff we hear about. However, after the first week when I was no longer immediately dying, things continued to go downhill. They put me on high dose IV prednisone, remicade, 5-ASAs... none controlled the condition, and I had bad reactions to others.
When I was discharged because I refused surgery and they had no alternatives to offer me, I had to go home and figure this out. At the time of discharge I was having 15 bloody BMs per day, but quantity per BM was less so I wasn't losing nutrition as fast. At home, all I had was my mother and a couple of friends to take care of me in my bedridden, emaciated, and tortured state. It was a total nightmare.
I started doing extensive research. I started with herbs and supplements, but they mostly didn't help or they made me worse. I experimented with different foods... some I could tolerate, while others I couldn't. Most foods still hurt like hell because my flare was still active, so food in general was not that big of a help.
I then consulted the SCD diet and the GAPS diet. SCD didn't work at all... I think because I was so malnourished and underweight that depriving my body of carbs was a really bad idea. Now that I'm in remission, I find that limiting (but not eliminating) carb rich foods is useful. The GAPS diet was the first thing that clued me into how war-torn my GI was and how I needed to start very basic, and very delicate. What I thought of as "delicate" before learning about GAPS was still misinformed. I started taking bone broths with raw egg stirred in, and sometimes a bit of rice noodles if I could handle it. But still my progress was very slow. I was starting to have neurological symptoms like focal seizures, and heart irregularities, because I was just not absorbing food.
After being bedridden and basically unchanged for over a month, I was starting to lose hope. A relative sent me a magazine that talked about colostomy survivors and their healthy, happy lives... and I was starting to wonder if maybe that was the route I was headed, because nothing was working. I got very depressed: my first flare and I'd have to get surgery. It was starting to feel devastating. Everyone was worried about me and were preparing for me to die. I was basically skin and bones.
Eventually I touched based with someone in the United States who has had UC for 20 years, and her husband has had CD for equally as a long. She has helped many people with UC who conventional treatment wasn't helping. We had long phone conversations about her diet and lifestyle, and mine. We traced my history all the way back to childhood, and started hammering out a plan for my very survival. This took daily re-evaluating. It was exhausting and I had no idea if it was going to work or not, but it was seriously my last hope.
So here is what we came up with that eventually worked.
#1 and most important is home made kefir. I started with water kefir because those were the only grain cultures I could track down, but eventually I was able to obtain milk kefir cultures. Milk kefir is superior, it contains about 35 species of probiotic bacteria in the trillions, whereas water kefir tends to have about 8-10. Finished milk kefir has no lactose in it, but if you're allergic to milk casein then it still might not be good for you. Bearing in mind that I had tried all the major commercial probiotics and none of them worked, I was skeptical, but I made the ferment anyway.
The first time I took kefir I was advised to take only one tablespoon a day but I ignored this and drank half a cup. The herkxheimer (die off) reaction was extremely intense and I regret it. The next day I had full on bloody bowel movements, pain, urgency, fever and exhaustion... I was terrified my flare was re-intensifying. But after 2 days of this state, my health bounced back to being more improved than ever. I kept taking the kefir each day, once in the morning before eating and once at night when the day's eating was done. My inflammation disappeared in 3 weeks and my blood work confirms this. It was eventually the kefir which reactivated my digestion, reduced inflammation, repopulated my gut with flora, and got things under control. I credit 80% of my recovery to this ferment alone. I did also use home made sauerkraut juice (the whole pieces of cabbage were too rough) and this helped a lot too, especially with protein rich meals.
Even if you don't believe that your UC has anything to do with gut flora, or you are skeptical, I *highly highly highly* recommend you try giving home made kefir a try. The only way I can see it harming someone is if they have SIBO, but that usually wouldn't affect someone with UC in their large intestine.
The absolute best website on the internet for kefir info and how to make it, is Dom's Kefir Site. This guy has dedicated his existence to kefir recipes, kefir research, and helping others get kefir grains. I consider him one of three authorities in the world on this subject whom I trust implicitly. He also has UC and used kefir to fix it.
How to make it (see Milk Kefir and Kefir D'acqua):
FAQ about kefir if you've never heard of it:
Some research on keifran (the powerful anti-inflammatory and immuno-stimulant in keifir):
Dom's personal protocol for treating his own UC with kefir (I didn't use his protocol but you might find it useful):
I don't have enough keifir grains for distribution but if you live in the U.S., Australia or Europe they shouldn't be hard to track down. There are also kefir networks online where people share grains with those who really need them, especially the sick. Store bought kefir is garbage so consider this method.
One important note. I've managed to connect with about 8 people with UC who have used kefir long-term to achieve and maintain remission. As was the case with me, they also acheived the ability to eat a wider variety of foods than they had before. HOWEVER, once they stopped the kefir, after about 2 weeks their food sensitivities returned. At a couple months, a few people had flares again. So... it doesn't "cure" UC as I had hoped, you have to take it indefinitely. But I still think this is better than being stuck on remicade and having to go to a treatment center every few weeks, or have to take prednisone. So... do with this information what you will. Once you have kefir grains, the only cost is the cost of some milk every couple of days.
The fact that kefir put me into remission and did for so many others with UC I've connected with, indicates to me that UC is definitely at least partly to do with dysbiosis. However, the gut sensitivity never goes away and it's a lifelong management situation.