I just thought I'd chime in.

I've had Ulcerative Colitis since the early 90's. My first really bad breakout landed me in the hospital for almost two weeks. The first 12 inches of my colon were badly infected. I lost 40 pounds, I had a PICC line inserted; a complete nightmare. It was a shock to learn when I got out that this was something that I'd be dealing with for the rest of my life.

I was in remission for about a year before it got worse again. For the next ten years it went back and forth, good, bad, worse, mostly worse. I was prescribed Asacol for "maintenance"4,6,8 eventually 12 pills a day and Prednisone when things got really bad. I also used the Rowasa, Cortifoam, and Cortenema enemas. After a while none of these drugs worked. The Prednisone generated crazy panic attacks and uncontrollable anxiety. I'm also one of those Accutane people.

Lastly, I had Imuran pushed on me. I remember learning that it originally was used by organ transplant patients and that it impedes the immune system. I wasn't sold. So, I started looking for other options because the only option left was surgery.

Well anyways, here's what I've learned from my own experience. Around 2004 a relative gave me a canister of one of those superfood powder deals. At the time I was really in a downward spiral. I had just gone through a course of Prednisone and it didn't work. I wasn't sure what to do next. I wasn't sleeping. I was rapidly becoming anemic. I had night sweats. Brutal panic attacks. I was really angry and frustrated.

One afternoon I just ending up mixing a bunch of the powder in just water; I remember that it tasted like what you'd figure lawn clippings would taste like. But the weird thing is it actually stopped the flare up. Unreal. I couldn't understand it. I used it for a while until the company that made the powder went out of business. So I had to scramble and figure out where to get a similar powder or just, through trial and error, figure out which of the ingredients in the powder was responsible for the positive effects. What I figured out was that it was Chlorella that was responsible.

So, to make a long story short what I do every afternoon is that I make a huge smoothie with strawberrys, blueberrys, pineapple, banana, mangos, and peaches, some water and pomengranate juice, then I mix in some fruit flavored superfood powder to make it taste a little better. Then I chase that with about 4g of Chlorella tablets and about 6g of Spirulina tabs. I also take omega-3, calcium/magnesium/vitamin d, b-complex, grape seed extract and various mushroom capsules through out the day. What I also discovered as I'm sure others may have figured out, is that a lot of bulk in your diet is really important. If you don't have that whatever it is that keeps you healthy, nutrients, enzymes, whatever, are washed right out of your system, even, I would assume, any medication you might be taking, as you go to the bathroom more and more. Then you start the slide, you bleed, and you get weaker and weaker.

I know that what works for me might not work for the next person. But I just thought I'd bring this up anyway. I haven't taken any prescribed medication since mid 2004. I've only had one breakout since then. I'll admit that I don't like talking about UC in any fashion. I have a tendency to disassociate from the trauma that UC has caused me. I also don't want to jinx my remission.

I'm glad you found something that worked for you. I remember trying chlorella algae (Super Green) over 10 years ago (pre-UC) and it upset my stomach and gave me a rash. But to be fair I don't know what else was in it that may have caused that. But I know I can't take carageenan another form of seaweed and many other otherwise healthy type foods so I'll pass on your suggestion for now.

No meds for you? Good for you, hope I can join you there one day.

Speaking of placebos, I really thought pred was going to work, but I became pred dependent. At the time, I had no idea that it was possible to become pred dependent. I then became desperate so I tried fecal transplantation. Given that it was such a new treatment that had very little data on it and that I had to do myself owing to time and money limitations, I was doubtful that it would work. Yet it did.

But then in hindsight it made sense that it worked. I had abused antibiotics for years. The antibiotics killed the bacteria in my colon. Fecal transplantation put it back.

I switched GIs a few months back. When we were talking about probiotics, my new GI said that we are finding out more and more that bacteria plays a strong role in this disease, we just don't have enough information yet about what bacteria and how.

As for sleep, there is good information about sleep and its role on health:

http://en.wikipedia.org/wiki/Sleep_deprivation
http://en.wikipedia.org/wiki/Sleep

Post Edited (subdued) : 3/10/2011 6:09:20 AM (GMT-7)

kiolm said...
BTW isn't it funny we accept things like placebo, Jinx's and sleep without thinking about them. Knowing what they are or how they work.

Not many don't believe in Jinx's and yet there's no good info out there on them.

No good info on Placebo or sleep either.

Let me clarify about the sleep thing. I'm not suggesting one way or the other what role sleep plays UC-wise. I was just pointing out that I wasn't sleeping because I was constantly getting up in the middle of the night to go to the bathroom.

As for the "jinx" thing... I'm sure that stress and worry play some role and the definition of "jinx" is something that might make you feel that way and that sense, fear that that will trigger an outbreak.

For the placebo effect to take place don't you have to start with a very strong, unwavering belief that something will work? One of the first alternative UC methods that I tried was Colostrum. I had no experience with it when I first took it, had no idea what was going to happen. But slowly it actually started to work. Colostrum knocked down the beginnings of a UC breakout I was having. Up until that point only Prednisone and for a brief time Rowasa enemas had done that. I also felt really happy taking it, like it was a mood enhancer of some sort. The thing is at the point where I had the most confidence in Colostrum was also the point where it failed me and I fell back into needing the same meds.

If Colostrum had worked through the placebo effect shouldn't it's effectiveness have gotten stronger as my confidence in it became stronger? In my case that didn't happen.

No one really knows what causes UC, Crohns's. That's the reality. Years ago my GI joked that if I ever figured it out I should tell him. He'd write it out and we would share the Nobel Prize.

My 2 cents - I'm taking lactoferrin, which is found in the colostrum. The scientists believe that this thing is what makes breast milk so important.

"Lactoferrin is a non-heme iron binding glycoprotein produced during lactation and by epithelial cells at mucosal surfaces. The protein is a prominent component of the first line of mammalian host defense and its expression is upregulated in response to inflammatory stimuli. In this paper, the antibacterial and immune modulatory properties of lactoferrin that contribute to host defense are reviewed. In addition, the results of recent preclinical and clinical studies demonstrating that lactoferrin acts as an inhibitor of dermal inflammatory cytokine production are summarized. The results indicate that lactoferrin may act as a potent anti-inflammatory protein at local sites of inflammation including the respiratory and gastrointestinal tracts."

"Evaluation of the cytoprotective effects of bovine lactoferrin against intestinal toxins using cellular model systems.
Tian H, Maddox IS, Ferguson LR, Shu Q.
Lactoferrin is an iron-binding glycoprotein that exhibits a range of health benefits including immune regulation and disease prevention derived from its structural properties. The present study employed immune cell models and a colon epithelial cell model to investigate the protective effects of bovine lactoferrin (BLf) on both immune cells and colon epithelium cells. BLf caused significant reduction of faecal genotoxin-induced DNA damage in HT29 cells, and down-regulation of lipopolysaccharide (LPS)-induced macrophage cell stress and endotoxic response, in an infection status."

"Nutritional roles of lactoferrin.
Lönnerdal B.
Department of Nutrition, University of California, Davis, California 95616, USA. [email protected]
Abstract
PURPOSE OF REVIEW: Until relatively recently, the only significant source of lactoferrin in the diet was human lactoferrin, provided in breast milk. Today, however, bovine lactoferrin, isolated by dairy technology, as well as recombinant human lactoferrin are commercially available and can be added to foods and clinical products with perceived benefits to the consumer. In this review, the potential biological functions of dietary lactoferrin are described and critically examined.
RECENT FINDINGS: Ingested lactoferrin has been suggested to exert antibacterial and antiviral activities in the intestine, in part through a direct effect on pathogens, but possibly also affecting mucosal immune function. The latter function is most likely mediated by lactoferrin being taken up by cells via a unique receptor-mediated pathway and affecting gene transcription. Lactoferrin has also been shown to enhance iron status of infants and pregnant women, possibly also via the receptor-mediated pathway. In addition, lactoferrin can stimulate intestinal cell proliferation and differentiation, causing expansion of tissue mass and absorptive capacity. On the contrary, lactoferrin has been shown to inhibit carcinogenesis. Recent findings also suggest that oral lactoferrin treatment may have an anti-inflammatory effect on pregnant women, reducing pregnancy complications.
SUMMARY: Lactoferrin treatment may have beneficial preventive and therapeutic effects on infection, inflammation, and cancer as well as enhancing iron status and growth in vulnerable groups."

Colostrum rocks

Great2011 said...
Interesting post. Is there a particular superfood powder you use or recommend? Thx!

The first formula that I used was from an online company called Jenny Lee Naturals. It's out of business now. The formula had Chlorella, Spirulina and I think Quinoa, Flax Seeds and some other ingredients that I can't recall, maybe wheat grass. I've used a number of superfood powders; many of them tasted pretty awful. When something worked; I gave it a shot. When something didn't; I tossed it. I always thought that the ones with a reasonable amount of Chlorella worked. After all anything was better for me than another course of Prednisone.

Currently I use Earth's Promise, pomegranate flavor from Enzymatic Therapy. I think it tastes the best. I'm not sure what benefits it might provide though. I take the Chlorella separately, I think Swanson Vitamins makes it.

I also recently started taking Colostrum again.

I have been told that I should try the Paleo diet, gluten free, sugar free. And that that will cure UC from the start. No need to do anything else. I'm not sure though. Has anyone tried that?

enjoyed reading this thread...OTOss..tanks for sharing..can you tell us more about what you are taking? btw, I laughed out loud when you wrote tastes like lawn clippings

Which Chlorella??
http://www.swansonvitamins.com/Search?keyword=Chlorella+&doSearch=true&ntt=Enzymatic%2BTherapy&n=0&ntk=Level1&x=0&y=0

Is this the Earths Promise?
http://www.enzymatictherapy.com/Products/Energy/Daily-Energy/03534-Earths-Promise-Purple-Berry-Pomegranate.aspx

I'm beginning to think the "don't think about it to jinx" it thing has more substance than we realize. Was listening to Louise Hays Heal Your Body audio book yesterday and she mentions exactly this phenomenon...also the health chapter in 'The Secret"...part of me makes me realize this very forum is toxic to my health, but it's all how you take it in...

take a pill...I'd suggest a rectal med, but it's really no cure for me being your PITA.

It's time you got over me already.

q