Hi everyone,
I am new to this forum and wanted to share what I have learned since I was diagnosed with UC. It's kind of long, since I have done a lot, but I really just want to get the information out there for anyone who might benefit. I have been down the whole MD path with meds that seemed to be an emergency intervention and lots of contrasting information about diet and whether this was even an autoimmune disorder, and what things could help. I am posting a modified email that I wrote to a friend a couple days ago because I think it might help others who are diagnosed with UC. I feel I am actually recovering for the first time. I am improving pretty much every day, and although it has cost me a lot (like everything I earned when I was able to work! plus others' help financially) to go through the route of buying probiotics and supplements rather than just taking what the doctor prescribed, I feel that since I'm actually getting better, it's totally worth it. Here is my story/info for you all. Please let me know if this is helpful or you find other results. Thanks!
Kat
The first thing I started with after being put on meds, hospitalized and given a blood transfusion was the Specific Carbohydrate Diet. Apparently, when people get upset gastro stuff, sticking away from ALL grains, starches, and anything with more than a monosaccharide is essensial. I am still doing this. It makes things easier to digest and will take away bloating/gas/distension, or at least that is the idea. Some people have issues with fructose, so staying away from fruits can also help. I have had to do this mostly. The book "Breaking the Vicious Cycle" talks about the research behind this, and there is a website, and forums, which have recipes etc. Remember that some veggies have starches and some cannot be broken down at all. Corn is one of them. Potatoes. Check the lists on the breaking the vicious cycle website http://www.breakingtheviciouscycle.info/ or the book.
Another key to this is NO artificial anything. No store bought foods. Cooking everything yourself. No fermented foods. Nothing that comes in a can. Nothing with gluten (this is KEY). No dies. No preservatives. No "anticaking agents" included those NOT listed in ingredients in store-bought onion powders, etc. No sugar added. (Table sugar is not a monosaccharide.) Also, no "natural flavoring" - could contain starches or gluten and often made from corn syrup etc. No "vanila flavor" or anything like that either. No "spices" listed as ingredient. You have no idea what food formula goes into that.
Also, check ALL medications for gluten-containing fillers, and fillers in general. Maybe have all meds made at a compounding pharmacy. Yes, you can have meds compounded for you at these places and have no fillers, or chose a filler maybe. Have to pay for it on your own then...insurance won't pay most likely. This step can save lives sometimes. I have read testimonials of people who just took gluten out, it made a difference, but still flaired up, then found out their meds had "dextrose" or something in it, which was made from corn and wheat, and that was what was causing the flair ups.
No spices. These can cause irritation. Especially spices that are "hot" in energetic medicine, such as chinese medicine. Think garlic, cayenne, even basil. Things that are warming in chinese medicine can also cause you to go to the bathroom more often. I've had to stay away from all that until recently when I started the colostrum and have had major improvements. I was able to use a spicy herbal throat spray and swallow it for the flu and I did not seem to have consequences except a very hot belly the first time.
No dairy. Dairy is hard to digest, and interferes with the absorbtion of calcium, iron, and many other nutrients. Our bodies do not do a good job of digesting it and stop producing lactose altogether by adolescence.
No red meat. It is inflamatory. Less meat = better. I only eat fish, namely, white soft fish, like bassa or tilapia. Easier to digest. The hormones in meat can also cause problems. Same with the antibiotics in meat. Antibiotics can cause UC.
No seaweed. Used in lab mice to induce UC.
You can try no meat too - try a protein powder that is only made from pea protein, and non-GMO, since it is a complete protein and has no starch in it. Now Sports and Source Naturals both make one. Just mix with water and drink. It doesn't taste good but it does the job. An adult needs 20 grams of protein every 5 hours so that our bodies don't start eating their own tissue for fuel, and I find that eating smaller meals more frequently can really help.
No iron in the form they may want to give it to you if you have bleeding. They kind they will prescribe is horribly irritating to the colon and very very difficult to digest. I was in so much pain from it when I was on it that I nearly passed out - the worst pain I have ever been in, and that is AFTER painful bleeding/diarrhia for months. The malabsorbtion is why they prescribe so much of it, so that out of it all, your body can absorb a tiny amount. The kind I use, which has not caused problems!! is called Floradix Floravital Iron + Herbs. Make sure to get the one without gluten or yeast. I would suggest ordering a lot of this stuff online if you can't find it locally. You can save money that way too.
Avoid yeasts. They can cause issues too. Yes, this means no bread. In the beginning, when you are still on meds, some things will appear to not cause problems but when you are off them meds they do ... or once you eliminate them for a while they do .... to me this means to stay off of them till you are off meds and completely healed. Some people may not get to enjoy bread again in its normal forms, but hey, that's way better than the symptoms of UC right?
Avoid all antibiotics. That is what caused my condition. Directly. It is correlated in 1/3 of cases, I was told by a naturopath. If you get an ear infection, you can get coloidal silver with garlic (not sure what brand) and it will take care of it fast, and a sinus infection can be gotten rid of within two days or so with just coloidal silver used in a neti pot or nose irrigator (same as baby ear syringe - those squishy bulb things). There are definitely alternatives to antibiotics for your typical antibiotic uses.
MDs will not admit that diet or antibiotics have anything to do with Chron's or ulcerative colitis. If anything they will tell you to eat a "bland" diet with milk, soft crackers (processed white sugar and wheat containing gluten), mashed potatoes (mostly starch) etc. MDs are not trained in nutrition. They are trained to diagnose diseases, they follow what they are told about them, and use the drugs advertised to them by drug companies to "treat" them. They are often given huge incentives by these drug companies for prescribing their drugs.
They will call the disease autoimmune and chronic, or permanent. It is not. I was on immunosuppressents and steriods for over a year after I was diagnosed and my situation got worse because I had no support from anyone, and I could not stand in a kitchen long enough to cook my health food anymore, so I ate what my boyfriend would bring over, i.e. junk food. That is when things got bad. I also started using the wrong kind of aloe vera gel (whole leaf) and went from going three times/day to 12-15. Anyway, that's when things got really bad. I have recently stopped my meds (after careful timing mind you and a looooon tapering period for prednisone. Once down to 25/20 mg, only went down 2.5 mg per month pretty much. Periods are worst time to try to go down since body is already hormonally stressed out) Some terrible side effects (like bone growths, memory loss and other mental health issues, depression, mood swings, panic attacks, personality changes, fears and phobias, and other effects) went away completely very quickly. The meds the doctors will prescribe will not ultimately help, but might seem to be lifesavers in the beginning. The body's immune system sometimes gets so wiped out that you have to artificially keep the body going, which is what those meds can do, for a time. Also a note about tapering from prednisone: I will have taken about a year to taper off my last round because the two times I tried to taper sooner, I was back in the hospital getting blood transfusions.
This is what I AM doing that is helping:
I am now using bovine colostrum, which contains the mother cow's immune system which it gives to it's baby. This has helped me go from running to the bathroom every time I got up or moved in bed and losing much blood every day in stool and not being able to digest my food to going only a few times a day (sometimes as low as 2!) and most of the blood is gone. I feel safe also. Sometimes when the immune system is wiped out people do not have a sense and a knowledge that they are safe, that they are in a body (I had a continuous out of body experience that recurred throughout the last 2 years), and that they are meant to be here. I think it is because you feel like you are dying, so you respond by spiritually getting yourself ready for it. At least that was my reaction....now I know my body is mine!
Anyway, in addition to the colostrum, I am using bio-K (which is expensive but the only probiotic I know of that contains active in-culture L. casei strain of bacteria. This strain is essential to many people's recovery. Also acidophilus. Also Sacchromyces boulardii, which is a strain of yeast that is helpful in re-establishing good bioflora (the good bacteria) in the gut. When these strains are toleable, I was able to then add a multi-strain probiotic (Michael's brand"Probiotic Factors" which does NOT have bifidus strains in it). In all of these probiotics, I make sure there is NO maltodextrine or other ingredients that are indigestible sugars - they lead to feeding the bad bacteria which can overpopulate when the good guys are wiped out. If you ever feels ready, you can try a bifidus strain as the last thing. If you wants to try it first, you can. It can really help in Chron's actually - in ulcerative colitis, which is what I was diagnosed with, it does the opposite 25% of the time, which is what happened with me.
The colostrum and the probiotics will help rebuild the bioflora populations which may have been depleted somehow.
Here are some ways the human immune system can be negatively impacted (i.e. avoid, especially if you notice a difference in mood, breathing etc. with any of them):
antibiotics
fluorescent lighting
electrical circuits (the specific frequency of Hz used happens to be the one that interferes with the human immune system)
fluoride in the water (this is actual a kind of fluoride that is an industrial waste product - it causes many illnesses, and impairs brain function, makes people docile (used in **** Germany on those imprisoned to make them fight back less), and lowers IQ)
other constituents in tap water: amonia and chlorine.
msg
other manufactured "food" compounds and additives
genetically modified organisms - i.e. food that is not labeled "organic" - not recognized by the body as food and cause allergic (immune) response to it to "fight" it. also have synthetic proteins that the body cannot use and recognize as toxins to fight. also liver now has to deal with all of this crap to get it out of the body. also are not engineered to contain their own pesticides (i.e. corn).
emotional toxins i.e. abusive relationships. even parents who "love" their kids but want to keep them sick. i had to deal with this myself.
poisons used in furniture, pillow cases, sheets, carpets as adhesives, flame-retardant substances, etc. asbestos.
white sugar. too much salt, especially non-sea-salt.
preservatives
aluminum (throw away all cooking materials that contain aluminum - it is extemely toxic)
air that contains lots of fumes from gasoline, industrial pollutants, or that has recently been dumped with aluminum and other chemicals by the government (i.e. chemtrails)
I know I am forgetting a lot, but this will help. The more of these things that can be eliminated from your environment (i.e. food you eat, air you breath, water you drink, things you sleep on and live around, and any emotional situations that might be causing issues - I know that last one is hard), the better off it seems people are.
I am also using aloe very gel (the inner filet only!! very important - whole leaf will cut you up inside). Two to three times daily, 6 oz. This is soothing to the gut, and very very healing to tissue. It will help coat it and allow it to heal up. My boyfriend had an ulcer in his stomach that he took 9 months to heal by drinking a bunch of aloe every day - the same amount as me - for that whole time and of course cutting out foods that hurt it.
I also used triphala for a time too becaues it is soothing to digestion and will loosen things up if you go through constipated periods. The alternative I know for that is dirnking warm water (2 glasses) in the morning, or with epsom salt in it - that will definitely make you go...maybe on the diarrhetic side, within a few hours.
Also lots of B vitamins, including B-12. You can get B-12 from Nutrasuma brand, as a spray. Most naturopaths don't know about this - my boyfriend knew about it. The naturopaths I knew recommended either no B-12, or a shot in the butt of it. I didn't feel any effect from it with the shot. I get immediate energy from the spray. Also folic acid - high doses. Most people with Chron's UC, etc. have low folic acid counts.
Vitamin A - high doses of beta carotene. Do NOT use any old vitamin A, since the retinol form can become toxic at high doses. Many people with leaky gut syndrome (which to me is logically associated with IBD and IBS (inflamatory bowel disease and irritable bowel syndrome) have low vitamin A counts.
Mutlivitamin. I have been taking a prenatal vitamin since my hair started falling out due to car accidents, eating grains, a general inflamatory state in my body, and low vitamin D and malabsorbtion of food (leading to chronic malnutrition) several years ago. Get one that is sourced from food rather than synthetic. It will say "sourced from" or just "from" on the bottle. My boyfriend could recommend some really good vitamin brands.
Make sure there is vitamin C in the multivimatin or supplement. See what works. I had one doctor tell me too much was bad because it is acidic and you dont' want to eat anything acidic, and I also have read how important it is to heal tissue.
Potassium is always good too. Keep her hydrated, including potassium and other mineral intake. Magnesium is important but too much can cause diarrhia.
To rebuild the colon tissue, eventually, butyrate complex, made by pharmax, is "the food that the colon uses to make more of itself - i.e. more colon tissue". Also L-glutamine, an amino acid, is helpful. I am taking 5 grams 3 times per day. Or at least I was till I took a break from it. I am currently seeing how I do with minimal powders, etc.
There are herbs that might help. I know of a lot that help regulate the immune system, that are anti-inflamatory, such as ginger. I did some research and found a Chinese formula that is used in China, recommended it to a Chinese herbalist here in Tucson, she did some research, modified it slightly after examining me (ginger was too "hot" of an herb for example, for me), and made it up for me. It helped when I was still on my meds, but also made me more anxious, and I am not using it now. Here is a link to the page I found describing it initially: http://www.itmonline.org/arts/jianpiling.htm
As a final note, I am finally REALLY healng. I thought I was healing many times before when my symptoms would get better for a little bit on the drugs. Then they would come back. Sometimes I could barely eat anything at all. I have been mostly gluten free for over a year. I am now trying to be totally gluten free which is hard because of medications, but I feel that it helps to do that completely. That also means not sharing cutting boards, and for me, not being around people eating, say, chex mix, where there are particulates of grain floating in the air. I also eat no grains, no dairy, and like I said, only soft white fish. I cook everything myself that I eat. I cook my food down so it is very soft. I do not eat anything raw right now except when I juice vegetalbes. When I get my own juicer I will be able to have raw juice more often. When I stopped the immunosuppressant drug (azathioprine), I started going to the bathroom way more and my symptoms seemed worse. When I started the colostrum, they got better. (I was already doing the probiotics). Now they are much better. I am not bleeding very much at all. I was told it can take 18 months doing everything perfectly to turn around a gut problem. For celiac disease, which often overlaps with Chrons and UC, that can mean NO gluten in ANYTHING for a year and a half to see relief from symtpoms. I will be probably be eating soft easy to digest foods and cooking everything myself for many many more months if not years. I will probably never eat anything with gluten in it ever again. I have not been out to a restaurant to eat (without consequences) since I got diagnosed. I was sick before that. Often these problems can show up as skin problems, asthma, bloating etc. first before they are seen to be digestion issues. Even autism is linked to gut issues. L-casei and the GAPS diet have helped many many people with autism, bipolar disorder, and other disorders to overcome them.
Diet impacts us way more than we think, as do the toxins in our environment. I have lived through this and I have found that I am reaching out to everyone I ever hear of that has similar issues, because 1) there is an active disinformation campaign that benefits drug companies when people stay sick, and it makes me feel like others will have difficulty finding the information I have through my two years of searching, and 2) I guess it just has been so hard that I feel like I want to help others.
I am sure I have left some things out. I would be happy to provide more info if people have questions. Between my boyfriend and I, who have both done a ton of research on this, we have accumulated a LOT of information. He has also been helping people heal naturally from cancer (even advanced stages) for a long time, and been in the health industry for 30 years. If anyone knows anyone with cancer we have found that his dietary/lifestyle approach works, as does a supplement used by a doctor who has cured many people of even brain cancer that we could point you in the direction of. That's another one (cancer) where there is a very active disinformation campaign to keep people sick, so getting the info out there is, well, important to both of us I feel.
Thanks everyone.
Kat