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Ulcerative Colitis
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Posted 5/29/2009 6:20 PM (GMT 0)
I'm 23 and was diagnosed last August with colitis, and have been on 3 pills of prednisone ever since. Once I go off of 3 prednisone I get a flare up. I've tried asacol and liada, and they caused major diarreah and made my stomach bleed which was the worst pain in the world. I also tried MP6 and it gave me 105 fever and caused vomiting. Is it an option to not be on any medication at all? Does anyone go about this all natural? Like natural healing-eating healthy organic foods, exercising, yoga, stress control. Can't that be an option? My doctor said no, I can't believe that though. What are your thoughts?
Posted 5/29/2009 6:27 PM (GMT 0)
Most allopathic doctors are not trained in alternative therapies, so they're naturally going to advise only about what they know - drugs and surgery. If you're interested in alternative therapies, there's a wealth of information out there. I'd recommend you start with the book Listen to Your Gut which is a comprehensive overview of all types of natural routes - dietary changes, healing supplements, probiotics, body work, accupuncture, etc.

I'd also advise you to look for a naturopathic, alternative or complementary medicine doctor in your area. If you're on the east or west coast or near a major metropolitan area, you have a better chance of finding one of these progressive physicians.

For what it's worth, I've learned to manage my UC and have been mostly in remission for years with only limited medication. I take azulfadine at a low maintenance dose. The combination of things listed in my signature are what worked for me.
Posted 5/29/2009 6:49 PM (GMT 0)
I have been in remission for three years from a high magnesium/beta carotene diet, Spinach/sunflower seeds, Carrots, walnuts, avocados, peanuts, almonds, peanut butter, romain salads, etc and all while on zero medication and zero suppliments.

No medications or anything I tried( and I tried everything) helped much but this diet completely healed me.

Post Edited (Cfromutah) : 5/29/2009 12:57:38 PM (GMT-6)

Posted 5/29/2009 7:13 PM (GMT 0)
I have crohn's colitis (which is crohn's affecting my colon), I'm either allergic or non-responsive to tradtional oral RX so I had no choice but to put my skeptisism aside and try the "natural" route of which I'm glad cuz I have found a combination of products that have definitely helped (not full remisssion but much better than nothing at all) and best of all, no side effects. I also altered my diet (no more junky, processed foods, caffeine animal fats, refined sugar/artificial sweetners and I exercise regularly as well (also major help physically and emotionally in dealing with this disease). The alternatives (natruals) that I use are probiotics (primadophilus reuteri made by natures way) which are essential even if you take oral RX, fibre supplements daily and indefinitely as directed by my GI 5 yrs ago now, bee propolis (natrual anti-inflammatory which you should google for more info), omegas 3-6-9, vitamins A and C-Calcium Ascorbate (easy on the gut) both vitamins A and C are an excellent source for repairing damaged cells and such.

It's best to take a combination of things cuz it's not likely just one thing alone will be enough help and what works for some doesn't work for all so you have to try different things (giving them a chance to work as well as some things can take months before you notice improvements).

Bottom line from my experiance, I used to "go" 30+ times a day with lower back pain, blood, excess mucus and all, I now go on average 5 or less times a day, no blood, no lower back pain hardly any mucus (only on rare occassion) with formed stools...I still have frequency obviously cuz 5/day isn't normal for me (one/day was before getting sick) and urgency is also still an issue but I'll take whatever improvements I can get.

:)

Posted 5/29/2009 8:00 PM (GMT 0)
To me vitamin E enema is the mother of all natural treatments for UC
Posted 5/29/2009 8:04 PM (GMT 0)

mudua said...
To me vitamin E enema is the mother of all natural treatments for UC

Definately one of my favs
Posted 5/29/2009 8:53 PM (GMT 0)

I know  I am new at this and had my last flare 3 months ago. I have tried to go on raw food diets which helped me get in my remission. I have had no mucus or blood for 3 months. I take probiotics, bee pollen, Im gluten free and dairy free. I am trying to stay away from carbs but I do find that hard, my weight decrease rapidly when I do. I want to decrease my carbs,  as this helps. Im on ½ of pentasa now and 1 asacol every other day. I would be on more if I was not doing this diet. I also take vitamin supplements, and drink spirulina. I also combination eat so that I do not get any IBS symptoms (this really works). If I feel like I may have to go to the loo to often at work I just chew raw baby leaf spinach. It helps as it is alkaline. I am now trying homeopathic remedies. The homeopath says I will not have to stay on durgs all my life. She has a brother in law who has UC, he controls it with these remedies.

 

 

I love homeopaths, I went to one when I was 23. He said to me that to cure my asthma I would need to give up dairy and gluten products. He said I was allergic to these products. I didn’t believe him and carried on eating these products. I now look back and think, my god if I only listened then would I have UC now.

Posted 5/30/2009 3:03 AM (GMT 0)
I agree with princessa- one should seek an alternative practitioner- ideally a full MD- to complement the pure drugs/surgery approach of your GI. That said, many, many people (myself included by the looks of things though not quite there yet) have tried anything and everything natural under the sun and still end up on pred or getting sliced and diced, so ultimately luck of the genetic draw and of the degre of disease activity at the time probably has more to do with whether one can avoid meds or not, compared with one's fanatacism at trying alternative remedies. I was med free for some ten years eating whatever I wanted and without any knowledge or practice of alternative remedies (this was before any maintenance alternatives to 5ASAs even existed) and am med-dependent now even as I have done everything natural there is- still, even if med dependent, natural therapies can at least help one minimize flaring and prednisone usage.

Also, twenty years from now or so, non-toxic things like helmthinic therapy and probiotic infusions (or more likely, drugs derived from these parasitic worms or infusions of bacteria isolated from healthy human stool) will be standard, but for those who don't have the time or patience to wait twenty years for FDA and AMA approval, an alternative MD will be your only resource.
Posted 5/30/2009 3:08 AM (GMT 0)
alternative and MD doesn't even belong together, lol.
Posted 5/30/2009 5:17 AM (GMT 0)
I took no drugs for a year and saw an acupuncturist every week. The acupuncture put me into remission and with weekly visits I was good for almost a year. After I skipped a few visits, I got worse and I never was able to have the same amazing results again from acupuncture.

I've also had good results with hypnotherapy. (look up the medical center at UNC Chapell Hill where excellent research on IBS and hypnotherapy is being done)

I think drug-free is maybe possible for some but for me, it was not possible for the longterm. It took years for me and my doctor to find the right combo of drugs that work for me. Don't give up.

Have you tried azulfazine or are you allergic like some of us? Have you tried rectal meds? Cortifoam has steroids (like the prednisone) but it's not as bad for you and you can use it to help get off the prednisone.

If you can try the all natural route, why not just go for it? Tell your doctor you want to conduct your own experiment and give yourself a month or two to try it. Just be careful to know when you're getting worse and need help. And be careful about dehydration.
Posted 5/30/2009 7:23 AM (GMT 0)
I'm med free, except for Lexapro, which is for anxiety and depression.
Posted 5/30/2009 11:22 AM (GMT 0)
Im new here, I havent been given the diagnoses yet. By I have the symptoms with some bleeding and much cramping. Freaky bad at times.

The IBS showed up a few years ago out of no where only at my parents place. Bad, bad cramps. Very rare. Over two years ago I started having a rhumitoid type problem, the IBS beace regular. I have bloating, pain, bad cramos, some blood, and some other stuff.

I just had a very, very scary recent two weeks, I could barely eat. I thought its was getting ugly and it wasnt going to ever stop. Reality check. I though I might soon die. I was sick. I cut out all dairly and wheat for a first. I have a minor S cerevisia IGA positve. But no celiac in the upper gi, I had an upper scope. No colinoscope yet.

Anyways, I rid of the dairy and gluten, then I started on these VSL3# for a week. Amazing turn around. I still have some touble, but It saved me. This is all Im on. Without it Im in trouble. Whatever is going on with me is getting worse. Im in debate over if I should take the methatextrate I was offered, of look into steroids.

I tell you what, I was scaed of that. Until I came here. Ive read one person after another talking about getting some surgery that doesnt sound good. And I looked up J pouch. Wo, I think I would rather take some meds now to avoid any permanent alterations to my inside. I think Im more scared of such sergery. I couldnt do it.
Posted 5/30/2009 11:24 AM (GMT 0)
German medical schools produce naturopath MDs.  I saw one, and he was about the most helpful doc I've seen.  I mentioned him to my current GP and, by the look on his face, I could tell his brain was, like, "Does not compute."

I've found certain DOs operate on the same wavelength.  I like one of the speacialists I see for this reason.

Posted 5/30/2009 3:20 PM (GMT 0)
I take a very low, maybe useless amount of Sulfasalazine right now. It seems I am doing ok, it is difficult to tell with this disease. I am defintely doing better right now then I was when taking Colazal at full dosage which had me bleeding every day. Yes that's right, the drug made my symptoms worse.

Watch your diet carefully, probably most important thing you can do, follow close to the specific carbohydrate diet, but I know spelt flour and I think rice and some oats are ok. It is different for everyone. I have to avoid catsup even. I avoid sugar and wheat mostly. Honey is fine.

Try Juicing Carrots and cabbage, eat sauerkraut. I usually eat one severing of canned spinach a day as well.
Try anti inflammation herbals like Boswellia at high dosage, tumeric maybe, vitamin E, fish oil, Quercetin & Bromelain, a good quality probiotic, some work better for some people than others. Psyllium husks is great for your fiber and helping if you are not flaring to badly.

I think the natural way is slower to recovery and far more difficult to implement because of all the experimenting, but drugs don't always work very well or can actually make some people worse.
Posted 5/30/2009 7:54 PM (GMT 0)

seconder said...
German medical schools produce naturopath MDs. I saw one, and he was about the most helpful doc I've seen. I mentioned him to my current GP and, by the look on his face, I could tell his brain was, like, "Does not compute."


I've found certain DOs operate on the same wavelength. I like one of the speacialists I see for this reason.

I guess it could make a little more sense if you are speaking about a different county. Those terms do not go together here in the US, lol. If I wanted to see a naturopath here, I would not look for a MD. I know many MD's, several Naturopaths and also many DO's. Difference in philosophy is like oil and water.
Posted 5/30/2009 8:30 PM (GMT 0)
Naturopath MDs are definitely mythical beasts in the US.  In Germany, medical students can choose to be allopaths or naturopaths from what I understand.
Posted 5/31/2009 1:46 AM (GMT 0)
Following an antifungal regimen (diet and natural antifungals) was the only thing that helped me get well. No symptoms or meds taken now. I take MG Beta Glucan to boost my immunity and probiotics. I feel those 2 supplements are key to my good health. You need to take your health into your own hands. Diagnosing symptoms and giving prescriptions are what most doctors know how to do best. Do your own research. Experiment with some of the suggestions offered here. Everyone is different, so one method may not work best for all, but I firmly believe that diet plays a huge role with ones' UC symptoms.

I listened to my doctors for 8 years, telling me that changing my diet would have no effect on my UC symptoms. I always wonder where I'd be today if I never decided to research and experiment on my own, against my doctors advice.
Posted 6/1/2009 10:41 AM (GMT 0)
I also recommend "Listen to Your Gut" by Jini Patel Thompson as a first step. There is so much advice and potential remedies out there it can be difficult to make sense of it all. LTYG provides a fairly simple and straightforward (not necessarily easy) approach built upon experience. I attribute much of my success in containing my UC to her methods.

While I am still on sulfasalizine, I plan to gradually wean myself off of that. I have also dropped the Rowasa in favor of her retention enema (when needed).

I think one of the biggest challenges of going natural is that, for most of us, it means you are taking control of your own health/treatment. This can be somewhat intimidating if you are used to following doctors orders and letting them make the decisions. It is a big step but certainly not impossible.

Best of luck to you.
Posted 6/1/2009 11:46 AM (GMT 0)
I have been taking Tanalbit(you can google it) and L-glutamine. It seems to do the work in keeping me in check. I also take primadophilus reuteri made by natures way, although not religious about it. I do try to stay away from sugary food but otherwise eat whatever I want. I am a vegetarian though..so non-meat products.

For those taking Sulfasalizine, I am curious to know which brand?
Posted 6/1/2009 12:51 PM (GMT 0)
I started taking a supplement really high in omega-3s and full of other nutrients and it has helped me a great deal.  I was really skeptical about it, but when I started it, I started a diary with it.  I was taking 9 Colazal and now am taking 6.  Enemas every night, now I can go every other night.  It seems to help me.  If you want to read my diary, you are more than welcome and I can give you the website for the supplement as well. 

Posted 6/1/2009 1:24 PM (GMT 0)
I'm not taking any meds only because my insurance wanted a 950 dollar deductible after being diagnosed last year. I was never sick until then, so I had the lowest plan, which I can't upgrade now until the end if this year, and I'm gonna be quitting my current job by that time, so I figure there's no reason to mess with it. That's led me to finding out alternatives to treating uc, and probiotics really seem to work, but only in high amounts, so I have been using vsl #3 in capsule form, as well as boswellia in capsule form. Its an anti inflammatory, it works for me. I tried bee propolis and it didn't. I've been in remission after I added boswellia just a week ago or so, so like everyone else says, try different things and don't give up just because one thing doesn't work.
Posted 6/1/2009 1:31 PM (GMT 0)
I'm not on any prescriptions. I really felt that asacol and imuran didn't do anything at all for me. Prednisone helps immediately but gave me osteoperosis sooooo It's RX free for me.

Here's what I think helps me the most: Diet, digestive enzymes, probiotics, OmegaXL.

I am not in remission but am slowly going to get there if I can just cut out the junk food and some other things I shouldn't be consuming.

I was fortunate to try the OmegaXL/UC study and got some free samples which helped some very heavy bleeding slow down. Now I have very little blood and formed stools most of the time. If anyone is interested I still have the contact information. I posted a thread about it awhile back and surprisingly nobody responded.

Posted 6/1/2009 2:19 PM (GMT 0)

kim123 said...

I listened to my doctors for 8 years, telling me that changing my diet would have no effect on my UC symptoms. I always wonder where I'd be today if I never decided to research and experiment on my own, against my doctors advice.

I wonder the same. Thank God for the Internet and the many helpful digestive health books I've found over the years.
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