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Anybody have/had success with managing UC using alternative treatments?

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Posted 12/31/2009 8:41 AM (GMT 0)

Burli said...
LondonRed
please tell me more about #5 (what is it)
vitamin D3 (did you start taking it without knowing you needed it, should someone tell their GI to test for this or was there a clue that told them you needed it?)
I think the vsl is helping me too
I reduce simple sugars for fear of diabetes but not carboydrates; is that the same with you or do you not even eat grains, breads, etc.
chocolate; is it the caffeine that causes you problems or the fat that's usually in chocolates and cakes that do you in (what does it do to you?)

Hi Burli - I got referred to the Royal London Hopsital at my own request and see a consultant there. It is an NHS Hospital to comes udner the Medical Council here in the UK. He prescribed me this stuff along with L-Glutamin. He only gave 2 months supply and said to cut our anxiety as much as possible. I had the best two months medically ever! I came off it in December and have been a lot worse. That's what it says on the label... Arsenicum Album. I take two minitiare chewables every 2 days.

The Vitamin D is the miracle drug and is known to reduce Cancer risks too. I started it without even knowing I needed it and i usually get D with anything new. You need to ask a GI or a GP to test for Vitamin D and B12 deficiencies for IBD in my view.

I eat a lot of rice. breads etc.... I do eat chocolate and am good with it although it can give me an additional bowel movement. I think for me Fat, Chillies and Sugars in addition to anxiety is what got me here and keeps me here!

Posted 12/31/2009 8:46 AM (GMT 0)

blksteeda said...
Has anyone else tried Boswellia Serrata? After reading a few articles on the supplement in relation to UC and the remission success that has been documented, I decided to try it when my doctor put me back on 30mg of Prednisone. I was instructed to reduce my Prednisone by 5mg every 10 days and in the past when I have reduced it, my symptoms got worse. I've been taking 1200mg of Boswellia (which this supplement also contains Devils Claw) and I'm now down to 5mg on my Prednisone and my colitis is under control. I'm hoping its due to this supplement. This is just one article I found on the supplement:

"Pharmacological studies have found that extracts from the gum resin of Boswellia serrata (Indian olibanum, a relative of frankincense) possess anti-inflammatory properties. In particular, the boswellic acids inhibit the enzyme 5-lipoxygenase which is responsible for the production of leukotrienes. Since the inflammatory process in inflammatory bowel disease (IBD) is associated with increased function of leukotrienes, the benefits of Boswellia in the treatment of both chronic colitis (ulcerative colitis) and Crohn's disease have been recently investigated.

Twenty patients with chronic colitis received Boswellia gum resin (900 mg per day for 6 weeks) and another 10 patients were given sulfasalazine (3 g per day for 6 weeks).1 Out of 20 patients treated with Boswellia, 14 went into remission (70% compared to 40% for sulfasalazine).

The safety and efficacy of a Boswellia extract was compared against mesalazine for the treatment of 102 patients with active Crohn's disease in an eight-week randomized, double-blind study.2 The primary clinical outcome measured was the change in Crohn's Disease Activity Index (CDAI). After therapy with Boswellia extract (3.6 g per day) the average CDAI was reduced by 90, compared to a reduction of 53 for the mesalazine group (4.5 g per day). The authors concluded that the Boswellia extract was as effective as mesalazine, which is the state-of-the-art treatment for this disorder. Considering the observed fewer side effects and better safety profile of Boswellia, they suggested that this novel herbal treatment appears to be superior to mesalazine in terms of a risk-benefit evaluation.

The chronic colitis study described above follows from a similar, earlier study of the efficacy of Boswellia for this disorder. Unfortunately, the design flaws in the earlier study (fewer patients in the control treatment group, study was open) are reflected in the current trial. In contrast, the study on Crohn's disease was well designed and conducted in Europe. It adds serious weight to the suggestion that Boswellia is a useful anti-inflammatory agent for IBD."

Interesting formula here.... Turmeric and Boswella

http://www.feelunique.com/p/Pukka-Organic-Ayurvedic-Formulas-Turmeric-Boswellia-Formula-90-Capsules.html?utm_source=froogle&utm_medium=gen

Posted 12/31/2009 9:08 AM (GMT 0)

just diagnosed said...
FWIW while different things work for different people, i reckon Burli is *right* to warn people about 'treatments' that have zero objective evidence of working.

Being warned is a good way to avoid wasting money and time on what is not going to help. Many times people might think something is working but they were just going through a good patch and it had nothing to do with that something at all.

if those things did work we'd all be on them and we'd all be cured. we have to be able to cull the more helpful stuff from the less helpful, so good on you Burli!

confused I spent less than $5 to do three treatments of fecal transplantations. Each transplantation took about five minutes to do. I was definitely not going through a good patch when I did fecal transplantation. I was prednisone dependent. The fecal transplantations put me into remission immediately, and my poo went back to the condition it was when I was in my early 20s. Moreover, I no longer have IBS symptoms. It is everyone's choice to wait years for more studies to be conducted to determine how well fecal transplantation works for UC and how to profit from the idea by packaging it in pill form. I did not want to wait that long. I wanted my life back.

Currently, none of the medications on the market "cure" colitis. They are expensive and have many side effects that are harmful to the body. For these reasons, many of us seek alternative treatments. It is good to be able to come to a forum and see what others are doing that has helped them. Yes, if something made someone's condition worse, than it is good to read about it too. We can learn from other people's experiences, to find out what they tried and why they felt this and that worked and this and that didn't. I learned about the spinach and sunflower seed diet on this forum. The diet really helps keep my poo in top condition. I wish I knew what I know today 15 years ago.

As for anti-inflammatory meditations, my body quickly becomes accustomed to them. They simply stop working. In fact, Asacol could have even made my flare much worse. I started taking it when I started seeing a bit of blood before my third and last flare. Within a week, I was in a full-fledged flare. I have gotten far better results from alternative treatments than colitis medications.
Posted 12/31/2009 9:45 AM (GMT 0)
I'd do the fecal transplantation if it were available commercially. I'd use my wife's faeces and implant into myself. I don't think I could do that on my own and she would hate to do it!
Posted 1/1/2010 4:14 AM (GMT 0)
that is terrific about the fecal transplantation, reckon the bacterial balance in the colon must have something to do with it or that and the probiotics wouldn't be so helpful.

i reckon that sounds like something I would like to try when i get another flare-up in the future.

Still I think Burli is right to share skepticism. We need that too. That is what will protect all of us against stuff that does not work or is very likely not to work, and there will be plenty of naturopathy "treatments" out there that are bogus too or even harmful.

That said, obviously there are plenty that can help as well. But we need the skeptics, especially those that have been through the mill for 20-odd years. They are very important.
Posted 1/1/2010 3:08 PM (GMT 0)
about 8 months ago, I looked at my bottle of Colazal and realized it was almost empty. I had no refills left and had to call my doctor for a new prescription and it had to be mailed to my mail order drug company. The new prescription didn't arrive until I ran out of pills. By the time they did arrive, I was feeling good...really good! I decided on that day to put the full bottle of pills in the medicine cabinet and leave it there. I have been off of all medicine since then. I eat a probiotic yogurt every morning and take 2 metamucil capsules a day. I have a bowel movement every morning that is formed. My control is not great - when I have to go, I have to go. I do have some gas every day - usually in the evenings. But I feel the best I have felt since a few months before my diagnosis. I was able to go Christmas shopping this year stress free without looking for a bathroom in every store I walked into. I know that everyone is different, but I firmly believe the medicine made my symptoms worse. I will stay off of meds for now.
Good luck and healing to everyone in this New Year!
Posted 1/1/2010 3:32 PM (GMT 0)

Discouraged said...
about 8 months ago, I looked at my bottle of Colazal and realized it was almost empty. I had no refills left and had to call my doctor for a new prescription and it had to be mailed to my mail order drug company. The new prescription didn't arrive until I ran out of pills. By the time they did arrive, I was feeling good...really good! I decided on that day to put the full bottle of pills in the medicine cabinet and leave it there. I have been off of all medicine since then. I eat a probiotic yogurt every morning and take 2 metamucil capsules a day. I have a bowel movement every morning that is formed. My control is not great - when I have to go, I have to go. I do have some gas every day - usually in the evenings. But I feel the best I have felt since a few months before my diagnosis. I was able to go Christmas shopping this year stress free without looking for a bathroom in every store I walked into. I know that everyone is different, but I firmly believe the medicine made my symptoms worse. I will stay off of meds for now.
Good luck and healing to everyone in this New Year!

Your not alone Colazal without a doubt made my symptoms worse. I wonder how many people are given these drugs, made worse, given steroids to try and help the bad effects some of the drugs are causing.
I thought I would toss in I think vitamin D at about 4000 a day or more is a good idea, it takes months to build it back up in your system but I think vit D is very important.
Posted 1/1/2010 4:12 PM (GMT 0)

It's no secret that Colozal or other meds prescribed by our Gi's have side effects for some and not others. They can make symptoms worse; that's why our doctors ask how we're doing. But, to think that herbal treatments do not do the same is wrong and to use a bad reaction to Colozal as a reason to go completely away from all our GI's prescription advice is crazy. Take the drug and keep track of your symptoms (everything: fever, diarrhea, headache, joint pain...). If you can tolerate some of the side effects then it may be worth doing so. I believe now that Imuran was responsible for my fever/chills that I originally though was just a symptom of having the UC flare...But, because I lasted through the several weeks of that I am now headed toward remission. The companies making these herbal meds have zero rules for what they have to produce. It's been proven that what's advertised on the label is not what you're getting a significant amount of the time. You think you're ordering an herbal supplement of certain strength and sometimes there is not any of that medicine in there at all. I'm not making the argument that Imuran is safer for your body than natural extracts from plants but there are no rules for what you buy in supplements. Just be careful about doing away with all prescription meds because you had a bad reaction to something your doctor prescribed.

 

I go to the sites folks here post where they purchase their meds and wonder what kind of processing plant these supplements come from. Is it a family owned business where the kids are out picking the plants and the mother is boiling the stuff in her kitchen...there are no rules. In our business we visit the facility to assure what we're getting is safe...anyone can buy pill casings, bottles and label makers and sell you (whatever?) stuff; you have no idea what you're taking...now that's scary to me.

 

 

Posted 1/1/2010 5:17 PM (GMT 0)
Burli....scary isn't it? I think the same way.

q
Posted 1/1/2010 9:04 PM (GMT 0)
That's why I get all my vitamins and supplements from well-known stores--such as the drug store or Whole Foods. I'm sure there are some reputable online companies, but I feel safer buying from well-known companies that sell their goods in actual stores. I'm lucky in that I live close to many such stores.
Posted 1/1/2010 10:08 PM (GMT 0)
I'm not sure I agree. I think more people die due to medical malpractice in hospitals or from eating contaminated peanutbutter etc. than from dangerous herbs. I haven't heard of any such cases.
Posted 1/1/2010 10:40 PM (GMT 0)
Just because you haven't heard about the deaths and health problems from supplements doesn't mean it's not happening. All the major news networks have done specials about the dangers of taking them (it's a common occurrance if you do a little research) and the public's outrage as to why this problem is not corrected. It's because they are labeled as food and not drugs. While drugs must be proven "unsafe", supplements have to be proven dangerous. It's much easier to prove a product is unsafe, than it is to prove that a rare reaction, beyond a shadow of a doubt, is harmful. One reason getting proof is so hard, is that supplement makers don't have to report adverse events; they only publish supportive testimonials...so if there are those out there that wish to believe it wrong to throw negative light about some of these supplements or special diets; maybe you should make very certain that the help you're experiencing is truely, beyond a shadow of a doubt, due to the supplment you're taking along with all that other suff and not something else from something else. You just may be advising someone to take something that causes them significant ill.
Posted 1/1/2010 11:00 PM (GMT 0)
Burli,
I agree, but at the same time are they more risky than many mainstream treatments? Many IBD drugs have not been tested on pediatric patients and Remicade was actually banned in Canada for pediatric use but now it is used (thanks to a little lobbying) without really having any clinical trials on its effects on children. They have not had to prove anything in regards to its safey in children
Posted 1/1/2010 11:27 PM (GMT 0)
I pick my herbs from my backyard and my chicken eggs come from my neighbor. That's about as reputable a source for food/herbs for me.

Don't buy in to the med-hype. Those meds are barely tested before they hit the market. How do you know for sure that they're safe just because the government supposedly inspects it. It's a hit or miss what we put into our bodies nowadays. I mean, people get sick and die from "USDA" inspected ground beef. Watch Food Inc. It'll give you a different perspective on food. I trust the family owned businesses more than the big money-making ones.

But again, I'm on meds. I have no real side-effects to speak of from them. I also think that my alternative stuff is supporting my overall healthy body. I'm in total remission. I'm happy and thankful for both modalities of medicine.
Posted 1/2/2010 4:06 AM (GMT 0)

A doctor usually knows their patient, (they do blood work, vitals, ask about family history, and check what other drugs the patient is taking and what other conditions the patient has...). They usually know the medication and prescribe it based on what the patient needs. Supplements are handled differently. Many sort of consider them natural and safe and good for us just because of what we read about them and how others say they have been helped by them. Even the word “natural” sounds safe and desirable. Many start taking these supplements without considering that they are different then the person who may have suggested them.

Manufacturers of supplements have no standards, nobody inspects their products (unless its Dateline, NBCNews, 60 Minutes, etc. doing an undercover story behind what's actually in the pills or products versus what is supposed to be in them and what adverse reactions people with certain conditions have had). I buy supplements and take my risks just as others do but what's the harm in running these by your doctor before you decide to add them to your list of drugs...there are interactions they need to know about. It's easy to get caught up in adding supplements and making special diet changes when you're so desperate to fix what the medical community can't seem to be able to help you with.

 

I like learning what others have tried and been helped by so I’m not trying to squash this thread but to someone new to UC, before you just read about something helping someone else and think about ordering it to try some yourself…just run it by your GI first to see it you’ve overlooked something.

Posted 1/2/2010 5:10 AM (GMT 0)
To tell the truth, I don't have much faith in the US's medical system. It's a system based on profit. Many times what is good for profit is good for the patient. But when the two conflict, guess which one wins.

There will always be horror stories. I remember when my oldest daughter was a baby. I would buy her 100% apple juice. The juice was made especially for babies and it was produced by one if not the largest apple juice company in the US. I forget which one it was, but it was and still is a large manufacturer of apple juice in the US. It turned out the apple juice was not 100% pure. It was a big scandal at the time and they quickly cleaned up their act. But I had been giving my daughter this apple juice almost every day for a year. The point is, that there will always be horror on both the alternative and western medical side. That's why we need to be careful, but it shouldn't keep us from using alternative treatments or western medical treatments completely.
Posted 1/2/2010 5:29 AM (GMT 0)
Burli,
I wish I could ask my daughter's GI, but she has informed me that probiotics are not indicated for UC and can be dangerous so not to use them. Then she wrote a sript for pred with her pen marked "Imuran". We are in the process of trying to move to a new hospital with better pediatric GIs.
Posted 1/2/2010 6:50 AM (GMT 0)
Of course nothing is without possible side-effects or danger, natural or not, for example, with chamomile, if you're allergic to ragweed then you should avoid chamomile...if you're allergic to bees you should avoid all bee producst as well and that includes topicals. I'm just glad I'm not allergic to either of the above mentioned...it's nice taking things that have not given me any side-effects either and they are helpful to my needs.

:)
Posted 1/2/2010 2:09 PM (GMT 0)

As far as money goes, I have two doctors in my immediate family and they don’t put profit over the patients health…that’s real for a minority of GI’s but that’s also paranoid thinking.

 

I run it by my doctor then look for another doctor that is more acceptable of the treatments I like want to try. I asked my doctor about the vitamin B deficiency and lyme disease (two things brought up by others in here and they he was very informative as to shy I didn’t have to be concerned with those).

 

It’s a shame if your GI is still not on board with probiotics. Maybe there is a separate issue with probiotics and children and he’s not explaining. I mean common, 15 years ago I got the same reaction from another GI I had but now all the GI’s in the center I go to suggest taking them. I had no problem getting a prescription for VSL#3DS but you have to come go in  informed with options (not just “I refuse to take the drugs you want to me)…you can’t just go in babbling about how all these “pharmaceuticals” are profit evil drugs and you want to go all “natural” for your treatment (they will shut you off of any intelligent conversation…you have to have logical evidence backed up by published studies (published in reputable medical journals they should be reading) before they will give you any credit at all. It’s taken me years to build up a reputation where I can talk to the doctors about my treatment in a way they will listen and not just hear me complain, feel my belly and then prescribe what they were going to before walking in the room.

 

They are catching on but it seems we need to educate ourselves about the dangers we may face ourselves. Maybe I’m not giving everyone enough credit but, just as pb4 said about being careful taking the products she recommends, if you are allergic to ragweed or bees, when you should not take two of the supplements she’s on. You really have to know your body and we don’t have the luxury of getting blood work assure ourselves if we should supplement with iron or vitamin D.

 

You may get sick from apple juice or meat or other standard mass produced foods that the FDA has passed strict rules for how those processing plants should be run but workers cheat the process in plants. I still get concerned though when I see an official looking web page (which my 11 year old can create) or a product supplement on a shelf. I wonder if the people making those things have the same attention to detail as I do and are actually filtering out what is harmful and putting in what their supposed to or are they like those freaks that I know at work who believe that germs are okay, nothing is out of shelf life, nothing needs washed and we’ll sell it to them and they won’t know if it helped them or not…the label looks good then we don’t ever have to worry about whether it’s safe and who will know if we put what we say we’re putting in there.

 

I work for the government on the technical side. It’s so easy for companies to make themselves look legitimate to us with nice looking samples. We always insist on visiting their facilities too assure they are going to delivery consistent, high quality, products. Many times we go to their “facilities” and discover it’s a filthy trailer, family run business where the kids are doing the work and have no idea what’s important to the final end product that they are selling is being used for. I draw that experience to think about if I was to consume what they were making. They always lie about what their capabilities are; the exaggerate the good points and omit anything negative.

Posted 1/2/2010 7:57 PM (GMT 0)
Just my 2 cents- prescription drugs were useful for me to help with symptoms, especially Rowasa. Some actually made me feel much worse. After 8 years, I realized there was no exit strategy taking the meds. So, I researched on my own, was scolded and balked at from my Gi's, went on an antifungal diet anyway, took natural antifungal supplements along with probiotics and reputable beta glucan (immune booster) and got well. I still try to stay away from processed foods, especially those with HFCS (a poison), yeast foods, and limit wheat and corn. No meds, no symptoms and still going strong. Doctors should be a partner in whatever your decision is when you make changes to your diet or drugs. However, just because your GI doesn't believe in naturals, like probiotics, don't accept that as the gospel. Doctors were only trained in how to treat symptoms using prescription drugs. Do your own research, read others' stories and learn from them. Trying a natural route (along with traditional medicine, if necessary) may, or may not be the thing that gets you well again.

Posted 1/2/2010 10:11 PM (GMT 0)

I appreciate this back and forth…I’m glad folks are not taking my posts as arguments but as back and forth discussions in order to educate myself…this is the way I learn so thanks for your patience.

 

Kim 123: My brother-in-law (the Internist who's wife, my sister, also has UC; he also has an autoimmune disease that he had to end up reading up on in order to semi treat himself) believes UC may be fungus related. He and my sister got so frustrated with the “expert” GI my sister was seeing not listening to her about the fact that probiotics (VSL#3, specifically) were helping her that my brother-in-law decided to treat her himself; that wasn’t the only reason (I believe she could not get into to see this expert in an emergency situation once and we all know the significance of getting right on the first onset of a flare).  He said he would treat me if I were interested--I’d have to see him as a patient of course. That’s really what all of us need is a doctor with a personal interest in our health. So I understand where many of you are coming from and some are lucky enough to have that already with the GI’s you have. In some aspects I (with the help of this forum, my brother-in-law and experience having this disease so long, educate my GI about my disease and treatment options). For instance I’m going to tell him to stop the Remicade and lower the Imuran once things are stabilized; I just need him to monitor my white blood cells monthly. But, they also own the prescription pad and I hope they know more about the rest of the human body than I do making them more educated at ordering other blood work, etc. I hope my GI knows more about general medicine and the many other issues going on with the rest of my organs than I (am I giving them too much credit?).

I still believe I may make the switch to my brother-in-law if this current GI doesn’t listen to me the next time I tell him I have a flare starting; when I first told him I had mucus he said that can come with other illnesses (I should have been more persistent).

So Kim 123: Did you just go off the GI grid (so to say) and do away with all your prescriptions and treat yourself as though your UC was, indeed fungus related? That take some guts…were you flaring at the time and, if so, how bad. What exactly are you taking now and how long have you been in remission (do you call it remission?)

It sounds like you just stopped going to your GI and created your own path. What about blood work and if you were to have a flare would you see the same GI? What about getting colonoscopies?

 

Sorry for all the questions but I have a GI appointment coming up next week and I going in armed with information…

Posted 1/3/2010 1:01 AM (GMT 0)
I need to say that you nailed it right on the head, Burli, about a GI "with a personal interest in our health". I guess that's another reason why I've leaned towards alternative methods. I've talked to three GIs. All wonderful people. All very busy. and if I wasn't in the red zone, flaring, with a hemoglobin RBC of 6, they certainly did not pay any attention to me or my condition simply because there were so many other people who were in considerably worse shape than I was. All of my alternative practitioners became very good friends of mine who took an extreme interest in my condition despite how busy their schedules were. There was heart in the practice and I appreciated that. They even call from time to time to check up on me.

My current GI is from Cedar Sinai in LA and he writes the books on new information on Crohn's and Colitis. He taught GIs in the west and Hawaii about the diseases so i figure he knows his stuff when it comes to this. And he is also the president of the CCFA. One of the most inaccessible people I know. He's a friend of a friend. And I didn't meet him until last December when I finally got an appt and drove 5 hours to LA to see him myself. Before that, we kept email contact with each other and he would prescribe me drugs and my drug therapy based upon my email correspondings. I had issues with him telling me what to do because he was so terse and inexpressive in the emails. But I agreed to follow what he said and I got better and then I met him and he's a wonderful person. Just super busy. I have to be on him about my blood tests and prescriptions because he certainly isn't keeping track of that.

He said that he also wants me to be healthy and he wants me to include him in my team of health practitioners. He doesn't want to be the bad guy and he doesn't want to be ignored. He understands the disease to the molecular level. I told him about my moral issues with pharmaceuticals and he totally understood and he knows of a few of his clients who have had success in ditching the drugs and going natural. He said for my case, I was in moderate to severe, I couldn't take that gamble so early in the diagnosis. I needed to respect that...

Once he showed heart, I started to relax and go with the flow. But I'm also learning to help myself in the process...
Posted 1/3/2010 3:32 AM (GMT 0)
lftc: that smart water does the same to me; I've read about the benefits of boswellin but, to me, it's almost like you would have to live in India to be certain you were getting the right stuff. Doesn't it have to be the sap extract from a specific species of tree? This is where I reference my earlier posts about not really knowing what you're getting (I'm also afraid of any potential harm it may cause)...I guess you've had good success? this is another place where some government funding is needed.

bebushka: it seems that once the doctors get good enough they don't have time for you...i think me also being in the moderate to severe UC catagory is the bottom line that keeps me from abandoning the more harmful traditional meds that alter the immune system.

My sister has it best as she is married to her doctor turned active GI now...I've probably just convinced myself that I'd be better off going to him as a brother-in-law who cares about me on a personal level.
Posted 1/3/2010 3:42 AM (GMT 0)
I'm going to have this locked due to length. Please start using PART II please!
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