General Diet/Lifestyle UC Advice

hpluc17 - It's not you, it's people like Natof9 who prey on people's fears about taking medicine which seriously crank me. Not only did he (or she, whichever) get everything wrong about mesalamine, he failed to mention one of its big positives: reducing the risk of colorectal cancer.

Mesalamine protects against colorectal cancer in inflammatory bowel disease

As for YouTube vloggers, bloggers, and so on, I'd take everything you watch and read with a massive pinch of salt. Are they making money from their claims? Chances are they are, either directly by selling supplements, or more indirectly through ad revenue. The more extravagant their claims, the more likely it is to be bullsh!t. Another thing to consider is did they ever really have UC? Or was it temporary acute colitis, severe food intolerances, or even some completely unrelated condition? Millions of folks have IBS and the symptoms can be very similar to UC - diarrhoea, cramping, abdominal pain, urgency.

As for doctors, if you can't trust doctors, then you certainly can't trust bloggers either. Instilling fear of doctors is just another way in which these people are preying on you. Doctors aren't perfect and, like with any group of people, some are better than others. But for the most part they are simply trying to do their best with imperfect knowledge - absolutely disregard anybody who claims to have cracked the mysteries of IBD, that's a sure sign of a crank. There is still an awful, awful lot we don't know about IBD. The closest we have to a 'cure' for UC is surgery and, while it does work very well for the majority who have it, that's a blunt tool if ever there was one.

Medications are slowly getting better, both in quantity (more choices) and quality (fewer side-effects). They're not perfect by a long shot, but even compared to 30 years the med situation is a lot better. And in another few decades, I imagine the meds will be far better than they are now.

Basically, in a nutshell, medication is your best chance at healing. Food does not possess any intrinsic healing properties. There isn't any food in existence which has been demonstrated to heal the colon/rectum, unlike meds. Diet probably does play a role in UC in some people (most likely via altering the colon's microbes), but it's ridiculously complicated, little understood yet, and just one puzzle piece out of tens or hundreds of other pieces.

If the pills really are too big for you to swallow, ask your doctor if there's another brand you can try. Maybe even make another thread about it. I can't help much on that front, because I'm not terribly familiar with mesalazine: ironically enough I have never been able to take it because I have a severe intolerance reaction to it >_>. (Mesalamine intolerance is very rare, so don't worry about that. I've never had any problems with the stronger meds either.)

It's not fashionable to say it but I honestly think 99% of alternative treatments are placebos. But hey it's not my money and if people are satisfied, who am I to tell them not to do it? If, however, you're like me and poor and can't afford any of this stuff then just console yourself with the knowledge that virtually none of it works anyway.

Yeah, pretty much everything that isn't medication I think of as "alternative". There are studies on some of these things, but they always seem to be a) tiny and b) piss-poorly designed. Somebody posted a glowing account of qing dai, so I googled it - once again it only had tiny, piss-poorly designed studies to back it up.

I'm not saying it isn't worth a go. But in reality every single alternative therapy that you can name appears to work wonders for one or two people on this board, but hardly any more than that. You've probably heard of LDN, or Low Dose Naltrexone? Well, a few years ago that was touted as being a miracle treatment for a wide variety of ailments, including Crohn's, MS, etc. I was actually interested in LDN at one point, because there was a pilot study which showed that 86% of Crohn's patients apparently got into remission on LDN. But that was about 10 years ago and there has been no more research since then that I know of: LDN has just fallen off the radar.

Basically, studies using only 10 people, no controls, relying on retrospective recall, etc. are worthless. Particularly with the placebo effect being as strong as it is.

Like I said before I'm not saying alternatives aren't worth a go. But there's so very many of them, and most of them aren't cheap. If I was well off I'd probably play around with them, not expecting very much (hey, I'm a pessimist). But I'm poor and I just don't have the money to blow on unproven therapies. I don't mind people recommending alternatives; I just don't particularly like alternatives being treated as medicine's equal, because I don't think they are.

NiceCupOfTea said...
hpluc17 - It's not you, it's people like Natof9 who prey on people's fears about taking medicine which seriously crank me. Not only did he (or she, whichever) get everything wrong about mesalamine, he failed to mention one of its big positives: reducing the risk of colorectal cancer.

I wasn't going to reply, because I prefer not to debate others on their belief systems and ideologies(your last post pretty much sums up that you cannot be reasoned with)- but if I was a scaremongerer I wouldn't recommend that OP finishes his medications nor would I be working at a hospital personally injecting poison into patients. I myself have gone the pharmaceutical route, but I do not believe it is the end all, be all for a lot of us.

I did not get everything wrong about mesalamine. I am simply pointing out another perspective, another side to the FACTS that people like you hate to look at.
In high levels almost everything can be toxic. In small levels the toxins are manageable to the body, but that solely depends on the body's ability to metabolize and excrete the toxins. It's why some people with weak immune systems prefer to avoid eating too much fish for fear of Mercury poisoning or most people decide not to live next to the nuclear plant. Me pointing out the facts is not meant to hurt or upset those who must rely on their medications. I point out the importance of taking medications during flare ups on other (more naturpathic) forums and am met with the same hostility.

Anyways OP I wish you a swift recovery and journey towards remission. It is your life, your health. Listen to your body and make choices based on your research and information health professionals/other IBD'ers can provide. Of the choices that are available to you in that moment- consistently and always choose the option that is the most compassionate and life affirming to yourself.

nor would I be working at a hospital personally injecting poison into patients.

Wow.

I did not get everything wrong about mesalamine.

I'm afraid you did, chap. I know, because I corrected everything you got wrong.

choose the option that is the most compassionate and life affirming to yourself.

Presumably this includes knowingly injecting poison into people. Very compassionate and life-affirming.

NiceCupofTea said...
Not only did he (or she, whichever) get everything wrong about mesalamine, he failed to mention one of its big positives: reducing the risk of colorectal cancer.

We have finally found something we can agree on, that mesalamines can be very valuable tool for IBD and can reduce cancer risk. But you are missing the risks to health posed by the stronger biologics and immunosuppressants. Essentially they suppress your immune system making patients vulnerable to myriad opportunistic infections including cancer:

Somebody said...
Another ”black box” was issued in 2008 describing cancer occurring in children and young adults who began taking TNF blockers, such as Remicade, Humira, and Cimzia, along with immunesuppressive medicines such as 6-MP. The FDA “fixed” this problem by updating the 'Warnings' section on the drug label.

www.huffingtonpost.com/rebecca-kaplan/social-security-administr_b_6404952.html
Patients with IBD depend on medication (antibiotics, anti-inflammatories, steroids, and immunosuppressants) to control the inflammation, ulceration, and pain caused by these diseases. While beneficial, these medications can cause severe side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and potentially serious or fatal infections.

www.adrugrecall.com/remicade/skin-problems/
A May 2006 study published in the Journal of the American Medical Association was the first to find that rheumatoid arthritis patients who take Remicade are three times more likely to develop skin cancer than those who don't.

I am not saying don't take the big gun meds if they are necessary for remission. But don't ignore that they do have some health risks.

NCOT said...
There isn't any food in existence which has been demonstrated to heal the colon/rectum, unlike meds...
It's not fashionable to say it but I honestly think 99% of alternative treatments are placebos...
pretty much everything that isn't medication I think of as "alternative". There are studies on some of these things, but they always seem to be a) tiny and b) piss-poorly designed...

The meds that both you and I love so much, mesalamines, are derived from Salicylates which are found in some plants such as white willow bark and wintergreen leaves. Aspirin is also derived from those salicylates which have been used for its health effects for at least 2,400 years. You cannot get more 'alternative' than that.

I guess you believe that the alternatives that largely kept me remission all these years must be “placebo”. But strict double-blind studies have shown that psyllium seed (what I found to be so effective), probiotics such as VSL#3 and Lactobacillus GG, boswellia, curcumin, etc. to be effective for IBD. These were not “piss-poorly” designed but used strict double-blind protocols.

If some of the sample sizes were relatively small it can be best explained by the LDN website below, that there is little incentive for large, expensive clinical trials for a drug that cannot produce revenue for Big Pharma. But there is no reason why an IBDer should not try some of them especially if the other option is the “big gun” meds. Some of them worked for me.

www.lowdosenaltrexone.org/gazorpa/History.html
Naltrexone in substantially lower doses (Low Dose Naltrexone) is showing great promise as a treatment for multiple sclerosis, Crohn’s disease, AIDS, rheumatoid arthritis, celiac disease, CFIDS, lupus, and certain forms of cancer.

Unfortunately, obtaining FDA approval for LDN will not be a straightforward process. Since naltrexone is now a generic drug, no pharmaceutical company currently holds exclusive manufacturing rights. No company is eager to fund an expensive clinical trial for a drug that will make them so little profit.

However, even without governmental approval or corporate support, LDN is gaining significant grass-roots attention among patients and doctors. The exchange of research information over the internet has greatly accelerated the recognition of the off-label use of LDN.

Post Edited (IamCurious) : 5/28/2017 6:53:37 PM (GMT-6)

Quincy is right. Mesalamine does not contain aspirin as the active ingredient. In fact it don't contain aspirin at all. Aspirin has been shown to potentially CAUSE bowel erosions in some people and is a known risk factor for flares of UC. Putting aspirin in a UC medication would be self-defeating and stupid.

Mesalamine = "5-ASA" = 5-AminoSalicylic Acid.
Aspirin = AcetylSalicylic Acid.

Acetylsalicylic acid is NOT the same as AminoSalicylic acid.

beave said...
Mesalamine = "5-ASA" = 5-AminoSalicylic Acid.
Aspirin = AcetylSalicylic Acid.

Acetylsalicylic acid is NOT the same as AminoSalicylic acid.

Quincy said...
Mesalamine is 5-AminoSalicylic Acid. It does not have AcetylSalicylic Acid or aspirin in it. They are both derived from salicylate. The ASA does not mean aspirin in mesalamines aka 5-ASA.

Just to clarify a huge misunderstanding.....

Quincy,

Thanks for the clarification.

Both aspirin and mesalamines are derived from Salicylates which are found naturally in some plants such as white willow bark and wintergreen leaves.

IamCurious said...


I guess you believe that the alternatives that largely kept me remission all these years must be “placebo”. But strict double-blind studies have shown that psyllium seed (what I found to be so effective), probiotics such as VSL#3 and Lactobacillus GG, boswellia, curcumin, etc. to be effective for IBD. These were not “piss-poorly” designed but used strict double-blind protocols.

If some of the sample sizes were relatively small it can be best explained by the LDN website below, that there is little incentive for large, expensive clinical trials for a drug that cannot produce revenue for Big Pharma. But there is no reason why an IBDer should not try some of them especially if the other option is the “big gun” meds. Some of them worked for me.

www.lowdosenaltrexone.org/gazorpa/History.html
Naltrexone in substantially lower doses (Low Dose Naltrexone) is showing great promise as a treatment for multiple sclerosis, Crohn’s disease, AIDS, rheumatoid arthritis, celiac disease, CFIDS, lupus, and certain forms of cancer.

Unfortunately, obtaining FDA approval for LDN will not be a straightforward process. Since naltrexone is now a generic drug, no pharmaceutical company currently holds exclusive manufacturing rights. No company is eager to fund an expensive clinical trial for a drug that will make them so little profit.

However, even without governmental approval or corporate support, LDN is gaining significant grass-roots attention among patients and doctors. The exchange of research information over the internet has greatly accelerated the recognition of the off-label use of LDN.

Cherry picking. Yes, small studies have shown benefit from these things, and from several other things. Other small studies have shown no benefit at all from these exact same things. The proponents 'cherry pick' the positive studies and ignore the studies that don't have the results they like to see.

Entities such as universities, funded through government grants, or the CCF, or European institutes funded by their goverments, have the resources and ability to do larger studies on LDN if they were so inclined. The fact that they haven't bothered is telling, to me at least. They choose to use their limited resources where they think the most promise is, and that hasn't been LDN.

Speaking of which, there is currently a large study ongoing for using a nutritional supplement ("nutraceutical") for treating Crohn's disease. It has gotten all the funding needed to proceed with large, expensive, multi-centered studies. Yet it's simply an amino acid supplement. Kinda shoots holes in all the conspiracy theories about BIG PHARMA hiding natural treatments or cures, or refusing to support research on them because of money issues.

Update:

Hey guys, thank you for all the help. I have decided to take your advice and I started taking Apriso everyday, I'm supposed to take 4 pills a day but they're huge and it takes me a while just to take 1 so that's all I've been taking and I also incorporated some other things such as banana, spinach and kefir smoothies everyday and veggies, fruits and rice and potatoes mostly throughout the day. My bleeding did stop but just sometimes I'll have a little bit of blood. So do you think I should increase the dosage of Apriso or no? Also, I looked up Uceris and a lot of people had bad side effects from it so I decided to not take it since my symptoms aren't that bad. Is this unwise of me? Should I take it?

Per advice of any GI doctor, not taking meds is extremely serious and leave you worse off than before. I could understand the homeopathic approach, but with all due respect it is no common cold. Ulcerative Colitis is a chronic inflammatory disease. In my opinion, I'd at least stick with Lialda. Mesalamine can reduce inflammation that can cause colon cancer. Uceris is a much smaller steroid than Prednisone and in my experience did not need to be weaned off of it. You could do both. Better safe than sorry.