Category Archives: Nutritional supplements

My Ordeal With Doctors, Bad Advice, and Bad Prescription Drugs

I wanted to write a chronicle of my 1999-2008 medical ordeal with the ulcerative colitis (UC), and with the doctors, the doctors’ bad advice and prescription drugs that either made things worse again or caused new problems.

So, here it is.

My ordeal began during the 1999-2000 period. It was better by April 2000, but there were relapses between 2001-2005. It was under control from 2005 until 2012 when there was an unexpected relapse. (If there is bleeding with BMs I call that a “relapse” of inflammation.)

The UC condition has been better since 2013. But it is still a sensitive condition. And I can’t eat a lot of foods/drinks, especially most vegetables, so I have to have various supplements such as magnesium, zinc, vitamin K and K2, etc., as I have mentioned before. I did go through a lot of “trial and error” with foods at times between 2000 and the later 2000s. But I never have foods now that could aggravate things (not knowingly, anyway). And I have foods that actually have anti-inflammatory properties.

To begin, in September and October 1999 there were about 10-15 times to the bathroom per day, and with bleeding. The bleeding was probably stimulating the extra BMs. The primary doctor during that period indicated that I had had a low blood count, low protein level, and my weight was in the range of 117-125. (I am approx. 6 feet.)

In September 1999 the proctologist doctor did a “flexible sigmoidoscopy,” diagnosed the UC and prescribed Rowasa enema. Things got better by mid-November and December of 1999.

However, the primary doctor was concerned about my continued low weight, and he suggested I add more calories to gain weight.

The primary doctor suggested I eat bran and whole wheat. At that time I was unaware that bran and whole wheat are irritants to the colon, even with people with normal digestive systems, so I did what was suggested. And by January 2000 the colitis was worse again.

But I didn’t see the relationship between my eating bran and whole wheat and the worsening UC relapse, and continued eating bran and whole wheat. I was also going back to eating normally perhaps a bit too soon. (Perhaps the doctor should have known not to suggest bran and whole wheat to a colitis sufferer?)

Another thing at that time in the primary doctor’s concern over my continued low weight was that he wanted me to have an upper GI series, because he thought there might have been something else going on. So I had a GI series, and I believe that the GI series barium reaggravated a “pylorospasm” (spastic pylorus) that I had during the mid-1980s that interfered with food digestion. The spastic pylorus continued to compound the relapsed colitis symptoms from January through March of 2000.

And so in January 2000 with the UC worse again, with multiple BMs per day and bleeding, this time I was having trouble retaining the Rowasa enema. And then the proctologist gave me Asacol, an oral tablet, which was supposed to be a timed release kind of thing, to prevent systemic absorption.

But apparently not. My side effects of that Asacol included swelling in the lower legs, feet and ankles. At one point, I could hardly walk. And there was also swelling in the scrotum. So the proctologist doctor switched me to sulfasalazine oral tablet (I think the timed release version) combined with Cortifoam, another rectal drug.

Regarding the lower legs/feet/ankle swelling, one of my parents suggested I try compression socks that go up to just below the knee. The swelling almost disappeared by the next day after putting on those socks. But did any doctor suggest the compression socks? Nope.

And so during this time of March 2000 I was also trying to be more conscientious with my eating habits, now that I was a little more informed about the relationship between foods and these digestive issues. My mother suggested Ensure to give me more calories and protein to help me to gain more weight. Of course, none of the doctors suggested that.

Also at that time I was taking Xanax, and I am way against those kinds of things. But I needed something to help me through this whole time that was going on for months now. It was extremely stressful. So with that anti-anxiety drug, the sulfasalazine and drinking Ensure, by April 2000 the condition and symptoms were a lot better (again), and the bleeding was gone.

I continued with the sulfasalazine as an ongoing daily medication. The weight got up to the mid-130s and stayed there maybe for a few years (now it’s about 140-142).

After an August 2001 colonoscopy, that colonoscopy doctor said there was still inflammation in the colon/rectum, so he advised that I go from 1 sulfasalazine tablet 4 times per day to 2 tablets 4 times per day. So I did that. He didn’t ask about or mention anything about foods or suggest any changes in my diet.

There had been bleeding-BM relapses that lasted about 4-5 months each, in 2001, 2002, 2003, and December 2004-April 2005.

In 2004 and 2005 I learned more about “natural anti-inflammatories.” I began taking fish oil softgels around April of 2005 because I learned that they are high in omega 3, which has anti-inflammatory properties. And in late 2005 I began taking acidophilus probiotic pills.

However, just to digress a bit, by about 10 years later I learned that it may not be a good idea to take fish oil or omega 3 supplements in the long term, like more than a year. (For example, see this article.) So I gradually reduced and then eliminated the fish oil softgels and tried to just eat fish, which was recommended. However, the fish was a problem with my sensitive digestive condition. I tried different kinds of fish, and cooking it or fish in a can such as sardines. Alas, it appears that fish causes my digestive system trouble, for some reason.

So as a natural omega 3 alternative to fish, I’ve been getting the cage-free eggs that all say a minimum of 70 mg of omega 3 per egg. Or brands that say it has over 100 mg per egg.

As far as keeping inflammation low or preventing it in the lower digestive area, the acidophilus is most important, as far as I’m concerned. But as I have written quite a bit now on my blog, having foods that have anti-inflammatory properties (such as extra virgin olive oil) is helpful, and not having any kinds of foods that could be pro-inflammatory is helpful (or necessary, in my case). No junk food or processed foods, no insoluble fiber, nuts, etc.

At the August 2005 colonoscopy, the new colonoscopy doctor told me to increase from 2 to 3 sulfasalazine tablets 4 times per day. He said nothing about foods or nutritional supplements at that time. So I increased the sulfasalazine and continued that over the next year.

However, later in 2006 at my annual physical examination, the new primary doctor said my blood pressure was unusually high. It had been on the low side for decades, according to previous doctors. So after some investigation on the Internet, I learned that one possible side effect of sulfasalazine is that it could affect your potassium level. And a low potassium level can cause or contribute to high blood pressure.

So I reduced the sulfasalazine, and the blood pressure went back down to more normal levels. (But now when I check that on the Internet 12 years later, there are no articles mentioning the relationship between sulfasalazine and potassium, as I saw then. Why is this?)

And by the way, regarding sulfasalazine, besides its possibly contributing to reducing potassium level, it also could cause a depletion of folic acid. And folic acid is something that’s very important for colon health! So two different colonoscopy doctors both told me to increase sulfasalazine but did not tell me to make sure I supplement with folic acid! They MUST know about sulfasalazine’s effect on folic acid! So that one bothers me, too. How could they not know that?

My 2007 colonoscopy, by the way, showed a reduction in inflammation, despite my discontinuing anti-inflammatory prescription drugs earlier that year and concentrating on nutritional supplements.

I “discovered” the acidophilus/probiotic supplement in late 2005, and began taking those at that time. I didn’t have any relapses with bleeding between about April 2005 and November 2012, and I attribute that in large part to taking the acidophilus supplement.

In November-December 2012 there was a relapse with bleeding for the first time in 7 years. By early 2013 I realized that the acidophilus I was taking wasn’t as good as it was in the first several years of taking it. The reviews of that particular product on Amazon seemed to confirm my suspicion. So in 2013 I switched to a different acidophilus product. And things have been much better since then.

At my 2007 colonoscopy I told the doctor (not the earlier GI doctor from 1999-2001 but the new one from 2005) about the acidophilus and how that seemed to make things a lot better since two years prior to that. And he said that he was a “big fan” of acidophilus. So I was wondering why, in the previous colonoscopy, he didn’t tell me about the acidophilus/probiotic supplements.

And why didn’t any of my primary doctors tell me during those years?

That colonoscopy doctor did, however, try to push the prescription anti-inflammatory Asacol on me at that time. That was the drug I had in early 2000 that caused swelling in the legs, etc.

Besides trying to push Asacol on me, in the examination room he had coffee mugs with the name “Asacol” on them, and his clipboard he was using had “Asacol” on the top! So this was quite a learning experience. And he was the head of endoscopy/colonoscopy at a major metropolitan hospital at that time!

And then after the 2008 colonoscopy, that same colonoscopy doctor advised that I see another specialist because of some issue with that colonoscopy that the doctor didn’t explain. So I saw that so-called specialist who said that that particular colonoscopy biopsy showed “markedly regenerative glands with neutrophils,” but “indefinite for dysplasia.” The specialist wanted me to go have another colonoscopy in just 6 months!

I asked that “specialist” GI doctor to further clarify the issue. And he said something along the lines that “regenerative glands with neutrophils” meant either that the colon tissue had been “regenerating” (a good thing), or that it was a sign that there were cells developing that could show “dysplasia” (or possibly cancer cells).

Well, my own conclusion was that “regenerative glands with neutrophils” meant that the colon was really healing after those earlier years of inflammation, bleeding, etc., and that it was not a sign of developing cancer.

And so given how stressful those colonoscopies were for me (including the day-before prep!) I decided to take the chance and not go in for that next requested colonoscopy. I concluded at that time that those doctors were just full of it and that they wanted to make the hospital more money, quite frankly. (And see this.)

By the way, I have not had another colonoscopy since 2008, thank God. And, incidentally, while the 2001 colonoscopy had “old, dried out polyps,” according to that first colonoscopy doctor, my 2005, 2007, and 2008 colonoscopies all showed NO polyps. (Humph! to them for putting me through all this crap, for years, and for no good reason!)

Now, back to my own nutritional treatments. So in the 2007-08 time I continued with acidophilus, fish oil softgels, quercetin (an antioxidant  bioflavonoid), vitamin D, guar gum for soluble fiber, and folic acid, mainly.

As I wrote on my blog, regarding drinking Ensure, it’s probably not a good idea to have that in the long term either. Ensure is high in sugar and has corn oil and corn maltodextrin, as well as a lot of synthetic “vitamin” and mineral ingredients. I started that around March of 2000. In September 2013 I began to gradually decrease that from four 8-oz bottles per day to 3, and then 2, and 1, and my last bottle of Ensure was in June of 2016.

I gradually decreased the fish oil from about early 2014 and stopped that by around March of 2016.

And I’m not saying that my colon is all better, not at all. It’s still a very sensitive condition, and I can’t eat a lot of things, as I mentioned at the top.

Starting in September 2013 I added hard-boiled eggs to my daily diet. In 2014 I added extra-virgin olive oil and carrot juice (100% juice, no fiber). And (I think by 2015 or ’16) I added concord grape juice. And I also have apple juice. It’s 2 servings per day of each of those three juices, which I don’t believe should be a problem (as far as carbohydrates or sugars are concerned, but I could be wrong).

And I also switched from margarine to organic butter. Butter and whole milk contain milk fat, which I had read has anti-inflammatory properties, especially for the digestive system.

An additional thing that I have is whey protein. I know that it’s not a good idea to have too much protein per day, not more than 200 grams, I think. But I don’t have that much. The main reason for the whey protein is that it contains natural amino acids and L-glutamine, which have been shown to repair damaged colon tissue (e.g. damaged from inflammation). And I refuse to take any of those prescription anti-inflammatories, unless I really, really have to.

But I had to learn about all those nutritional factors, for colon support and to help prevent any further ulcerative colitis, from the Internet, not from doctors. And I do extensive research on everything, such as checking multiple sources.

So I didn’t learn one thing about nutrition from any “doctor.” It was quite the opposite, in my view. Doctors were mostly pushing their damn prescription drugs, as well as giving harmful advice, or withholding information.

And that’s been my general experience, especially with this ordeal since 1999. I really believe that my lower digestive condition right now wouldn’t be this sensitive, and that I probably would still be able to have more foods including some vegetables had the first doctor in 1999 not given me bad advice and had I been informed much earlier of the effects of diet, and had I known about the probiotic supplements earlier. I don’t believe that I would have had those relapses (that may have had a cumulative weakening effect on the colon) from 2001-2005 and in 2012.

Advertisements

Some of My Issues With Dietary Supplements

Several times here I have mentioned my issues with some dietary supplements (as well as the prescription drugs). Because I can’t have certain foods especially most vegetables, because of my digestive condition (UC), I have to have certain supplements.

Magnesium is important for muscles, nerves and joints. However, it has been difficult and frustrating having a magnesium supplement that is bioavailable and that absorbs into the system, and doesn’t act as a laxative! Magnesium oxide is one of those forms of magnesium that acts as a laxative, so I don’t want that. Magnesium citrate and magnesium glycinate are the two forms that I’ve had that are best to absorb.

So here are some of the problems with magnesium supplements (some of which I have already mentioned here). In 2015 after having reduced the Ensure down to 1 per day, I was having problems with my muscles mainly in the arms. And I saw online that it could be magnesium deficiency. I think the Ensure that I was used to has magnesium as well as other minerals and vitamins. Well, the situation got a lot better after starting the magnesium citrate. In 2015-2017 I was getting the Vitamin World magnesium citrate. But in later 2017 my Vitamin World store closed down, so I had to find a different supplement. That was a very difficult process. I finally found the Bluebonnet magnesium citrate after having tried the KAL magnesium glycinate. There was something wrong with that KAL and I saw online that it got low marks in the purity category.

So while the Bluebonnet is (or was) good, I still have had some problems with these supplements, such as last Summer that was very hot and humid. And I learned that hot and humid weather can affect supplements. And there are other factors involved. And in the past month I am beginning to wonder if the Bluebonnet may not be as good now as it was last year. So this is frustrating. (I wish I could just eat broccoli and asparagus and all that stuff, but I can’t.)

And then there are other issues with supplements, such as containing other ingredients that cause problems. There’s no reason why, for example, Solaray’s “BioCitrate Magnesium” has to have “watercress leaf,” “dandelion root,” “alfalfa leaf,” and “parsley leaf.” Do they put that stuff in there just to be cool?

I wonder how many people take these supplements specifically because they have trouble digesting important vegetables? And other ingredients that might be harsh to digest. Do the supplement makers understand these things?

Why does Whole Foods 365 chelated zinc have to contain rice flour? I looked online and, while I know that rice is mostly (if not all) insoluble fiber, a cup of rice flour still contains not that much insoluble fiber. So there should only be a teeny-tiny amount of the fiber in one of these zinc pills. Right? I still had a problem with it. So I’ve been getting the Jarrow Formulas zinc, but I’m not totally pleased with it.

And why does Nature Made magnesium citrate have to contain “medium chain triglycerides”? I haven’t had it, but online sources state that medium chain triglycerides could cause gastric distress, something obviously someone like me doesn’t need. And it could also cause liver issues.

I also have been consuming whey protein for quite a few years. Whey contains natural amino acids and L-glutamine, which have been shown to repair damaged colon tissue (damaged, in my case, from inflammation), as well as aid in general muscle tissue replacement. Which is why body-builders use whey protein. However, many of those supplements contain a lot of extra ingredients that aren’t particularly good or healthy, such as artificial sweeteners, preservatives, etc. It is difficult for me to find a good product that’s reliable in my stores. And I don’t want to order these kinds of things online. I was getting one product at Trader Joe’s but they haven’t had it for a few months, so I have to get it at Whole Foods, at $15 more than I was getting it for at Trader Joe’s. Frustrating. A similar product, the same brand but a different variety (and with ingredients I don’t particularly want) is available at GNC.

So magnesium, zinc and vitamin K2 are especially important, and I have to have these supplements. That’s the way it is.

“Relief Factor” and Omega 3

From time to time I hear some talk radio personalities advertising for “Relief Factor,” an anti-inflammatory dietary supplement. Each “Relief Factor” packet contains 2 fish oil softgels and 2 capsules containing Epimedium (200 mg), Turmeric (667 mg), and Japanese Fleeceflower (70 mg).

The “Relief Factor” website suggests taking three packets per day to start and then reduce it to two per day. The 2 fish oil softgels together contain 1400 mg of fish oil that includes 900 mg of omega 3. That means that each individual softgel contains 700 mg fish oil and 450 mg omega 3 (2 softgels = one serving).

Now, if you take three packets per day of 2 fish oil softgels each, that amounts to 2700 mg of just omega 3 per day (as well as whatever else is in the fish oil). Yikes! that’s too damn much omega 3 per day!

We’re not talking about “3 grams of fish oil,” because oftentimes fish oil softgels (such as 1200 mg each) only contain 300-500 mg of omega 3, and the rest of the fish oil softgel contains omega 6 and other things. No, we’re talking nearly 3 grams of just omega 3!

I have touched on fish oil a bit here and will mention that again in my upcoming post on my medical ordeal, the post that’s almost finished.

So, there are two issues that I have learned about regarding omega 3. The first issue is that it could have a blood-thinning effect, and could interact with prescription blood-thinners. So, while the supplement makers don’t mention this, it is probably a good idea for fish oil (or otherwise omega 3-containing supplements) consumers to not take blood thinners. Or, if someone is taking a blood thinner for some reason (like coumadin, for example), then it would be a good idea to not take too much omega 3 or a supplement that is high in omega 3.

Now, that’s the first issue with omega 3. The second issue is that (and I may have mentioned this on this blog) it may not be a good idea to be taking fish oil or omega 3 supplements in the long term, and that just eating fish as a part of the diet would be healthier. I am going to mention that again in my upcoming post on my medical ordeal from the 2000s. Here is another article I found on that issue.

It is best to get dietary omega 3 from natural food sources, in my view, such as fish, krill, seeds and nuts. It can also be found in milk, chicken, beef and eggs. Because of my digestive issues, I have been relying on eggs for omega 3. But there are other foods to have that could have anti-inflammatory effects. It is also a good idea to avoid foods that have a pro-inflammatory effect, like foods containing corn oil.

But, as far as fish oil supplements such as “Relief Factor,” perhaps taking that when one has had an injury or to otherwise address some specific issue, temporarily, could be a good idea.

Soluble Fiber Good, Insoluble Fiber Not So Much

There is a somewhat recent post on fiber by Mark Sisson, who is known for his “primal blueprint.” It is quite informative. I’m glad that at some point he notes the difference between soluble fiber and insoluble fiber. Insoluble fiber is also referred to as “roughage” and doesn’t dissolve in water and isn’t digestible. If someone such as myself has issues in the colon then avoiding insoluble fiber is advised.

Insoluble fiber is found in many vegetables, fruits, nuts and grains.

Back in 2004 or so I was reading about fiber and how it could be helpful for someone with inflammatory bowel a.k.a. ulcerative colitis. But at that time I hadn’t learned enough about it. I was having pea soup for a while, but when I had another relapse of colitis in late 2004 I looked into these things further.

But it is okay for a sensitive colon to ingest soluble fiber, which does dissolve in water and is digestible. But not too much of it.

And even some forms of soluble fiber are still “harsh” and a bit difficult to digest, as I have found out. One example, in my experience, was pectin. The acidophilus pearls that I was having from 2005-2013 seemed to add pectin to their ingredients and I wasn’t aware of it until I then had a relapse in late 2012 the first one since 2005. In 2013 I switched to a different brand of acidophilus supplement.

Another harsh form of soluble fiber is fructooligosaccharide (FOS), which Ensure Plus had added and which seemed to give me a bit of trouble (when I was drinking Ensure, that is). Ensure removed the FOS at some point. I’ll bet people complained about it. One thing Ensure is good for is for people who have big issues in their digestive system and can’t eat a lot of food at that time, especially someone with ulcerative colitis.

But I had read that soluble fiber is good for the colon and actually aids the acidophilus probiotics to do what they’re supposed to do. So for several years I have been having a half-teaspoon of guar gum powder 3 times a day, mixed in with my apple juice or grape juice.

Could Nutritional Supplements Be Interfering With the Immune System?

I mentioned in this post in February that one part of the problem that I had with the magnesium supplement was a possible interaction with another supplement, L-theanine, which provides a “calming” effect.

In January 2017 I was under a lot of stress and so I took an L-theanine capsule (200 mg) one per day for about a month. I did gradually reduce it when stopping it by going to every other day and so on. But shortly after I stopped it I had a cold. The same thing happened a second time when I took the L-theanine again in June 2017 for about a month and stopped taking it, and had a cold shortly after that. So, I’m wondering hmm, maybe the L-theanine, which supposedly also has a reinforcing effect on the immune system (Chengjian Li, et al., 2016), gave my immune system a false reinforcement so that when stopping it, my immune system was then weaker than it was before starting the L-theanine?

So later in the year I took the L-theanine like just every other day maybe two or three times, and after that had a cold again. And earlier this past January 2018 I only took the L-theanine every other day like about two or three times, and the cold symptoms occurred again after that. It might have all been a coincidence. And in my earlier post I had thought that maybe it was because the L-theanine was interacting badly with my magnesium supplement. And, as I wrote in the previous post, I then learned that my symptoms, mainly headache (but nose running as well), were probably due to taking too high a dose of my magnesium supplement, which was only the 400 mg/day as recommended. Some things I read mentioned that too much magnesium could interfere with your immune system functioning. So I reduced the magnesium to a 200 mg caplet and a 1/2 of caplet later in day, and the headaches went away within a week after that, and after 3 weeks now I haven’t had any runny nose. However, if any of the problem was due to L-theanine, I haven’t taken that since January, and won’t take it again, because it’s too questionable.

And all that got me looking into these supplements that I take as added “anti-inflammatory” mainly for my ulcerative colitis or “inflammatory bowel” (that I mentioned here), which has been under control again since early 2013. From what I have learned, you have to be careful with these “anti-inflammatory-enhancing” supplements, because supposedly they interfere with your natural anti-inflammatory system. (Or do they?)

I’ve been taking the probiotic acidophilus pills since 2005, and also vitamins D, C, and E. The vitamin C experience I wrote about regarding my taking too much per day (up to 6000-7000 mg/day) and I gradually decreased it to 1250-1500 mg per day in 250 mg doses during the day (and followed up on that). I had been taking the vitamin D in the area of 3400 or 3800 i.u. per day, but I’ve started to reduce that now because apparently that is too high. And I take the “natural” vitamin E (d-alpha tocopherol) at 400 i.u. per day. I’ve also been taking quercetin approx. 200 mg three times per day for about 10 years, and now I’m not sure about that. The quercetin has been for over 10 years now, and I hope that hasn’t had too much of a negative effect, if any. That’s a bioflavonoid antioxidant found naturally in grapes, apples and onions, and supposedly has anti-inflammatory properties.

So, this whole thing with the supplements has been a continuing and frustrating learning experience. Because of my ulcerative colitis I can’t have most vegetables and fruits, which is where we naturally get our antioxidants for natural anti-inflammatory and immune system support. (Although I can have baked potato without skin at dinner, as well as carrot juice 3 times per day, concord grape juice and apple juice – thank goodness for those things!) This has been going on with me since mainly 1999, and I am in my mid-50s now.

And, by the way, the “doctors” I saw in those years mainly wanted to just give me the damn prescription anti-inflammatory drugs, but said nothing about the importance of nutrition. I’ll have something to say about my experience with the “MDs” from 1999 to 2008 in an upcoming post.