UPDATE: Because this post is kind of a long read, I decided to add a summary of the important points at the top, and then continue with the actual post below the summary.
Here is the summary first:
- It was an ordeal from 1999-2008. Diagnosis of ulcerative colitis (UC), or inflammatory bowel, with bleeding BMs.
- Primary doctor advised that I eat whole wheat and bran to gain weight. (But people with UC shouldn’t eat whole wheat and bran which are irritants to the colon.)
- Primary doctor had me have an upper GI series, in which the barium caused a return of pylorospasm (spastic pyloris) that caused further aggravation.
- Prescription anti-inflammatory Asacol caused swelling in legs, feet and ankles, could hardly walk.
- Switched to sulfasalazine. A colonoscopy doctor advised to increase sulfasalazine in 2001, and a different colonoscopy doctor advised in 2005 to increase it further. Based on an unusually high blood pressure reading at a physical, my research and conclusion were that the 2005-2006 increased sulfasalazine caused depletion of potassium which contributes to higher blood pressure. Reducing sulfasalazine resulted in lower, more normal blood pressure.
- 2007-08 and onward I emphasized nutritional medicine and supplements. Were issues with fish oil/omega 3, and drinking Ensure for a long period. The biggest help since 2005 in my experience has been the acidophilus probiotic supplement.
- 2008 colonoscopy the two GI doctors were “not sure” about “regenerative glands with neutrophils” and suggested another colonoscopy in just 6 months. My conclusion was that they were “FOS,” so I didn’t have that. Colonoscopies are very stressful! I had them in 2001, 2005, 2007, and 2008. There were polyps in 2001, but none in any of the subsequent colonoscopies. And I learned that “regenerative glands with neutrophils” meant that the colon tissue was healing after those initial years of inflammation.
- In this post I also mention some of the foods I have, some of which have anti-inflammatory properties.
Now, here is the actual post on my ordeal that went on for years:
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.