Does anyone know about the increased risk of cardiovascular disease and FAP? (also related to the question I asked about colectomies/j-pouches, enterolactone and bifidobacterium). However, this is more specific because of the FAP risk of adrenal carcinoma (benign) that can cause the excessive production of both cortisol and aldosterone, which elevates blood pressure.
Ross
As for the moment I received only one response (now, a few hours later, two) which, in the way it was phrased, I would consider it a bit sarcastic. Maybe "sarcastic" isn't the correct descriptor; cynical? The quotation marks around the word "proof" hint towards Chuck's tendency towards doubting the veracity of any possible publishings on the subject before those publishings appear infront of his eyes.
I've never heard of any correlation.........never read anything that showed this either. I'd be curious to see what "proof" there is of this.
The problem I've encountered with internet forums be it the J-Pouch, FAP/Gardners, Magnesium Deficiency, Adrenal Fatigue, Hypothyroidism, MTHFR etc, those most responsive tend towards falling into two groups: 1) the informed, concerned and in the groups to help orient other members. 2) the sarcastic, cynical and skeptical seeking a battle and the ability to feel better by stepping upon others... When the first response is the skeptical, a tone tends towards being set for the conversation. What's worse is that in J-Pouch.org, the FAPers are a signifant minority with the majority of the community being sufferers of Crohns and IBD/Colitis.
The "proof" I offer Chuck for validating my concern is from organizations that are pilars of cancer research and virtually indisputable. Understanding an emphasis on "Virtually" is very important when considering their political stances and their polital-economic alegiences that may limit their perspective and the research they support.
If you scroll down to the section of FAP And Adrenal Tumors you'll read this:
"...This is especially important since recent reports suggest that up to 20% of patients with adrenal incidentaloma (which means 1–3% of all FAP patients) have some form of subtle and subclinical hormonal dysfunction resulting in an increased risk of metabolic disorders and cardiovascular disease."
And then there is this publication by the American Cancer Society: http://www.cancer.org/acs/grou...ntent/003081-pdf.pdf
Although the general statistics say that FAPers are at a 1-3% risk for adrenocortical carcinoma, this book (click on the link):
claims that two large studies claim that the risk is between 7.4 and 13%... In my family, my younger sister fell into the "1-3%" who developed thyroid cancer. And my cousin and then my other cousin's daughter (a generation apart) fell into the "1-2%" who developed medulloblastoma (brain tumor); the 18-year-old daughter of my cousin was just stricken down a few days ago. So, for us, it is easy to worry about understatements of risks in the statistics.
And then there is this this from the Endocrine Society: http://press.endocrine.org/doi...10.1210/er.2013-1029
"the relation of adrenal tumors with FAP led to the discovery of the role of β-catenin signaling in adrenal tumors."
I guess I'll leave you with this. I imagine they are sufficient amount of scientific studies connecting FAP with the possibility of adrenocortical carcinoma to bring up the question of the risk of the production of excess cortisol or aldesterone leading to hypertension, hence cardiovascular disease. So, the question to the community of FAPers is if anyone has stumbled across studies focussing almost exclusively upon FAP and cardiovascular disease.
As you know, I can never "just leave it at that..." and I continued writing, leaving behind my reaction to his "tone" and continuing with my concern about understanding what may happen with us (me), our atypical genetics and other possibly related health issues; especially cardiovascular disease.
Since I haven't been writing much these days, you may not know that my concern about dying of FAP/Gardners related cancer disappeared with the major risk of sudden death caused by cardiovascular disease. However, in the 9 months since the heart attack on March 12th, I haven't rested from reading all there is to understand about cardiovascular disease, risk, prevention, intervention and exaggerations etc and have stumbled across a lot of very interesting information that may have brought me full circle back to questions related to FAP/Gardners/J-Pouch. For instance: J-Pouch restructuring of part of the small intestine, Vitamin D deficiency--hypertension, SIBO--TMAO--LDL cholesterol stickiness--Arterial plaquing, Lack of colon and potentially low levels of enterolactone and that relationship to increased risk of cardiovascular disease AND what led to this blog entry: FAP, Adrenocortical cancer and heightened production of cortisol or aldesterone leading to cardiovascular disease.
Truthfully, I can't imagine that those living within the FAP microcosm at such risk also living within a society or world at such publicized high risk of death caused by cardiovascular disease, reading the prior paragraph the FAPer/J-Poucher wouldn't have their interest peaked...
First you must read what is fascinating about Enterolactone, cancer (especially breast cancer) and cardiovascular disease. And then you must read the connection between SIBO and TMAO and how TMAO relates not only to our arteries but also to all forms of cancer. You may have read the argument against red meat causing heightened production of TMAO leading to cancer. However, it goes way beyond red meat consumption and cancer. Plus, the Paleos show studies proving that fish are the animals with the highest levels of TMAO precursors in their muscle. Supposedly (and strangely; although even my cardiologist mentioned this) the small intestine is the immunological center of the body. So, if you read about TMAO, you'll also read about SIBO as the main cause of TMAO (although normal-high levels of testosterone are protectors against the production of TMAO) and that J-Pouchers and those with only colectomies may have a tendency towards SIBO. The Paleo doctors/research scientists claim that the issue with TMAO is SIBO and urge that people consume probiotics especially in the form of fermented vegetables.
First you must read what is fascinating about Enterolactone, cancer (especially breast cancer) and cardiovascular disease. And then you must read the connection between SIBO and TMAO and how TMAO relates not only to our arteries but also to all forms of cancer. You may have read the argument against red meat causing heightened production of TMAO leading to cancer. However, it goes way beyond red meat consumption and cancer. Plus, the Paleos show studies proving that fish are the animals with the highest levels of TMAO precursors in their muscle. Supposedly (and strangely; although even my cardiologist mentioned this) the small intestine is the immunological center of the body. So, if you read about TMAO, you'll also read about SIBO as the main cause of TMAO (although normal-high levels of testosterone are protectors against the production of TMAO) and that J-Pouchers and those with only colectomies may have a tendency towards SIBO. The Paleo doctors/research scientists claim that the issue with TMAO is SIBO and urge that people consume probiotics especially in the form of fermented vegetables.
But back to the letter to J-Pouch FAPers:
As many of the studies mention, since the past two generations of FAPers have had prophylactic surgery, we are just entering a moment in history or analysis where FAPers aren't dying of cancer of the colon and now approaching middle age or passing through that period when we can see the prevalence of other diseases that may appear... For instance: my father died from cancer of the colon metastecized to the liver at the age of 34 (he was an eye surgeon). Due to his suddenly becoming ill, his older brother (the father and the grandfather of the two cousins who developed medullablastomas--brain tumors) was diagnosed with FAP and immediately had his colon and rectum removed. However, it turns out that my paternal grandfather (not of the FAP/APC line) died of a heart attack at the age of 62 and my father's brother also died of a heart attack at the age of 62--but directly related to his Diabetes I. Now, had my father lived into middle age, would he have been diagnosed with heart disease? As you know, speaking of my uncle, Diabetes doesn't strike everyone the same. Not all diabetics develop heart disease. So, we can't say that his was caused by diabetes. We can assume that it was not FAP related and possibly his father gave him gene mutations for heightened risk of heart disease...
I'm not diabetic. Unlike my younger sister, I didn't develop thyroid cancer. But, it seems that only female FAPers develop thyroid cancer. I have osteomas. No one else in my family has that... My male cousin (father of the 18-year-old with the medullablastoma) has horrible desmoid tumors that no one else suffers. My younger sister also developed rectal cancer at the age of 43. But the rest of us had J-pouch surgery years earlier than did she... I'm very health conscious and informed, proactive etc. But, at the age of 46 I had a heart attack, although my lipid profile was near perfect and I was exercising regularly (I was running between 30 and 40 miles [40 and 66kms] per week; at the moment I'm running 4 miles [6.5kms] 4 times per week, while rowing 1-2 days [30 minutes] per week).
When I was diagnosed with FAP at the age of 12 in 1981 and had the colectomy at Memorial Sloan Kettering Cancer Center in New York the following year, I was told that with the removal of my colon, the polyps in the rectum would disappear and we would be basically "free" the rest of our lives. When my younger sister developed thyroid cancer in 1996 and I did the research, the only medical research scientists connecting thyroid cancer with FAP was a group from New Zealand. However, the American Medical Association smashed their study as being too small, calling it inconclusive evidence. At that time, the medulloblastoma that killed my beautiful cousin at the age of 16 in 1978 was NOT considered an issue of FAP. However, if you go into the Cleveland Clinic website and any other dedicated to FAP/Gardners today, you'll find that both Thyroid cancer and brain tumors are part of the syndrome.
What if the parents of a 12-year-old carrier of the APC gene were told that their child would be at a lifetime risk of heart disease? Then maybe the child could be taught techniques for preventing or decreasing the risk of having a heart attack. One thing is having cardiovascular disease. Another thing is having a heart attack. And, contrary to popular belief, controlling saturated fat intake is NOT near the most important method for preventing heart attacks. There's a whole slew of other lifestyle factors and dietary considerations for decreasing arterial inflamation and plaquing etc... Although having a heart attack does not signify the end of one's life, it is the edge of an important precipice that we would be much advised to avoid nearing at all cost... Prevention is much more advisable than is intervention.
Are we as FAPers preventing adequately? Are we adequately informed? Is there enough research into the field? And if there was enough research and information out there, are we sufficiently proactive with our personal health and that of our children?
That's why I ask the questions and do the research.
And then Jan, who always responds scientifically to my postings and is a moderator and a retired nurse, responded:
I guess my thinking is that it is pretty much a moot point. The FAP associated risk with adrenal tumors is quite low, since they are found incidentally in the general population. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3147036/
Plus, only a percentage of those have an associated heart disease. I think you are extrapolating too far. In addition, having normal lipids and blood pressure does not guarantee avoidance of coronary heart disease or other causes of heart attack (such as arterial spasm). Those are simply factors that can be controlled. You cannot control your genetic makeup. Sure, you may have FAP genes, but you may also have heart disease genes. Heart disease is very widespread in the general population.
You are better off dealing with your state as it presents rather than trying to figure out how you got there. But, I can understand your curiosity and desire to unravel the mystery. Just don't make yourself crazy about it.
Jan 
My response may appear a bit harsh or intense. But, I'm hoping you'll understand my point. If this were an academic, religious or political debate, it wouldn't be void of harshness and intensity and in the end, if we are thoughtful and educated people we would understand that what is important is the information being shared and if it is helpful or destructive or possibly neutral. The problem with Jan's response is that it lends towards inactivety, complacency and the status quo. We must ask in who's best interest is addressing illness and disease with blinders limiting our vision... like carriage horses that pass through centers of major cities... I guess if you don't look around you, at the moment there is nothing at your sides that could possibly startle you... Until you are diagnosed and it's a bit too late... But what if it isn't?
And here's my response to Jan:
Hi Jan, nice to hear from you again.
In all that I've read about cardiovascular disease, especially what I'm currently reading in the British epidemiologist Dr. David Grimes' book "Vitamin D and Cholesterol; the importance of the sun" that addresses not only cardiovascular disease, but tuberculosis, hepatitis, diabetes and gastric ulcers, it is just as important to deal with the cause as it is with dealing with "the state as it presents itself"...
For instance, if the issue is SIBO causing high levels of TMAO combined with low levels of Testosterone (Testosterone turns off the FMO3 gene responsible for the production of TMAO), the logical response would be to both remove the SIBO and raise testosterone levels. And then we could see if the cardiovascular disease decrease or if the arterial plaquing stops. Sometimes the illness isn't just the current diagnosis, such as cardiovascular disease or diabetes II or kidney disease. Sometimes it is actually something else that wasn't diagnosed or attended towards. And, as you said, sometimes it is a bunch of factors.
As you may have read in my other posting, J-Pouch experts have made the correlation between J-Pouches and Vitamin D deficiency. But they don't understand the mechanism. Now, Vitamin D deficiency is widely connected to hypertension which is directly connected to cardiovascular disease. In my genetic testing I have one mutation of the VDR gene, otherwise known as Vitamin D Receptor...
I have 4 gene mutations related to glutathione deficiency also directly related to cholecystitis (that I had in 2006 and investigated how to avoid having my gallbladder removed by naturally removing the gallstones) and atherosclerosis.
For a 46-year-old male, my testosterone levels are that of a 75-year-old, meaning that they are very low. Originally, the medical scientists did not understand what came first--cardiovascular disease or testosterone deficiency. But what they did notice is the tendency of people who've had heart attacks having low levels of testosterone... I read about that in May. In November, I stumbled across a bunch of studies connecting testosterone with TMAO and cardiovascular disease. So, normal-high levels of testosterone are cardiovascular protective.
Also, in my blood testing over the past 2 years there is one nagging constant: Immunoglobin M deficiency (IgM). It never rises. So, I did a search for IgM deficiency and cardiovascular disease and was surprised/amazed to find that IgM is not only responsible for protecting us against Antigens but more importantly IgM is responsible for removing from the blood stream oxidized LDL cholesterol and apoptosized cells... So, maybe my LDL cholesterol level is normal. But, over the years, if my IgM isn't working adequately, then I am accumulating oxidized LDL cholesterol and what is considered the true "lipid" cause of cardiovascular disease.
Now, when you address cardiovascular disease as it presents itself, especially if you had a heart attack, you are addressing it with a Cardiologist. And when you mention SIBO to a cardiologist... If they know what it is and believe what you say, they say that's the realm of the gastroenterologists... If you mention Vitamin D deficiency, they mention a nutritionist. If you mention low levels of Testosterone, they mention an endocrinologist. If you mention IgM deficiency they mention an immunologist... Now, if you mention FAP/gardners do they mention a gastroenterologist or a geneticist?
What I'm saying is that addressing cardiovascular disease as it presents itself is done with a cardiologist. Ignoring the possible causes would be blatantly irresponsible.
As Dr. Robert La Porte, professor of epidemiology at the University of Pittsburgh says, "We need to examine and model the evolution of patterns of disease. We need to break away from our orientation towards single disease and begin to focus on the big picture."
If FAP places 7-13 percent of the FAP population at risk of adrenocortical carcinoma (which is actually very high) and even if a small percentage of those 7-13% experience heightened levels of cortisol or aldosterone, AND if those people also have genes for cardiovascular disease (although most people don't check their genes, so they don't know if their heart attack was genetical determined), it's still sufficient reason to address the concern.
How do you address that concern? With abdominal ultrasound to see if there are growths on the adrenal glands. If so, you must check aldesterone and cortisol levels. But, if no one is asking these questions, and making these statements, no one will decide, "Maybe I should have an ultrasound done of my kidneys!" Plus, as I've read today with these articals: most people discover adrenocarcinoma when they are having an ultrasound for something else, since the adrenocarcinoma normally is symptom free. If the person suffers hypertension without knowing it's cause, the cardiologist will prescribe anti-hypertensives without addressing the true problem. Maybe it is as simple a solution as laproscopic surgery for removing the benign tumor from the adrenal gland instead of having to take anti-hypertensives (that cause possibly unnecessary side effects and also have the tendency to stop functioning adequately later on) "For the rest of your life" as the cardiologists love to say.
It's much better to treat the disease instead of the symptoms. But, first you must understand the disease as it pertains to you. As for FAP/Gardners; it's a multifaceted syndrome also known to be an enigma in many ways. As you may have read in my earlier response, it "presents" in different forms with all members of the family... Why? Who knows? Maybe it never would have killed me through my colon. And maybe it will kill me through my heart. Maybe all of what I wrote above about the different possible factors are genetically independent; maybe they are interconnected. If you read about the APC gene, you will also read that the APC gene mutation is related to other gene mutations...
When did medical scientists suddenly start believing that the information at hand was all the information we need to know for addressing the related situations? When did they suddenly decide that there was no need for more questions and alternative perspectives and also continued challenging of the veracity of popular theories?
Who are we protecting when we decide that we don't have to continue asking questions and looking for more or better solutions? Certainly not the patient.
The J-Pouch forum is for J-Pouchers to obtain additional information related to their experiences with their body AND their experiences with their doctors. Many questions are not answered because as you know, there are many fewer explanations for what causes and how to "cure" a disease than there are questions.
FAP is hereditary. But, today 30% of FAPers are first timers. Sounds like an anomaly/paradox to me... That means for those FAPers, it wasn't hereditary. Maybe it was epigenetic...
Maybe my questions and statements and the scientific information I offer periodically will aid one of the FAPers who reads this... So, I guess it really isn't moot. Is it?
For instance; 2+ years ago I wrote about running and bleeding during or afterwards. It turns out that many J-Pouchers responded that they had to stop running due to excessive bleeding during or after. I discovered in Runners World Magazine something called intestinal ischemia that occurs with maybe 13% of marathoners... For the half marathon J-Pouchers, this may have helped them understand that maybe it had nothing to do with their J-Pouch per se... However, my bleeding stopped after greatly changing my diet. Not only that, I stopped having what so many J-Pouchers suffer: Pouchitis. Why? Could it be that many people with a J-Pouch or before having the surgery have problems with all forms of wheat and not just wheat gluten? Could it be a combination of wheat and other traits of the modern commercial food industry/diet? Could it be as simple as increasing lignans in our diet, especially from flax seeds?
Does anyone really want to remove their ailments naturally?
At the moment it means a greater sacrifice than they already are doing, AND it means that it isn't as simple as taking a pill or drinking metamucil... But, mabye in the long run they would be sacrificing much less...
Thanks for your response. Hopefully there will appear other types of strong opinions that help us expand our knowledge of the situations.
As for FAP associated risks; they are low for ALL other FAP related cancers after colon cancer. My younger sister developed Thyroid Cancer at the age of 26 (1-2% risk) and rectal cancer at the age of 43 (was considered low risk). My cousin died of a Medulloblastoma at the age of 16 (1-2% risk) and who would have been her niece was just rushed to the hospital for having a sudden medulloblastoma removed (she's 18-years-old). In 1996, the American Medical Association smashed the study that came out of New Zealand connecting FAP with Thyroid Cancer. Brain Cancer wasn't connected with FAP until the turn of the 21st century, even though my cousin died of it in 1978... FAPers aren't the general population. And as I've noticed during my lifetime living with this "disease", it's like living with a stalker hiding out there, visiting you every once in awhile and saying "if you don't give me $100,000 tomorrow, your daughter may not return from middle school or your wife may not return from work or the gym or from shopping sometime in the future..." Read about non-War Veteran PTSD and hypervigilance... Come to think of it, you could tell me to see a psychotherapist claiming that also my cardiovascular disease is psychological trauma related. My father died at the age of 34; I was 4.5-years-old. His sudden death "destroyed" our family. I had my colectomy and emergency return to Sloan Kettering at the age of 13... The heart attack appeared at the best time of my life, when I was "healthiest" and in an economic position for planning for a future with my wife in ways I never had dreamed of. And now, with the heart attack, those plans were shattered.
But, what gives me most comfort is finding all of this information that helps me understand the possibility that maybe not everything is inevitable... and if we understand the multifaceted causes of the individual's disease (since, when it comes down to it, there is only one disease and one person being treated. Although the statistics of humans as groups help us direct our attention for being able to incorporate possibilities and for removing them from the list with educated analysis or "guesses"), we can see if we can remove/alter variables one by one... instead of saying "this is what the doctors said and it's this and THAT'S IT... if it doesn't work, than I guess am F---ed. Dump all of your savings into THIS and CROSS YOUR FINGERS!"
But what if the doctors are looking through a bottle...? What if they haven't been well informed? What if their perspective and training only looks at 2 of the 240 possible causes of cardiovascular disease? What if there are many other options of possible cures but the investigations require heavy funding and most of the medical research is funded by pharmaceutical/medical technology companies not interested in non-chemical/non-surgical responses to illness/disease? What if the gastroenterologists were taught in medical colleges not funded by the farmaceutical industry and understood that gallstones can be removed with changes in diet without removing the gallbladder? What if they understood that Hiatal Hernia, cholecistitis (gallstones) and diverticulitis were directly related and that cholecistitis and atherosclerosis were also directly related (low glutathione)?
In 2006, had I had $2000 for removing my gallbladder, I would have followed my gastroenterologist's recommendation. However, considering that I didn't have that money, I decided to research alternatives. 9 years later I don't have cholecistitis. But I do have my gallbladder.
How are the gastroenterologists attending to pouchitis? Considering that I have never met a gastroenterologist that understands J-Pouches and FAP here in Mexico, I had to attend to my pouchitis alone... If I don't ask questions and read scientific literature along with a lot of alternative medicine and compare, I wouldn't have found the solution to what much modern medicine turns a blind eye...
Ross
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