Pico de Orizaba

Pico de Orizaba
Taken from Huatusco, Veracruz, the closest town to Margarita's family's ranch.

Sunday, December 7, 2014

Turning "things" on their heads for a better understanding; part III of a Letter to the J-Pouch Community on improving "the Experience"..

Note: This is a response to a response to what I wrote on the J-Pouch group.  My statements are responses to statements by the other person, such as my statement about the anus...  The person towards whom I'm responding is also a J-Poucher and is a registered nurse.  Her comments are very interesting and informative.  I don't share her comments for different reasons. If you are interested in what preceded my response regarding any of my statements, I will be more than happy to share those ideas with you.

I've also read that epithelial cells or the lining of different parts of the digestive tract can become similar to other parts... But, what I was reading was not positive, since lets say the stomach lining became similar to that of the colon before the person developed stomach cancer there... No, I'm not thinking that what you said is bad. Just that, yes, it may be possible that the digestive tract can evolve to take on functions of other parts... I've been curious if the J-Pouch absorbs the B vitamins and Vitamin C, since it's still alive and was part of the Ileum. Most of our B vitamins and Vitamin C are absorbed in the Ileum. I would also like to know just how much of the Ileum is used, since some people believe having the J-Pouch surgery causes distinct Vitamin deficiencies... I also wonder why the anus must be smaller and less flexible after the J-Pouch surgery. Is it intentionally minimized due to the concern that the J-Pouch creates increased diarrhea? I lived without a large intestine and with a rectum from 1983 until 2001 when I had my rectum removed. Living without a colon was a bathroom and diet issue, but only minimal. In fact, I don't remember such issues now living with the J-Pouch, which created such a difficult difference. Who knows? Maybe the rectum also absorbed excess fluids... Although I thought that was the responsibility of the large intestine.


I'm very familiar with scar tissue... A month after having my colectomy in 1983, I was rushed to Sloan Kettering since my scar tissue was strangling my small intestine. The doctors said that had they not opened me up again and removed the scar tissue, I would have died in 6 days. Truthfully, the second surgery was much more extensive than the first one. When you look at my radiology photos of my lower abdomine, the pelvic region, it looks as if there is the top half of a small basketball in my gut... What it is is the scar tissue that filled the area where once was my rectum and possibly large intestine... It's like dark cloud coverage or as if I had swallowed a basketball...


But I'm an FAP/Gardner's person with an 11 year history of pouchitis. And it seems that removing the wheat, vegetable oils and most of the refined carbs, I've removed the issue which, with all of my reading and investigations, points to issues of inflamation.


My contention with medicine, science, doctors, and people who complain about weight issues or issues with discomfort etc is that it seems that no one is truly looking at the problem. And I believe it is intentional, for many different reasons, which I won't go into, since it deals with social-psychology or psychology alone, politics and economics... My concern is that if one does not isolate things, they will never truly know if it was or was not due to... The studies connect heart disease with "sugar", cancer with "sugar"... but the "authorities" are saying FAT. Fat doesn't cause inflamation... Excess sugar in the blood does... Did I mention the connection between Diabetes and Heart Disease and Diabetes with Breast Cancer an Diabetes with Alzheimers Disease? I'm sure I did. What do all of these diseases have in common? Lack of control of insulin or too much glucose in the blood stream. For me, it seems simple, you change the diet towards glucose attached to fiber (removing the refined carbs) and watch and wait. And, maybe you'll also find that you have a better experience with your digestive system... Did you know that before the 20th century most non-European, non middle-class communities were free of chronic disease and obesity? Until the past 40 years chronic disease such as heart disease, Cancer, Diabetes, and Alzheimers were consider "diseases of affluence". The communities without access to refined carbohydrates, such as white rice, wheat flour and table sugar didn't experience those diseases, nor did they experience hypertension, cavities, gastric ulcers, gastritis or colitis... This is why I "harp" on the possibility of changing the diet so that we can eat fresh fruits and fresh and cooked vegetables for their nutrients without worrying about diarrhea, constipation/blockages and Pouchitis.


I live in Mexico coming on 12 years and don't have the economy or time for flying to the U.S. for seeking FAP/Gardners or J-Pouch specialists. Here in Mexico no one truly knows any of these issues. Since I last became horribly ill in 2006, I've been basically forced to investigate how diet causes my experiences or relieves those experiences. I was diagnosed with gastritis that made me look pregnant, two stomach ulcers, duodenitis, a hyper inflamed gall bladder full of gallstones (an issue with Gardners), hiatal hernia, hypertension, high triglycerides and high cholesterol, among issues of acid reflux, diarrhea, constant blockages and pouchitis. The doctors suggested I have my gallbladder removed. But I didn't have the money. Instead, I started researching...


Two years ago, I visited with a GastroEnterologist who had met my surgeon in Chicago and claimed he understood the J-Pouch and FAP/Gardners. I was complaining of discomforts on different sides of my abdomin and visited him for an Upper Endoscopy. But, he claimed that I didn't need one (with Gardners, the standard practice is every 2 years, since we can develop cancer of the Duodenum and Stomach Cancer, along with Pancreatic Cancer, Adrenal Cancer, Cancer of the Bile Duct and Gallbladder Cancer). Although I complained of discomforts and that I had gallstones and stomach ulcers, he had no interest in giving me an UpperEndoscopy or ordering an Ultrasound... Instead, he gave me a prescription for B12 injections because he claimed that with a J-Pouch I don't absorb the B vitamins... At the same time I was experiencing increasing muscle fatigue/pain while running. We were in the end of November/beginning of December. Inspired by what he mentioned about the Ileum and Vitamins B, I started investigating what is absorbed where in the digestive tract and how that may affect us... What vitamin deficiencies could cause muscle fatigue... And I stumbled across Vitamin D deficiency, Potassium deficiency etc... I immediately went to the nearest clinic and ordered various blood tests and an ultrasound. Would you believe that the ultrasound disclosed that I had removed my gallstones without surgery and by a dietary home remedy? My potassium came back normal. But, my Vitamin D was low... The vitamin D deficiency made it virtually impossible for me to run for another 1.3 years.


During the two years between the visit with that GastroEnterologist and the one who just did the Upper Endoscopy and order the x-rays of my digestive tract, I developed other concerns that appeared as Hypothyroidism (thyroid cancer is prevalent within Gardners; my younger sister developed it at the age of 26), the inability to lose weight with regular exercise although I controlled my fat, dairy and meat intake (I've never had a sweet tooth or been a soda drinker), what seems like peripheral neuropathy from my right shoulder to my right fingers (like Carpal Tunnel Syndrome, I blamed on my baking endeavor for 4 years between 2003-2007), failing eyesight (although undiagnosable) and memory problems. I went back to the drawing board, returned to my readings on hypothyroidism and was surprised to see all of the above listed below the disease... and immediately visited with an Endocrinologist and had my thyroids tested... It was clear that he didn't believe my problem was hypothyroidism. He was focussing much on my weight (which can have so much to do with hypothyroidism) and my blood pressure (which can have so much to do with a vitamin D deficiency) and suggested a very low calorie diet. Fortunately, at the same time I came across the idea that calories have nothing to do with obesity, but the amount of refined carbs, blood-insulin levels and inflamation (that obesity causes inflamation also and causes decreased energy and not the other way around) and designed my very own diet. The thyroid tests came back normal and I had dropped around 10 pounds by the time we met again a month later... The endocrinologist asked me how I took to his diet and I responded, "I put it aside and designed my own" and explained what it intailed... And this is where my original piece begins...


But Rachel and others who have gotten this far... when I designed my new eating style (I don't like the word "diet" since diet is seen as temporary or a fad meant strictly for decreasing weight), I was NOT thinking about the J-Pouch or Gardners etc... I had come to believe that the diarrhea/blockage/Pouchitis/sleep disturbances issues were just a fact of my life with the J-Pouch; a trade-off or a sacrifice of comfort (and certain aspects of dignity) for preventing cancer and almost immediate mortality in exchange for living another 13 years; I've outlived my father 11 years now. I had no idea that I would remove most of the other issues concerning us the J-Pouchers regarding diet of health conducting foods much higher in dietary fiber... And that's why I decided to share with everyone... because I believe that it's not enough having the information and the related experience for myself. But, what I am certain of listening to so many J-Pouchers' concerns, "problems" and histories with the so-called expert medical community specializing in J-Pouches and Gastro-Intestinal diseases and reading the incredibly sparce and limited scientific literature on J-Pouches and Gardners Syndrome etc. is that what I've stumbled across most J-Pouchers are unaware of...


About comparing our small bowels with those of normal people's... I can't compare my body with the 3 other family members of my generation who inherited FAP/Gardners... Everyone's gene or allele expressed itself differently. I've never had cancer. My younger sister developed thyroid cancer although her FAP presented with much fewer polyps than mine and hers went away after the colectomy. Now she developed rectal cancer at the age of 43 (I had mine removed at the age of 32) and has a J-Pouch since March... She's also a refined carb addict/sweet tooth... and has a tolerance to alcohol I never had. One cousin has repeated surgeries for removing desmoid tumors. No one else has them. I have osteomas. No one else has them... My other cousin died of Brain Cancer at the age of 16...


I've read extensively about Celiac Disease, Gluten Intolerance, Wheat Alergies, issues with FODMAPs and Irritable Bowel Syndrome... "Discovered" the connection between wheat and Lymphoma... My landwomen's (two sisters) older brother suddenly developed lymphoma, destroying his jaw and one of his legs within two months. He's on chemotherapy for two years now. I asked one of the women if anyone of their family members had celiac-like issues. "NO"... Then I asked if her older brother ate much bread (I knew that the whole family drank much Coca Cola products). She responded, "AND HOW! If a normal person eats 1 baghette, he eats 3! If there isn't any in the house, he sends someone out to the store..." I asked her if his doctors checked his small intestine. She said yes and that there was nothing wrong with it... Two months later I mentioned this statement to her older sister who was much closer to their brother. I said, "I'm surprised that his doctors discovered his small intestine totally normal, considering what I've read..." and she exclaimed, "Are you kidding! The reason why they haven't removed him from chemo is because they discovered tumors in his small intestine... they keep coming back." And I asked, "and his doctors haven't mentioned anything about sugar and wheat products?" NOPE. They didn't know about it... although they are oncologists specializing in Lymphoma. Check any medical center/medical school website in the U.S. for Lymphoma and you will find a restriction against sugars and wheat products...


But what does this have to do with US and Them? And who is normal and who isn't... How do you know who is normal? And how do you know that most people aren't affected in different ways by the same thing?


But for one reason or another certain information that may aid many people (in different ways for different reasons) is not circulating seriously in the "American" medical and scientific communities... meaning that it doesn't filter down to us as patients...

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