Pico de Orizaba

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

Wednesday, December 12, 2012

J-Pouches, FAP/Gardner's Syndrome, Crohn's Disease; Letter to Will



Hey Will, I just stumbled across your website looking for more information about J-Pouch and B12 "absorption"... Actually, I injected myself (for the first time in my life) with B12 about an hour ago and am having difficulty walking:-) In any case, I really appreciated reading your statements and advice along with your candid comments about farting and shitting in your sleep. I'm glad you have a sense of humor and are able to share it with others. I don't know if your fiance is now your wife. She must be a wonderful person for living with your condition. But, based upon your photos and comments, I'm sure she must consider herself very fortunate... I had my J-Pouch surgery just after 9/11 in NYC and left for Mexico 1.3 years later... I met my wife Margarita 3 weeks into my journey here and we are married almost 9.5 years now. The eating and fiber issue is probably #1 on my list of complaints over the past 11 years. However, I am a great believer (just over the past 4 years) that our only true recourse is hightened dietary awareness. I know that's not really clear. I have Gardners Syndrome which falls under Familial Adenamous Polyposis that I inherited from my father, who died when I was 4-years-old. I grew up disregarding my health until my mid 30s, a few years after the J-Pouch surgery. And truthfully, I'm the last person you would expect as a semi-"expert" on nutrition. However, I've come to believe that, although FAP/Gardners Syndrome and J-Pouches carry certain risks and hightened uncertainty about the future, we are also forced into the opportunity towards being healthier than others, due to our dietary concerns and vigilance. I, for one, don't want thicker stools. They make it very frustrating in the bathroom. I'm left with the sensation that I must return in 5 minutes... At least with liquidy stools, I feel that I have successfully vacated, especially when the stool is followed by gas. For me, potatoes cause what I call cement..., which creates a sense of irritation. Natural Yogurt removed issues of what may have been Pouchitis. When it seems that something is inflamed or blocked up, apples push everything through. Which is an incredible finding, since I hated eating apples as a child into adulthood and I was sure that the fiber in apples would cause horrible blockage... I've read a lot on healing foods and swear by high vitamin C and anti-oxidant fruits and vegetables. Sadly, broccoli, spinach, kale, cauliflower and papaya cause obstructions for me if I eat them enthusiastically. However, I'm thinking that creating some sort of a smoothy with those vegetables or something like a creamed soup with them (without the cream) may be a suitable alternative. When I entered Mexico I was in-love with chile peppers, especially the dried ones, such as chipotle. To date, my favorite chile pepper (not dried) is Habanero. You have no idea how much dried chile sauces I consumed in my first few years here. I would eat it by the spoonful. I used to claim that the average Mexican couldn't tolerate the spicyness of my food, especially when a stranger would ask my wife or my brothers-in-law, "does the Gringo eat chile HA!HA!HA!" and I would jump in and say, "You wouldn't be able to tolerate my food I cook..." Thinking, "JERK". Today I avoid dried chiles because they create horrible inflamation of the stomach, intestine and J-Pouch. Today you will find my cooking with green chiles like Jalapeño and Serrano... Supposedly Serrano helps cure ulcers. Aside from imparting wonderful flavor to sauces, stews and ceviches, I haven't experienced problems on any end. I don't know if you've heard anything about Crohn's disease or J-Pouches connected with Gallstones. My gastroenterologist here in Guadalajara informed me that the two are directly connected. 7 years ago I was diagnosed with gallstones and had an inflamed gallbladder. The recommendation was for removing the gallbladder. But, 7 years ago we didn't have money for the surgery and I started investigating alternative healing... and that's where I am. I probably could write a ton more. But I will spare you. If you have any questions, feel free to write me. I'm also on facebook with my other email address: rossjgoldstein@gmail.com

ross

Oh, by the way, my #1 passion is international cuisine. You can imagine that restricting my diet was the last thing on my mind. The saddest thing for me moving from New York City to Mexico was the lack of international ingredients (and, if they exist here, they are 5 times more expensive than in NYC) for cooking Thai, Indian, and Chinese food... You mentioned alcohol intolerance. I've found that that intolerance has increased for me over the years, which is tragic, since Mexican beer is the best beer in the world. But, if I want horrible irritation problems or digestive restlessness; something like a nasal drip (you could call it an anal drip, although that would just be funny and not accurate), I would continue drinking beer occasionally, which I refrain from... But, thinking about wonderful Chinese cuisine... The main ingredients for Chinese cuisine are fermented in some form or another, meaning that they create similar conditions as does alcohol.. Indian cuisine causes other irritation/inflamation problems with all of the seeds, nuts and spices (but mainly spices). It's funny though, Indian cuisine (which I would put way ahead of French cuisine) is one of the oldest and most mastered cuisines of the world. They understand the consequences of high concentration of spices and fats that cause indigestion and encountered spices that calm the digestive tract, that they may place in the same dishes as the other problematic ingredients. Ginger, turmeric, yogurt and garlic tranquilize, disinflame, and sanitize/disinfect and purify the digestive tract... I don't believe in dried forms of any of these roots or herbs or whatever you call them... The #1 natural anti-inflamatory is Turmeric. It is also a blood thinner, which helps with issues of blood pressure etc... #2 anti-inflamatory is cabbage... Basil is a natural sterilizer/anti-bacterial. My next comment is irrelevent for you and I and contraversial for western doctors, but I must say it: Had we known about all of this before we had the surgeries, maybe we wouldn't have needed them... I wonder what effect a super conscientious diet high in natural yogurt (along with cabbage, beets, ginger, turmeric, basil and garlic) would have upon Crohn's disease and FAP. Throw out red meat (especially pork), all fermented products including aged cheeses, vinegar, refined grains like white flour and all oils with the exception of Canola and Olive Oil... Throw in a super increase in certain fish and a disregulation of citric fruits and berries (regardless of the cost). I can already hear myself and half the rest of the world screaming "AND WHERE DO I GET THE MONEY FOR THAT FISH AND THOSE OILS AND THOSE BERRIES ALONG WITH THE AVOCADOS!!!???" And I ask, "How much are you willing to pay in doctors, surgeries and medicine? Where does that money come from?" But, it's too late for this for you and I. But, maybe not for others... The problem is that denying Western Medicine in the Occidental world is like saying that you don't believe in God. "What if I am wrong like every warns? What if there is a Judgement Day and a Hell or a Purgatory? What if the only cure or prevention is what the doctor prescribes, but I ignored those doctors?" When I met with J-Pouch specialist #1 in the world just before 9/11 and asked him, "and what if we wait?", his response was very convincing: "Well, yes, you can wait. There is no guarrantee that the polyps in your rectum will become cancerous. HOWEVER... The second that one of those polyps changes... IT'S TOO LATE!" And, yes, I know what it means to carry the FAP/Gardner's Syndrome gene... And he had a point. However, what if our diets were different, much different well before the problems began? In college I was a vegetarian for 5 years, but for moral reasons. Certainly not for health reasons. I lived with a time bomb and knew that there was no solution for me... I was living without a colon for 8 years before I became vegetarian. I didn't care about myself probably because I believed that "God" didn't care about me and that's why I inhereted my disease. But, the truth is that, as long we live, we have a responsibility towards ourselves, and that responsibility is to live the best we can. I believe, if anyone understands this, you do, and that's why you can share with others, have dedicated so much energy to this blog and why you maintain a sense of humor. The situation is an incredible life challenge. Challenges lead to "intestinal fortitude", increased strength in character... Growing through this gives you the opportunity for sharing your strength and increased knowledge with others. I am 43-years-old. I don't believe I started understanding this until after I turned 37... Ross

3 comments:

Marsha said...

You injected B12! How did you know how much to inject and where to inject yourself? It doesn't make me happy that you are being your own doctor.....

Marsha said...

I am really not happy that you are playing doctor with yourself. How much did you give yourself and how did you know where to inject yourself.

Ross said...

I was given the prescription by the GastroEnterologist. The B12 is sold by dose. Each dose is part of a syringe. You inject yourself and you throw away the syringe... Here in Mexico the pharmacies have a clinic connected in some form or another. So, the Dr. gave me the prescription to have filled and that they would inject me at the pharmacy. So, I went to the pharmacy and they told me that the clinic was around the corner. However, no one was manning the clinic... On YouTube there are a sufficient amount of videos explaining how you inject yourself. I watched 3 and got up the nerve. No big deal.