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Crohn's Disease Forum » Ulcerative Colitis Forum » Anyone tried SCD diet???


 
02-10-2013, 03:29 AM   #31
FrancisK7
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so what's your point?
My point was in the phrase you quoted, ie. it doesn't have to be one or another, it can be both.

Accutane has been linked with the ability to induce genetic mutations due to its toxicity. Both my dermatologist and my GI pointed me to the literature and explained it was a plausible explanation. Four courts have judged there was enough scientific evidence to establish that link, in any case. I haven't read these judgement in full and I don't care to either. If you'd like the details, it's a good place to start.

You still haven't really said what your position was, though. I don't mind if we keep discussing this further so long the tone remains civilized. There is no need for condescension or sarcasm.

My initial suggestion to Jaffa remains: try it, you have nothing to lose. Worse thing that happens is it doesn't work, best case, you find some relief.
02-10-2013, 05:03 AM   #32
Ya noy
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My point was in the phrase you quoted, ie. it doesn't have to be one or another, it can be both.
I never said it had to be one or the other. Seriously, how do you even manage to make these things up?

Accutane has been linked with the ability to induce genetic mutations due to its toxicity. Both my dermatologist and my GI pointed me to the literature and explained it was a plausible explanation. Four courts have judged there was enough scientific evidence to establish that link, in any case. I haven't read these judgement in full and I don't care to either. If you'd like the details, it's a good place to start.
OMG! Are you really saying that you went to a doctor to get treated for acne, and as a side effect of the medication you were prescribed, you must now endure the extreme suffering and pain of UC, for the the rest of your entire life? That's even worse than I thought. How can you possibly be so nonchalant? That is freaking horrific!

I've already read the litigation, and OMG! Psychosis, suicide, IBD and even a single dose will cause severe birth defects. Big black box warnings, and patients required to sign agreements to use birth control while taking it. It's one of the most dangerous drugs there is. I can hardly believe it was ever allowed on the market. There's not even much room for doubt as to what caused your condition, and yet, you still trust these drug companies?

But hey! The awards being granted in the resulting lawsuits are ranging from $2 million to over $26 million, so I hope you have a lawyer. Any attorney will be more than happy to take you on contingency basis, meaning you pay them nothing. They only get paid if they win, receiving a percentage of the award.

You still haven't really said what your position was, though. I don't mind if we keep discussing this further so long the tone remains civilized. There is no need for condescension or sarcasm.
My position is that medication should be viewed as the last resort, not the first option. Natural remedies have their limitations, but the less you rely on modern medication, the more you reduce your risk of building up tolerances and developing severe adverse reactions. I won't even allow the dentist to give me novacaine to drill on my teeth. They rarely hit a nerve anyway.

Can't cure my husband's 3rd degree chemical burns though with herbs. The medication he was prescribed was discontinued, but the chemical reaction is continuing. He's being treated with injections, pills, and cortisteroid creams, along with the elimination diets--all prescribed by a number of physicians. We don't like it, but his choices are meds or death.

But my husband's condition is rare, and the medication that caused it was Lisinopril, which is used safely by hundreds of thousands of patients, and the risk of serious side effects is minimal.

But he's been able to control the colitis strictly with diet, and attributes that to the kefir, which really works for him. Of course it doesn't work for everyone, but nothing does that. Everyone's body chemistry is different, and sometimes may require a little experimentation, to figure out what works for you.

Oh, if you don't have an attorney, please get one right now. Accutane's been recalled and taken off the market, and the time period for filing your personal injury suit may soon be limited. I don't want to scare you but there have been additional side effects that you may yet develop, which could disable you further, and effect your ability to earn a living. So you really need to do it regardless of whether you want to or not. The case against Accutane is so strong, lawyers will stand in line to take you on as a client for free ( contingency basis.).

Last edited by Ya noy; 02-10-2013 at 05:22 AM.
02-10-2013, 09:53 AM   #33
FrancisK7
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OMG! Are you really saying that you went to a doctor to get treated for acne, and as a side effect of the medication you were prescribed, you must now endure the extreme suffering and pain of UC, for the the rest of your entire life? That's even worse than I thought. How can you possibly be so nonchalant? That is freaking horrific!
Well, there's no way to know for sure it was Accutane, but the timing fits and there's enough evidence to support that theory according to these courts. I underwent two Accutane treatments. One as a teenager and one as an adult. I was never told I could end up with UC. Which is why Roche (the pharma behind accutane) will pay through the nose for it. I was explained all the other risks. Unlike most people, I had almost no side effects while taking it, and it was very effective.

But if I am going to be honest, if my dermatologist had said "you have a 1% chance of ending up with a very rare, painful, incurable debilitating disease" I would probably have said "give it to me anyway". The acne problem was extremely severe, and the usual treatments (face creams, antibiotics, etc.) were ineffective. It affected my daily life so dramatically that I would have taken the 1% chance. My choice at the time was something like a 95% chance the acne will resorb itself versus 1% chance of permanent damage. I'd have weighted the pros versus the cons and went for it anyway.

I think you interpret my passivity as nonchalence, but it is not. Accutane could be responsible. Do I think Roche should be held accountable for their drug, a drug that has generated BILLIONS in profits? Yes, I think they should be.

However, it doesn't mean that I want to personally lead a crusade against them and dedicate the next years of my life hating Roche for inflicting me with this disease. What will it change? I'm stuck with UC now. The pancolitis is there, it's flaring, I had been in pain for months and months.
Today, I am happy to be pain free. I'm happy I can live again. I have all my life in front of me, I won't spend the rest of it hating pharmaceuticals. It won't change my situation and it won't bring more quality of life for me.

I'm still thankful for things like ibuprofene (well, I was), paracetamol (tylenol) and antibiotics. I'm thankful chemotherapy existed or my father would not have survived his colorectal cancer. I'm thankful morphine exists so he didn't have to suffer after his surgery, and I'm thankful for vicodin too so he could go home without going blue from the fear that pain might come back to visit him.

Don't forget that all of us on these boards have drew the proverbial short straw. IBD are no longer orphan diseases but they are still pretty rare. We're the result of mathematical probabilities hitting us in the ass. Millions of people took Accutane without any repercussions. I'm part of the unlucky 1% who was affected. It sucks, life can be a PITA sometimes, but it has to go on.

If your position is that drugs should be a last resort instead of a first approach, I think it's a perfectly valid point of view. I don't agree with it, but I certainly respect it. And I also understand why you despise pharmas like you do. If my spouse had had an allergic reaction that caused 2nd/3rd degree burns all over his body as a result of taking a pill, I'd be angry too.

I admire your passion. Your husband is very lucky to have a spouse so determined and dedicated to his condition. Very lucky indeed. I hope you remind him often
02-10-2013, 11:01 AM   #34
Beach
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I've seen others on the board mentioning a belief that taking Accutane could be behind their developing an IBD.

It reminds me of something people that eat a paleo diet often mention, their acne goes away. Their skin becomes nice and clear on the diet. Imagine the same happens with the similar SCD diet.

I've seen one of the more popular paleo researchers, Dr. Cordain, even wrote a book about controlling acne with diet.

"The Dietary Cure for Acne"

http://www.amazon.com/Dietary-Cure-P...ywords=cordain
02-10-2013, 12:43 PM   #35
FrancisK7
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I've seen one of the more popular paleo researchers, Dr. Cordain, even wrote a book about controlling acne with diet.
There are many forms of acne, each with a different physiopathology. Accutane is only effective against three our four of these forms. Some forms of acne are milder and will respond well to changes in diet or a simple topical cream. Others are more resilient. I had acne for five years before my dermatologist finally suggested isotretinoin, so we had tried everything. About 20-30% of Accutane patients have a relapse 5 to 6 years after their first treatment stopped. My dermatologist said it wasn't uncommon, so I went through another six months course. Three months in, my GI issues started, and the rest is history.

Four courts in the US have judged there was sufficient evidence to establish a link between accutane and the onset of an IBD. I haven't see that evidence, but considering how extremely toxic it is (in the US, there are some states that force you to sign a contract which prohibits you from having unprotected sex to make sure you don't conceive a baby while on the drug), I'm not surprised at all.

In any case, this is truly off-topic and completely unrelated to the OP's question, so my apologies for diverting your thread.

If you do try the diet Jaffa, if you can, let us know how you are doing
02-10-2013, 01:38 PM   #36
Ya noy
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I don't think you understand. You don't have to lead any crusade or spend any time outside of securing counsel to handle your claim, and settle it outside of court for you. Or you can become part of the "mass tort" litigation currently in the court. At most, you have to provide your medical history, and possibly a deposition. Outside of court, you probably won't receive as large a settlement, but your participation will be minimal and you don't have to hate anyone.

You will never have to see the inside of a courtroom if you don't want to, or spend more than a few hours of your life either. The vast overwhelming majority of these cases are settled via private agreements, and rarely are ever taken to court. The cost of settling is almost always far less.

If your dermatologist had been advised of the risks, he might not have even recommended it, or advised against it. And even though you feel you would have taken it anyway, you don't know that for an absolute fact, because you were never advised of the risks, and provided with the opportunity to make an informed decision.

At one point, I not only considered LASIK surgery for my eyes, I even put away money in my medical plan at work for it. But once I had the money saved, I went into to talk to the doctor, who explained that yes, I probably would no longer need contacts or glasses to drive, but in years to come, it very likely could make my up close vision worse. Most of my work is done on a computer, and the ability to see up close is far more important. That discussion changed my mind. Glad it did because I know more than a few who had the surgery, and are now having difficulties reading, even with reading glasses.

So you don't really know what you might have done. You're also looking at this all wrong.

One of my relatives developed lung disease from his job as a sand blaster, because he refused to wear the breathing apparatus required by law, and openly admitted it too. Regardless, he won his case against his employer because the court determined that it was his employer's responsibility to either make him wear that breathing apparatus, and when he refused, should have fired him rather than allow him to perform his job without it. So you need to stop seeing this as "your decision, your fault."

What would it change? An appropriate settlement would change your ability to seek out and pay for private specialists, obtain treatments that you might not be able to obtain through the socialized medical system, and even possibly to obtain specialized equipment that would enable you to work from home, or even start your business. You may be in remission right now, but how long it will last is uncertain. A settlement could change all kinds of things about your situation.

FYI, Accutane lawsuits now number in the thousands, the estimated percentage of those afflicted are far higher than 1%, and that it causes permanent gastrointestinal damage has already been established. There are law firms all over the Internet looking for you.

On a long-term basis, Tylenol will destroy your liver. Doctors are no longer prescribing antibiotics as often because overprescribing these drugs in the past is now being attributed to the creation of "superbugs" which no longer respond to penicillin, and they are now forced to resort to antibiotics which are far more powerful, dangerous, and even deadly. Chemo is no longer used that often following surgery because more patients were dying from chemo than the cancer. My dad had colon cancer, no chemo, and after surgery, was kayaking within the month. Morphine and Vicodin? Do you have any idea how many people die from accidental overdoses? They make people so groggy, they can't remember how many pills they took. That's aside from interactions with other drugs, mistakes made in filling prescriptions, and of course the danger of addiction, and they only work so long before the body builds up tolerances, rendering them ineffective. Yes, I'm in favor of legalizing MM. Not only is it a more natural and safer pain remedy, but more effective for long-term use, no pharmaceutical alteration required.

With prescription medications ranked between the 4th to 6th leading cause of death, only reporting to meds as a last option doesn't mean I hate pharmaceuticals. It means I value my life.

I don't just blindly trust anyone. Why would pharaceutical companies be any different?
02-10-2013, 01:49 PM   #37
FrancisK7
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I think your point is that every drug has pros and cons and that whether we choose to use these drugs or not is our own decision to make. Hopefully it will be an informed decision.

People die of overdose everyday. People die in car crashes, plane crashes. Everytime you fly somewhere, you take a risk. There's an infinismal change that the plane will crash, but in most cases, people think it's worth the risk to save all these hours of traveling it would otherwise take by train or by car.

Which treatment option people chooses is exactly like that. Drugs have the power to save lives, they can also end them, unfortunately. Perhaps in a few hundred years, if we haven't destroyed ourselves by then, we'll have drugs that are safe for everyone. We're not there yet, and I don't take the world could do without them either. We can however minimize damage by educating people on their choice so they can make the one that fits their needs and/or expectations
02-10-2013, 09:29 PM   #38
Ya noy
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I'm kind of looking forward to the day when we neither need or have any use for meds. and I like growing and preserving our own food, and cooking from scratch. It's not just healthier, but tastes better too.

Flying is far less risky. There are roughly 35,000 auto deaths per year vs 200 plane deaths.
Accidental death from drug overdose alone, now exceeds the number of deaths from auto accidents, while over 2.2 million are hospitalized per year from adverse drug reactions, and over 2 million a year contract infections from hospitals, while 90,000 die from them. In the year 2000, JAMA published an article with statistics showing over 250,000 deaths from iatrogenic causes, Defined as "induced by a physician's manner, activity or therapy," making doctors the 3rd leading cause of death, right after heart disease and cancer.
http://www.joyfulaging.com/iatrogenic.htm

Statistically, your chances of dying in a plane, car, or drug overdose combined, are far lower than your chances of dying from the treatment prescribed by your doctor.

The Paleo, SCD, GAPs and makers diets aren't all that much different. On occasional, I still crave strange foods, like corn dogs and diet sodas, but occasional lapses don't really do much, if any, harm.

But we only started getting into natural remedies only after tradition meds. failed. I originally suffered from severe allergies, that got worse, and medications either didn't work, or made me too tired to do my job. Nothing really worked on my husband's colitis, until he tried kefir, which was like a miracle cure. Maybe he was just lacking in a specific enzyme or probiotic strain, who knows?

I even used megadoses of vitamin C injections and raw liver to cure my cat of FIP (Feline infectious Peritonitis), but only because my vet told me it was 100% fatal, there was no treatment, no hope. It was also over 10 years ago, and my cat's still healthy and alive.

There are researchers working on a cure for FIP, and feel they've made great strides because they've managed to keep 1 whole cat alive now for 26 months. I've written them several times, enclosing copies of my cat's lab work, along with her healthy kitty pics, but still haven't received a response. No money in vitamin C, but in fairness, it doesn't work that often. I knew it cured a few other cats, only a few. Regardless, when your choices are either death or giving vitamin C a shot, the choice is a "no brainer."

Many who turn to supplements, diets, and other alternatives, only do so after having failed most traditional medical treatments and medications. There's not always as much choice as you may think.

If you don't visit other sections and weren't aware, we just did this debate with herbal suppliments, recently on this thread: http://www.crohnsforum.com/showthread.php?t=42931

Last edited by Ya noy; 02-10-2013 at 10:00 PM.
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