In the process of starting a blog for a Paleo grocery shopping and menu design consulting small business, I began writing an entry about who I am and what my experience has been. It made me reflect on several things I really haven't thought about in a long time.
When I was a freshman in college, I was eating a horrid diet to "get in shape" for volleyball. I kept a food log obviously, as I became OCD about counting calories and mitigating fat intake. At 5'5 I weighed >110. My daily meals consisted of oatmeal, Kashi cereal, 100 calorie english muffins, peanut butter, and an assortment of Splenda based products. Writing this literally makes me want to go back in time and strangle myself.
About 7 months into this diet I developed a fistula, which is an infection in your intestine that tunnels out to your skin. It is the most horribly painful thing I have ever experienced, and I had it for over a year.
It was when I went to see a doctor about the fistula that I underwent exams that found evidence of Crohn's in my small intestine. The doctors said that I must just have "the fistula version" of the disease, and that unless I went on medication I would just keep getting more and more of them.
So they put me on 6-MP, until it gave me pancreatitis. Then Remicaid, until I went into anaphylactic shock during an infusion. Then I went on Humira, until my stomach muscle was paralyzed and my liver counts were out of control.
They told me not to have surgery to close the fistula because the infection was being fed by the disease and it wouldn't close, just tunnel back through time after time.
I was in too much pain to move, sleep, or think. There was such horrific stabbing all over my body that all I could do was stand in the shower with hot water running over me and cry. Every breath I took was like an onslaught of needles. The doctors just kept running more tests, finding nothing wrong, and sending me to another specialist.
Finally, after spending 5 days in the hospital and the nurses telling my mother I just had depression and probably hypochondria, she told them to f*ck off and took me home and off of the Humira. They told her that my Crohn's would rage out of control and I would just deteriorate. She said she'd wasted enough time listening to their advice and was done with it.
That's when we went to one of her college roommate's houses who had two daughters with Crohn's who followed the Specific Carbohydrate Diet (similar to Paleo, a bit outdated). I continued to get better and better. Fast forward to four years later with ZERO medicine, no symptoms of Crohn's OR gastroparesis, and a very, very happy life.
At what point are the GI's and nutritionists and liver specialists and every other specialized autoimmune doctor criminally negligent? Throughout this entire experience I had the best doctors at Massachusetts General Hospital telling me that my diet of oatmeal, bananas, rice, and white toast was OPTIMAL, that food was not the issue. My body had a problem that needed pharmaceutical fixing.
The fistula was superficial and after suffering with it for a year it closed immediately after the surgery all of the doctors told me would never work. I've never had another one, and I never will. I had a family predisposition to intestinal illness and a sh!t diet that triggered an autoimmune response. I could not even begin to quantify the amount of suffering I endured because of the medicines these people put me on, which padded their own wallets. Humira? $5,000 a bi-weekly injection. Remicaid? $10,000 an infusion.
Paleosphere, how do we stick it to Big Pharma? How do we find the people who are suffering like I was before they fall into the medical industry trap?
When my doctors gave up on me, and told my companion I'd be dead within 2 years, that's when I -really- started to live. See, I got -angry-. I'll be dognagged if anyone is going to tell ME when I'm going to die, and ferskiddled if I'm gonna die on THEIR schedule! I abandoned the failed information of the past, and searched for new tools to thwart their predictions.
12 years later, here I am -- I still have a long way to go, and I've made more than my share of mistakes on the journey... but I am alive -and- mobile (and mobility was something I'd already lost on standard medical care)... AND I talk about it.
my first thought. Wow! my second thought.Join the club! My suffering was less intense, but lasted thirty years. I have 12 doctors , who I could sue for malpractice. Many who I could hold criminally accountable if the system wasn't so protective of the medical profession. They had trials of Nazis after WWII at Nuremburg. What is the distinction between Auschwitz guards and MD.s..The color of the their uniforms? They both drive Merccedes!.. More hyperbole.... The typical MD is like Pope Pious XII who never stood up to Hilter during the war. They apply bandaids to the patients,and charge insurance for brain surgery. (no offense to the Quilt, I just picked the priciest specialist!) The bandaids aren't even sterile sometimes! They know what they do (prescribe poisons)) doesn't work, but unlike Harris/Quilt they don't question the mandates of Big Pharma, while Big Agriculture bribes govt. officials. What to do about it? Live your life one bite of grass fed ruminant at a time!, and weep for the rest of humanity..........And weep for joy that we've found this" D-day" quality nutrition/lifestyle.
I feel for you and the many others that have been negatively affected by the newer Big Pharma meds. I just finished my degree in pharmacology and have come to realise the glory days of easily made simple and effective drugs are pretty much over. The new drugs such as the one's you took have many and far reaching reactions that are possibly very strong and often little understood. I wont go as far to say as avoid them at all costs just that be aware than Big Pharma is looking after themselves and your health is secondary.
Paleo works due to the acknowledgement that the human machine is far to complex to control. The ability to control the immune system via pharmacology is currently a myth.
how do we stick it to 'em ? buy less medicine's
Thank you for sharing your story of perseverance and healing. I too went through a similar experience with diverticulitis (lost 4" of my sigmoid colon) and a diagnosis of bowel wall thickening/crohn's. Despite numerous doctor's, I was never provided any nutritional advice except "eat whatever you want." The medications that were prescribed (numerous antibiotics/anti inflammatories) only seemed to make me feel worse - especially with an eat whatever you want philosophy. Needless to say, I have a healthy mistrust of western medicine and big pharma. Thankfully, I found the SCD/GAPS diet and paleo lifestyle as my health is improving. I wish you much success with your blog and menu design consulting.
Great testimony to all the people who are struggling right now with health problems. I've struggled with similar problems that you've had for a long time and gone through hell just like you, including going to countless doctors only to find out I knew more about the disease than they did, they just knew what drugs to give out. I think you could make the argument that some are criminally negligent, the ones who know the truth but continue to profit off of the system and their patients. But the reality is most don't even know half of what the average person on paleohacks knows, and that is sad indeed. Then there's the grey area of those doctors who don't know the truth about nutrition and health but don't try to find it either, even when one patient after another tells them about it and their treatments continue to fail. This isn't technically criminally negligent, but it sure is negligent, and that's a crime in its own way. Big Pharma on the other hand, I'll just say most of them belong in jail and leave it at that. To answer your question about how to alert the people who have health problems before they fall into the vicious cycle of being given drugs that then cause more problems that require more drugs: We have to change the system from the inside out. It's simply too powerful and there are too many entrenched interests to take down the whole system and build a new one from the ground up. One way to do this is to start reaching out to leaders of medical schools to start teaching medical students proper nutrition. Right now most med schools offer little to no nutrition classes for medical students, I know because I have friends in medical school who know nothing about it. We should get experts within the paleo community to teach a nutrition class from the paleo perspective, but since this would probably be too much for them since they frown upon nutrition, start off with a biochemistry class taught from an evolutionary/paleo perspective. The embracing of alternative medicine is already starting at a few med schools, we just have to expand it dramatically http://www.usnews.com/education/best-graduate-schools/articles/2011/04/12/medical-schools-embrace-alternative-medicine?PageNr=2.
Another thing we can do, at least in the US, is use our power as citizens to change laws and raise awareness of the harm drugs are causing to so many people. We also need to lead a movement to get rid of the FDA completely and replace it with a system that evaluates drugs independently and without taking money from the drug companies (much of the FDA's budget comes from the drug companies they're supposed to regulate). This would lead to less harmful drugs on the market. Also, if conventional medical schools aren't willing to change, we need to expand the movement to legalize naturopathic doctors (I believe they can have their license in 16 states so far) and not only that, to allow them to be covered by insurance plans. Finally, we absolutely must use media to reach the masses. We have to convince people that eating the way our ancestors did isn't just another fad diet like the ones that always get the media attention, but a diet you can stay on for life because it's part of a healthy all around lifestyle. We have to put pressure on congress to change the laws so that companies aren't fined and raided by the fda like they are now for selling natural products or foods that the fda deems "unsafe". Someone should make a definitive documentary (besides the great ones that have already been done) exposing the revolving door between congress, the fda, big pharma, and the food industry and contrast that with the natural treatments in the US and around the world that are healing many and cost significantly less. Most people don't wanna hear that what they've known their entire lives isn't true, but giving them the truth is only the first part of the equation. A wise professor of mine once said we're a back up against the wall society, but if that's true, I say we have to get the truth out to the next generation and convince them it's worth changing for so they never reach the point where their back is up against the wall. But for now, for the people who know the truth about diet and health as we do, we just have to change the lives of the people in our own lives because to those who are given much knowledge, much is expected in return.
Just reading your story made me angry. I couldn't help it. I even had a mild, very mild version of the same story when I was in the Army so I know that the less medical care you can manage to have the better off you are.
I've also been lucky enough to encounter honest, sensible doctors who took "do no harm" very seriously. Frankly, in many places they are the majority but in others they have to leave because they're rocking the boat. We have some in this community who are amazingly giving and not just about the money.
As to how we help those in similar circumstances, that's a tough question. In my view, the malpractice movement didn't do it; it just transferred some of the money from doctors to lawyers. Web sites like PH can do a lot of good if people find them.
But the good guys don't always win. Those who break out will be those like you who had the inner strength--and perhaps a champion--to reject the situations that are wrecking their health.
Join the club :(
I spent 14 years trying to figure out why I was getting progressively worse when I was eating a "perfect" diet. I was lucky enough to refuse meds...which is why all the docs thought I was crazy. (Yah, they fired me, and I fired them, on a few occasions.)
Anyway, I'd suggest you document the costs and send YOUR description of the solution to the FINANCE department of your insurance company and to the US Health Department Secretary. Strange, yes, but if enough people start documenting solutions and the COSTS associated with the medical system, it will help those who are fighting this battle.
When 80% of the US population is on at least one pharmaceutical/prescribed drug, it is easy to see who is winning and losing.
We have to recognize that this situation is EXACTLY the same as the mortgage crisis and it will bankrupt this country as we won't be able to provide a quick solution through a bank bailout.
You should also send a letter to all the docs who worked with you and CC their boss and upper management. There is no natural feedback loop for MDs as patients just leave them when they are dissatisfied, rather than having an 'exit interview'. It is important to document, document, document...
I also think it is really important to give POSITIVE feedback to your MDs. It is an extremely tough job, where most of the feedback is negative. So when they do something you feel is good, no matter how small, I let them know.
Behavior that is rewarded its repeated. It is quite simple. We just have to stop Big Pharm from being rewarded, and we have to increase the rewards to MDs who successfully improve the health of their patients through low cost means.
The way our medical system works is so frustrating. As an analogy, if one eats at a restaurant and there is a problem -you can: choose not to tip, get a discount, talk to the manager and get your meal for free, create a bad review online (without getting sued), and even protest at the place if you wished.
But with doctors you can't do this! Instead you get to pay for all the services that didn't work or even worse -caused harm, keep silent, and go away. Our medical system is built to treat with the extreme, or call it hypochondria and send you on your way. It really needs to be switched to starting with simple solutions and prevention -like diet.
I think the only way out of this is grassroots. When people like you get the word out and tell their story. Or people like that woman who is in the media right now about curing her MS with a paleo diet.
Thanks for sharing your story!!
I never had fistulas with Chrohns. Just skin tags, which they can't do anything about, blockages, severe pain, rashes, hair loss and depression. 9 mp actually was the best drug they had, but they only did it for like 6 treatments. My mom brought in a pizza, it might have been cheese free, when I was in there, at around 18 years old. Everybody else was 40-80, getting cancer treatments, iron removal (cool device), and probably a few other treatments I'm not aware of. The pizza was worth it though, and they had the Spanish channel. My chrohns has improved a lot on paleo, however its not totally gone. SCD sounds like I would have to get rid of potatoes, and all sugar except honey. I am not on asacol or dycylomin anymore.
Paleo for Crohn's 6 Answers
Paleo for Crohn's 3 Answers
Eating Fish every day? 10 Answers