Remember, I am neither a doctor nor a drug researcher, nor have I ever worked for the FDA or any pharmaceutical company. I'm just someone who was diagnosed with Ulcerative Colitis back in 1980. All I know is me. I take full responsibility for all the typsos and missesinformations on every page in this blog. Again, always look into these things yourself. Be sure to ask your doctor and pharmacist what the latest research is on all these immune suppressant technologies they want to treat your whole system with. Inform yourself. Like the doormouse said, "Feed your head." Thank you, Grace.
Here is an excellent detailed description of what to expect with a colonoscopy (pronounced: KO-lun-AH-skuhpee)
GETTING A SECOND OPINION
Be aware of all your choices and ask your doctor lots of questions. Be sharp, informed, and relentless. Doctors sometimes mis-diagnose, mis-prescribe, and make mistakes. Doctors don't really encourage you to get a second opinion. Their feelings (and pocketbook, more likely) are going to be hurt. Get a second opinion if you want to.
HOW DO DOCTORS DIAGNOSE INFLAMMATORY BOWEL DISEASE ?
Know that it's not easy for doctors to accurately diagnose IBD because of the wide spectrum of ailments attached to the diagnosis. These ailments can overlap into other possible diagnoses.
In order for a doctor to prescribe medication, a diagnosis needs to be made. There are many medications the FOOD AND DRUG ADMINISTRATION (FDA) has approved for the treatment of the various forms of INFLAMMATION, including INFLAMMATORY BOWEL DISEASE (IBD). Do your own research and be aware of all the medical treatments available to you before you decide. Doctors often have their favored treatments and they'll want you to consider their judgment. Meanwhile, know what other treatments exist so you can consider the diagnosis from all angles before you, your family and your doctor decide on the right treatment path for you.
WHAT IS A COLONOSCOPY ?
For many, the idea of this simply strikes fear in the heart of all those who really don't like anyone poking around their private parts. In the case of a possible IBD diagnosis, patients must try to set that fear aside. It can help if a patient knows they'll be sedated during the procedure.
In the case of IBD, there simply is no other way to get the best diagnosis. In all likelihood, a patient is going to have to have a COLONOSCOPY.
A COLONOSCOPY (pronounced: kolun-ah-skahpee), is pretty much what it sounds like: putting a special telescope up your rectum to see what's going on up there. In other words, modern medicine, in order to make an IBD or IBS diagnosis, inserts into a patient's rectum a snakey, flexible tube with a tiny hi-def camera attached to its head. As you're lying on your side, most likely sedated and sleeping, a doctor will have a tv monitor available to highlight the areas and monitor the movement of the flexible snakey camera.
Before another kind of procedure, a patient may be required to swallow a radioactive mixture to highlight the entire length of a patient's intestinal lining and, with a radiologist, photograph and report on the affected areas. Sometimes, too, a similar radioactive mixture will be administered via the rectum, as an enema.
Are we having fun, yet?
HOW MIGHT PATIENTS PROTECT THEMSELVES ?
A good way for patients to protect themselves is with INFORMATION. Doctors like it when a patient considers theM the last word on treatment options. A doctor's ego loves a patient's blind trust in the doctor's judgment. Doctors want to keep and build their patient base. Doctors have a finely tuned presentations and word-flow to convince you of their qualifications in diagnosing a patient's case. A doctor's presentation might come cloaked in some dire forecast and a 'You're the patient, I'm the doctor' kind of vibe to keep you from exploring, examining, and considering other information that you might need.
Doctors want patients to believe that more information is bad because it confuses the issue (for them). Doctors don't like it when they're put in a position of answering questions they may not know the answers to or be put in a position where they have to discount all the information you're gathering. Doctors want you to trust their information not anyone else's. They will try to convince you of their superior knowledge based on the fact that they went to med school, have certificates of achievement and acknowledgement on their walls, and have years of experience with a patient's diagnosed condition. It's a cultural message doctors don't like patients messing with. I'm the doctor, you're the patient, and, as the patient, you should listen to me and only me.
The reality is that doctors today can't possibly keep up with everything, even about their own fields. They won't tell you of course, but many rely on the pharmaceutical industry and 'peer reviews' of pharmaceutical research for their primary sources of information. Knowing that doctors often settle on a treatment and stay with it until whenever, gives you the opening to do your own homework on the matter, leaving no stone unturned, until you, your family and your doctor determine the right course of treatment for you.
Overall, RESIST IGNORANCE. Be your own advocate and fight for the highest quality of life and disease treatment you can. Doctors do that for themselves, why shouldn't you?
WHAT IS INFLAMMATORY BOWEL DISEASE AND HOW IS IT TREATED ?
INFLAMMATORY BOWEL DISEASE (IBD) is an AUTO-IMMUNE DISEASE. Characterized by CHRONIC INFLAMMATION, a body reacts by sending an battalion of white blood cells (the infection fighters) to the intestinal lining. It is a general category under which several specific AUTO-IMMUNE DISEASES fall.
With ULCERATIVE COLITIS inflammation usually affects only the innermost lining of the large intestine (colon) and rectum. If the damage and inflammation continues into the small intestine, it is no longer diagnosed as UC.
CROHN'S DISEASE, also an IBD, causes inflammation in the small intestine in 70%-80% of those diagnosed. However, the inflammation of CROHN'S DISEASE may not stop there. In reality, CROHN'S DISEASEcan affect any part of the digestive tract, from mouth to anus.
Interestingly, CELIAC DISEASE, upon diagnosis, is treatable by removing GLUTEN from a sufferer's food choices. Think: everything made with wheat. Which pretty much eliminates a lot of processed foods.
Other IBD's include COLLAGENOUS COLITIS, LYMPHOCYTIC COLITIS.
PSEUDOMEMBRANOUS COLITIS (PC), a severe inflammation of the colon, can occur in cases of C. diff infection (see my blog page on C. diff. for more). PC is often, but not always, caused by the bacterium CLOSTRIDIUM DIFFICILE. The abbreviated name C. difficile colitis or just C. diff, is also commonly used to identify this bad bacteria.
Prematurely born infants are often in the hospital for weeks or months at a time. During their hospital stay, preemies have, up until recently, been fed a cow's milk-based formula. As a possible result of not having human breast milk during their stay, preemies have been known to come down with NECROTIZING ENTROCOLITIS, a bowel inflammation that often requires surgery.
GREAT NEWS! The recent introduction of human breast milk into the diets of preemies while in the hospital (eventhough pasteurized) is showing promise in dramatically reducing the rate of complications, including NECROTIZING ENTROCOLITIS, in the early lives of these little ones. Human milk for human babies. Imagine human milk having an effect on their health. I get it: Cow's milk is for calves; human breast milk is for humans.
How many little lives could have been saved if human milk for preemies had been insisted upon by the medical establishment in the 1950's? In hindsight, why doesn't modern medicine collaborate with common sense?
More importantly, why has it taken so long? Why does modern medicine discount anecdotal evidence that can be witnessed by those open to the power of nature? Do doctors really believe they know more than nature? And if we could have figured this out 60 years ago, is there anything else we might currently be overlooking?
I'll tell you this: If nature doesn't like modern medicine's 'work around' to a particular disease (Oh, I don't know, Immune Suppressants and Antibiotics just leap to mind), modern medicine loses. And if modern medicine loses, where does that leave us in 10, 20, 100 or more years from now? Further away from nature or closer to it?
Has our 'war with nature' created a wake of ill health yet to come? Time will tell, of course, whether it's a ripple or a tsunami.
You know it. I got questions.
Are we experiencing the consequences of that arrogance? I have no idea. The cultural message I received growing up was that 'nature' was something to be 'conquered' and modern medicine and science were going to do just that. We would become masters of nature and make the world better for all. that pillar of medicine, Jonas Salk, and his cure for Polio, may have paved the proof for that premise. That premise has gone a long way toward establishing modern medicine's dominance of our health industry. It may be haunting and hurting us today.
By the way, Jonas Salk gave away his patent to his cure for Polio. For the good of humankind. Imagine a Jonas Salk today. I don't think I can.
WHAT IS IBS ?
IRRITABLE BOWEL SYNDROME (IBS) is DIFFERENT FROM INFLAMMATORY BOWEL DISEASE (IBD)
Although IBD and IBS may have similar symptoms, they are different diagnoses. Modern medicine makes the distinction between them by advocating ANTIBIOTICS as well as food choice and lifestyle changes for IBS whereas modern medicine takes a purely medical approach to IBD's.
IRRITABLE BOWEL DISEASE affects about 0.3% of the population, or about 1 million people.
In contrast, IRRITABLE BOWEL SYNDROME (IBS), affects about 10%-20% of the population in the U.S., or 30-60 million people.
IBS is accompanied by generalized gut discomfort, bloating, gut pain and loose stools. With 30-60 million people, that's a lot of suffering. Women, it turns out, suffer from IBS at a rate almost twice that of men. Some studies suggest that intestinal bacteria play a role in the onset of IBS.
MEDICAL TREATMENT FOR IBD
Medically treating IBD takes a team of specialists in digestive diseases (gastroenterologists), surgery, pathology, radiology and nutrition care.
The Mayo Clinic in Rochester, Minnesota ranks No.1 for digestive disorders in the U.S. News and World Report Best Hospitals rankings. The Mayo Clinic in Scottsdale, Arizona and in Jacksonville, Florida, are also ranked among the Best Hospitals for digestive disorders by U.S. News and World Report. The Mayo Clinic treats over 3,000 adults and children diagnosed with IBD every year.
Initial medical treatment options include ANTIBIOTICS and IMMUNE SUPPRESSANTS. Once diagnosed with an IBD, a patient is confronted with the possibility of needing a lifetime of medical treatment as well as doctor and hospital support. This can become quite daunting for many when the treatments - sometimes daily/sometimes every 6-10 weeks, depending on the medication - wear off and symptoms return. Remission is only temporary, and in many cases lasts only as long as you're taking the medicine at the intervals prescribed. Doctors are focused on remission and they will remind a patient of that, their only goal. Modern medicine offers only treatment and the possibility of remission as being a patient's only choice.
There may be four possible instances where a doctor might alter your treatment, but not the goal of remission.
If the patient experiences serious (hopefully non-fatal) side-effects;
If the patient doesn't appear to be responding to the prescribed treatment;
If the treatment drug has been recalled by the FDA because it poses a greater threat than originally acknowledged; or,
If there's a 'new' treatment the doctor wants to try on you. Which is almost guaranteed if the FDA recalls a patient's current treatment drug.
Point being, it's difficult to get off the treatment once it starts because doctors counsel patients to be treated for a while so they can see how a patient is responding. Modern medicine collects and analyzes data while monitoring a patient's progress. If a patient appears to tolerate treatment in the short term, that reinforces the doctor's prescription and opinion concerning your continued treatment. For both patient and doctor, the remission of a patient's diagnosed and reported symptoms is the one and only hoped-for goal. Doctors will fight for a patient's remission.
It's hard for a patient to imagine medical treatment being part of their life without foreseeable end. Not hard for doctors to imagine, however. No one knows all the long-term effects of these new medicines the FDA is approving. When new meds are approved, there's limited testing info available and what IS available is often provided by the pharmaceutical industry, who oftentimes are both the inventor and the researcher. Upon approval by the FDA, modern medicine will want a patient to participate in their treatment program for at least 6 months, hoping for several years of treatment.
Part of the psychological mosaic for treatment is that the patient prays for modern medicine find a 'cure' by the time their treatment of choice loses its effectiveness or the patient contracts a short-term, untreatable, SUPERBUG INFECTION or their drug of choice is either discontinued, reformulated or recalled by the FDA, or made into a generic version that may cost less.
Believe me, I'm praying with those patients.
INTRAVENOUS IMMUNE SUPPRESSANT TREATMENT
The specific treatment I'm referring to here, I have absolutely no experience with. Do not trust my observations as they are most likely ill-informed. Trust only yourself. Always ask your doctor questions. Do your own research before you, your family and your doctor choose a path for the treatment of your IBD diagnosis.
VEGAN SPOILER ALERT! This intravenous drug is made with mouse proteins. That's correct. MOUSE PROTEINS.
Please Note: There's another variation without mouse proteins, but I just thought this was interesting, too.
This is a widely prescribed drug of choice by many GASTROENTEROLOGISTS for INFLAMMATORY BOWEL DISEASE diagnoses, such as ULCERATIVE COLITIS. Administered intravenously and only in a doctor's office, it takes 1-2 hours per patient visit. Each patient session costs in the neighborhood of $5,000.00.
Let's read that number again: $Five Thou$and Frea$in' Do$$ar$$$. PER TREATMENT.
Just a rumor I heard, prob'ly. It can't REALLY be THAT much. Can it? I feel so sorry for those who can't afford remission at that cost. I guess they're just going to have go on suffering. Ah, today's 'Healing Arts.'
1-2 hour intravenous administration for this drug is recommended every 6-10 weeks, depending on the duration of the treatment's efficacy, or effectiveness. The yearly cost of treatment every 10 weeks (at 5 treatments per year) is about $25,000.00. Every 6 weeks, closer to $40,000.00 a year.
In terms of annual potential profit to self and pharmaceutical shareholders, not a crime, the more often a patient needs treatment, the better.
Sheesh! Someone figured out that everyone's ass was a goldmine. And you don't have to dig that far! It's a beautiful world.
This intravenous drug you should also know, has been labeled a BLACK BOX DRUG.
WHAT IS A BLACK BOX DRUG ?
After a drug is approved by the Food and Drug Administration (FDA) and more data has been collected from testing on larger populations and specific demographics, it might be discovered that people are having more severe or even more fatal reactions to the FDA approved medical treatment than anticipated.
Here's another stoopid question: What threshold of cumulative harm does a treatment have to pass before it's recalled by the FDA? How is that cumulative harm assessed? Are those assessments ever historically minimized in peer-reviewed research reports leading up to the recall? Is there a specific threshold for fatalities, for example? Is it one fatality? 10? 1,000? I got questions.
Before an FDA approved is recalled, it may be given another label: BLACK BOX DRUG
Classifying a drug as a BLACK BOX DRUG, means that it's potentially more dangerous in its side effects than originally believed based on the research stats available at the time of approval. A BLACK BOX DRUG also comes with stricter regulations regarding administration. This usually means the treatment must be administered in a doctor's office or hospital setting. There can be no self-administration of this treatment whatsoever.
In light of this, this intravenous IBD treatment has its fans. I hear it's pretty good at accomplishing the goal of remission.
OTHER MEDICAL TREATMENT OPTIONS
IMMUNE SUPPRESSANTS administered intravenously are only one of the current medical treatments of choice. There is also a lot of advertising in the newspaper (remember those?) and on television and the internet about other medical treatment options and other programs with pharma-sponsored experimental treatments that you can get paid for if you volunteer to be part of their study. You might get to take a harmless, useless PLACEBO (an inert or 'nothing' pill) OR, look what's behind THIS curtain...!... You might get to take the actual drug they're experimenting with. Once you've signed off on the risks and agreed to be part of the study, the company of researchers is absolved of all responsibility if you happen to drop dead from their brand spankin' new treatment.
As a simpleton nobody bloggin' on the internets might say, yer takin' yer chances, too. Along with your doctor, always understand the risks of all treatment options before signing off on them. Modern medicine has ways of pre-selling doctors on what treatments they should offer to their patients. Historically, cute pharma reps plying gifts, trips and flattery have been some of the ways into a doctor's heart. And wallet. Good business people know how to make relationships work.
SOME RISKS OF IMMUNE SUPPRESSANT TREATMENT
IMMUNE SUPPRESSANT medications suppress a patient's entire IMMUNE SYSTEM, opening a pathway to other potentially serious infections. Why? Because these IMMUNE SUPPRESSANTS do a really good job of shutting down, or suppressing, a patient's IMMUNE SYSTEM. With a compromised or completely shut down IMMUNE SYSTEM, a patient has no immune system defenses. Even if their body should be invaded by the common cold.
When a patient has a bacterial infection, ANTIBIOTICS are often prescribed to kill the bad guys, the bad bacteria. Killing the bad bacteria is a good thing.
Unfortunately, ANTIBIOTICS also kill all the good guys, the good bacteria, much of which rests in your gut, and much of which is responsible for keeping infections away and inflammation down to a minimum and keeping your body strong and healthy, resistant to disease.
A big problem arises when too many of the good bacteria are killed off by ANTIBIOTIC treatment. The human immune system, most of which resides in your gut, in your intestines, has an innate propensity and drive toward health. The immune system tries desperately to renew and rejuvenate the good bacteria in your immune system back to a healthy level. But each time it's hit with dosages of IMMUNE SUPPRESSANT DRUGS or ANTIBIOTICS an immune system can be compromised or even peremanently crippled. An immune system has to start to try and rebuild itself all over again. Relying only on a patient's compromised defenses to do the rebuilding is a huge, sometimes impossible, task.
And now, although it's buried and not in the headlines, pharmaceutical companies are scrambling because the overuse, misuse, misprescription and abuse of antibiotics in both patient and hospital settings, has resulted in SUPERBUGS and SUPERBUG INFECTIONS.
WHAT ARE SUPERBUGS ?
The Centers for Disease Control and Prevention (CDC) has just released (2013) its first report EVER on the proliferation of SUPERBUGS. This CDC report paints a dire picture of drug resistance in the United States. The CDC has concluded that SUPERBUGS are the result of our over-reliance, over-prescription, and thoughtless misuse of ANTIBIOTICS. Patients aren't finishing their full prescription. Patients are not being told consistently of the benefits of following their daily ANTIBIOTICS with better nutrition and with PREBIOTICS and PROBIOTICS. It's a big problem because these SUPERBUGS, are bacteria that have adapted to their antibiotic environment, survived, reproduced and are now resistant to current ANTIBIOTIC treatment. Hospitals are trying, but they're having problems with these SUPERBUGS infecting their patients whose health they're committed to.
Tom Frieden, CDC's current director, expressed his concern this way: "We talk about a PRE-ANTIBIOTIC ERA and an ANTIBIOTIC ERA. If we're not careful, we'll be in POST-ANTIBIOTIC ERA. For some patients and some microbes, we're already there."
So now we have a situation where we desperately have to invent new antibiotics to kill these SUPERBUGS which will leave other, more powerfully defended SUPERBUGS than before, perpetuating a cycle that is great for publicly traded companies and their investors but are anathema and even deadly in their threat to the public's general health.
And many of these patients are dying. It's been reported that more than 2 million people get anitbiotic-resistance infections every years, and that 23,000 die annually from their illnesses. These SUPERBUGS are invading our hospitals and patients are then taking these home with them. This leaves patients in a dire situation where doctors have to say they've exhausted their treatment options with their patients who have acquired these SUPERBUGS.
When a doctor runs out of tools to help a patient, because doctors can't fight these new infections, where does a patient go? If your body can't muster the defenses to heal, you lose, we're so sorry. You realize, of course, we've done the best we can.
If you don't get treatment and you don't die in the hospital, you're on your own. Helpless and suffering until they invent a 'new treatment' or experimental ANTIBIOTIC drug for your SUPERBUG, a patient suffers to their inglorious end.
Ever wonder why obituaries often list 'pneumonia' as the cause of death? My theory: IMMUNE SUPPRESSANT or ANTIBIOTIC treatment for years, prescribed for their particular INFLAMMATORY DISEASE. Doctors will blame the disease, patients will buy into it and then, in their own obituaries, will thank their doctors and caregivers, often by name, for their treatment and care. They might suggest you make a donation to help cure that disease. It's a perfect world.
Again, just one person's cwazy opinion, not worthy of consideration, really. Move along. There's nothing to see here.
I'll offer my stupid humble opinion this way: The path to health is not through chemical management of symptoms but a world-wide, nutritionally-based paradigm shift worthy of a revolution. I know. That's a mouthful. I did say revolution, though, didn't I?
Within that shift, doctors and scientists will again be healers and trend closer to a doctor's Hippocratic Oath to do no harm. I predict that this time period of pharmaceutical myopia, its obsession with disease-categorization and drug treatment over-invention, along with its direct to consumer marketing campaigns encouraging consumers to self-diagnose, is going to be seen for what it is: medieval. And I'm just talking gut treatment here, nothing else.
ANTIBIOTICS IN OUR FOOD SUPPLY
Used for fattening up cows and poultry so as to get them to market faster, ANTIBIOTICS have been marketed to and used by agribusiness for decades. There was nothing about organic meat or poultry during the first 30+ years of my life and, feeding myself a lot of fast, convenient, packaged, pre-made food from convenience food places and coffee shops, I consumed a lot of ANTIBIOTIC treated meat and poultry.
(In 2011 according to the FDA, 30 MILLION pounds of ANITIBIOTICS were used on chickens and other food animals. The FDA in 2013, right now, is planning to ask drug companies to stop marketing antibiotics to agribusiness as a growth agent.)
There are many risks to any drug treatment under any and all circumstances. A patient has a responsibility to themselves to know what the risks are. Be brave and ask your doctor the important questions on your mind. Being informed in the first step toward being in control. I'm a big fan of being in control, especially when it comes to my health.
Please be cautioned: If a patient asks the question, "Is this the answer for me?" make sure a doctor is present. Patients should never do anything unwarranted. Patients should always consult with their doctor. And always ask lots of questions. Don't be intimidated by modern medicine's arrogant practitioners of which your doctor may be one. They're just humans pretending to be puffer fish, hiding behind their degrees and wall plaques. They prefer easy going, passive personalities who don't challenge them. When it comes to my own personal health, I'm on my side.
And sometimes the patient is more informed about things than their doctor is. BE THAT PERSON. Do not go quietly into that dark night of lifelong prescription medicine with possible unknown long-term effects, SUPERBUG infections and surgery. If I'm saying anything, and that's highly debatable, it's this: A patient must fight for their health because no one else is going to.
Fight for your best health, fight for all the information you're entitled to, and then, with your family and your doctor, make the best decision for yourself. And, by the way, be prepared to have some questions go unanswered. But don't make, "My doctor didn't tell me," a lifelong excuse for regret. No one knows you as well as you know yourself. People will make decisions based on their interactions with you. Give your doctor as much information as you can. Don't wuss out on this one. Be brave in your journey and unrelenting in your quest for your best health.
An' 'membah, I ain't no scientistic type, mahnd ya, so don't take any of mah flowery wuhds for nuthin' more than spit. All's I got is easily dismissable observations and silly questions that don't needs ansahs. Ah'm bein' tol' that, ovah and ovah agin. So's it mustah be true.