Cause of UC hypothesis RANT

I just want to throw this out there to get it off my chest and see if anyone has any feedback on it. Feel free to respond positive or negative it all helps and I love the input from others with this condition...

     I've been trying to discover over the past 14 years I've had UC- what is the cause and why are some predisposed to it while others are perfectly fine. Is it genetic? Is it an environmental byproduct? Is it dietary? Is it modern medicine?  Maybe all of the above. I went to school for biology and became obsessed with the human colon, I should have become a GI-I'd be making more of an impact than I am now.  Nonetheless, I've been attempting to create a logical solution to a question that has even the best scientists baffled- Who gets UC and why?  Here's my current concoction (which is always subject to change by talking to patients and acquiring modern info)  I believe UC is caused by a patient already predisposed genetically to an over-reactive immune response.  This can work as a benefit and as a curse.  The body reacts to a virus, parasite, yeast or more commonly a bacterial imbalance (the bad guys overrun the good) caused by improper diet, poor nutrition during childhood (I wasn't breast-fed so i didn't receive my good guys early but thats another topic), or receiving antibiotics that kill off selective bacteria while leaving certain undesirables to prosper (cdiff etc).  The yeast feeding from high sugars, refined breadmeal, and poor fiber "brooms" create and environment desirable for bad bacteria to flourish and vice versa.  They gang up on the good colonists and try to oust them from their perch.  When this is accomplished the colon becomes inflammed from the toxic byproducts (hydrogen sulfide, cadaverine, putrescene sp.) which are highly irritating to colon walls. This accounts for the stench of flatus during onset of flares.  When the infection penetrates into the gut lining (leaky gut) the immune system freaks out and begins attacking everything with antibodies and causes diarrhea to flush the organisms out.  This is bad because the bad guys already have a foothold and it keeps the good guys from making a comeback, which is the benefit of Human Micro Flora probiotics.  Things like yogurt aren't really all that helpful other than helping to create pH change because the flora doesn't really belong there its meant to ferment milk products.  The bleeding from UC can be explained by the walls of the colon being consistently bombarded with toxins and digestive juices from the bacteria and yeast feeding off it and the nutritious undigested fecal matter that passes by. The body overproduces mucus in copious amounts (like having a cold in your guts) except instead of blowing your nose you defecate-alot. 

The GIs don't want us to know this stuff because they are making tons of money off prescripts and visits.  It is beneficial for them to keep you sick because you don't need them if you are well.  Think about it, how many of you actually have received a phone call from your GI asking you how you are feeling?  Maybe a few... but in fact he really doesn't care, you are now paying for his timeshare in Bali.  The reason I say this because I am saddened by all the medications I see everyone taking in such large doses- does it need to be this way? Has none of you considered opening your mind instead of being a puppet of pills and anal cremes? I know that these meds are necessary in some applications and the comfort it brings offers temporary relief but at what cost?  I read all these posts about sides this and effects of that and personally I think the majority of them can be avoided by learning about the disease and its causes so you can minimize the effects- remember knowledge is very dangerous indeed!!  Now before I am assaulted by the guy who screams that he absolutely positively hands-down NEEDS his meds there are proper applications and legit times when modern medicine can work for you.  Personally I'm more impressed with stories of chinese medicine miracles, amazing feats of human healing by will alone, and shamanistic healing with plants and God-given naturals (remember the majority of the medicines your are taking arose from plants and animals to begin with- ie. pentasa=white willow bark etc.  I have no respect for the doctor who haphazardly slings out antibiotics for the sniffles on a child or adult who is perfectly capable of fending off the cold without it.  Antibiotics have been a blessing and a curse for modern day medical treatment. 

     I know its alot to read and if you've made it this far I commend you for listening to my rant.  God bless you all.                   

Treat yourself in the way the suits you best, and good luck. Please don't condescend to feel sorry for people who choose traditional medicines. That's their right just as your way is yours.

Like Heather, I have several autoimmune diseases, only one related to my digestive system. As for my UC, I tried many different diets and alternative therapies, but they just didn't work for me. If they work for you, that's great and I hope you stay well.

Please don't get me wrong here people. The terms I have used merely indicate my personal frustration with the system- not the patients of these drugs. To each their own- I am conveying my opinion of my personal findings and was not meant to insult or look down on anyone for any of their choices. That's just bad science. I was hoping to connect with people who share the same passion as I concerning this illness -not to degrade or undermine anyone's choices. I am, however, commenting on the lack of thinking outside the box and educating oneself and others concerning a chronic illness. My particular therapy has been customized for me, by me, over the course of 14 years of trial and error, hard at the books to be med free. Could I have accepted to live on remission meds? Yes. Will it work for everyone? Probably not. It's worth a shot to me. Most docs don't think outside the vectors of money and meds- it is up to us to share and discover new means of addressing IBD until a cure comes around (prob gene expression I think). My qualifications are merely scientifically-based. I've giving no med advice whatsoever, just giving choices, as I hold no Dr. in front of my name- Yet. I hold a B.S. in Biology from UDelaware and i am working on my masters. Someday I may become a GI specialist or perhaps I will or won't go to med school and take the fight directly into the system. I need to control my disdain for the medical field before I can make any concrete choices. My posts are opinionated and empassioned mixed with a hefty dose of churning out late nights and early mornings absorbing as much info as I can pack in until i get a headache. I sincerely apologize if I have offended anyone with my choice of phrasing, it was merely an empassioned young scientist's rage against the machine.

Please show me the evidence that GIs are not in support of our being well or that they are in colluison with pharmaceutical companies. It's insulting and offensive that you would post this with nothing to back up your claims. I know there are bad doctors out there who might take advantage of patients but I believe the vast majority of doctors really want their patients to be healthy and aren't looking for ways to pay off their vacation homes in Bali.

Sue

Calm down Sue :) I cannot provide evidence on an opinion of mine or others. I can merely give you some biased excerpts from writings I have come across. Believe it or not there are others who share the same outlook. There are good and bad docs out there u and I agree, unfortunately the bad ones are more highly criticized and publicized than the benefits the good ones perform. The way the world works. One article by New York Times called "Many Doctors, Many Tests, No Rhyme or Reason" Man goes into hospital short of breath comes out with a dozen procedures from a dozen specialists. Check it out. Another example, I am reminded of a brilliant writer/mentalist from Harvard named Jose Ancer who shares my opinions in some forums he has written. He argues and I agree: docs have been forced into "defensive" medicine, due to malpractice stats on the rise, regardless of cost in case of oversights that could ruin them. Better safe than sorry mentality regardless of social class and insurance. Pharm and insurance companies are the greedy ones that charge outrageous premiums and offer rediculous reimbursements that taint SOME doctors into performing some fee-for-service practice (unnecessary procedures and exams) to increase their earnings. Now the insurance companies must raise premiums to cover increasing costs it takes to cover the increasing costs of the buyer to cover the increasing costs of the specialists. Bad cycle for consumers. Many lazy couch potato people who don't mind gaining a few extra unhealthy pounds and avoiding the gym and diet change because their health insurance will cover the cholesterol controlling drugs and are making insurance companies take note that people are more willing to take more expensive drugs to counteract their poor lifestyle. Unfortunately the majority of people would rather take a pill than change their lifestyle. Fact. Before I get jumped for that one, let me explain that not every person is like that just quoting that obesity and health related problems are on the rise statistically and the insurance companies and some crooked docs are taking note, smiling.
Just like there are good mechanics and bad mechanics the trick is to find an honest GI who holds your overall well-being in the highest regard. Unfortunately for me and many of my friends and family this has been an uphill struggle but worth it when one is found. My opinions are based on personal experiences either through others or me. That's what I shared, my opinion. I also must address that I read your list of alternative therapies, Sue, and I commend you for thinking outside the box. That's what I'm trying to get at without insulting everyone. Geez. :)

Loneylane- Yes perhaps I may want to become part of the machine but I want to do it right. I want to start off as a dishwasher and work my way up rather than graduate and enter the field as a pompous manager. Like I said earlier, my disrespect for the medical profession needs to be subdued before I can make that step. I like the fact that your doc offered choices when confronting this illness, many do not give you that option its like "here take this see you at your next appt." Many don't live in cities and are able to get 2nd opinions from specs. I was a scared young healthy active boy entering college when diagnosed and terrified by an overwhelming slew of procedures and meds with no information other than its probably caused by a virus, case closed, take these (24 pills/day) Pentasa, prednisone, some weird belladonna extract crud and something I'm really not sure what it was now or then. Once you get better these 16 pills will keep you healthy. What? I made it my mission to dive into this and learn as much as I could to educate myself from these meds that nearly destroyed me. I want to engage anyone and everyone who thirsts for knowledge and wants to make the best out of a stacked deck. These are my opnions only and I offer no professional advice, just what has worked for me and some others who have sought my path. Thank you for the kind words about staying well. God Bless.

Yep, I had the same thing; had some terrible docs until I found some I liked, and did research to find out what was best for me along with telling my doc straight about my lifestyle. And trust me....my late husband first had UC, and then I was dx'd with it...so yeah...lots of research.

I agree that most GI's do not think out of their very small, self induced box.  I have had UC for eleven years, and not one of four GI's ever ordered a blood test.  I asked for one myself through my family doctor recently, because I have been having some other problems that could be auto-immune related.  My latest GI thinks that Prednisone is the cure all for everything, and when I asked him about taking pro-biotics, he said he didn't think it was necessary unless I was also taking anti-biotics at the same time.

I was fortunate to find a GI who encouraged me to get off Remicade once I started to feel better...my impression was that he truly cared about my well being, unlike many others out there.

I agree with the statement, "Unfortunately the majority of people would rather take a pill than change their lifestyle." Just last week, I was in a health food store listening to a man who wanted supplements to "prevent" diabetes and high cholestrol (sp); The store keeper told him to watch his diet and exercise, but the man insisted on taking something...so there are people like that out there.

I understand where you are coming from and I feel the same frustration...however, it's not wise to brush all GI's with the same brush, which is what the following statment implies, "The GIs don't want us to know this stuff because they are making tons of money off prescripts and visits."; I do believe that money is a key motivator for most doctors but not all.

Also, I am not going to look down on those who take prescription medications, especially if it works for them. Personally, I prefer to take herbal supplements but that's just me...everyone is different and everyone's situation is different...but the goal is the same...remission.

You know what bothers me, while it's true that GI's, Doctors, Pharmacies, etc. are making a killing off us...I can't see the manufacturers of the prescriptions we take, coming up with a cure because it's not in their best interest to cure us while they're getting rich.

NBT

ucwarrior....this is just a suggestion....please put your thoughts into paragraphs...lots to read, but easy to get lost in the thoughts.


You didn't answer my questions.

Initially......you haven't accepted UC as part of you. A huge flaw in your equation.

q

One must be genetically predisposed to getting IBD (either UC or CD), there are many triggers out there, smoking is a known trigger for crohn's, it's also known that the way our system reacts to harmless bacteria is also a factor for both UC and CD, also, it's known that fast-foods, processed foods, animal fat and caffiene are significant factors in exacerbating IBD symptoms.

Doctors don't know everything, researchers are the ones that do the researching and pass off their info, doctors are learning as we the patients are (trial and error), look how probiotics and the fact that harmless bacteria is being attacked by our system has been recognized in the recent past, 17 yrs ago when I got sick none of these things were even being entertained by the researchers to the best of my knowledge, same with smoking, they knew back 17 yrs ago that smoking (the carbon monoxide) had an anti-inflammatory effect on an inflammed colon, but it wasn't known that is was riskier for crohn's patients to smoke or be around second-hand smoke.

Give credit where credit is due...I've learned alot from my CCFC journals, and although it's a slow pace, scientists are working hard at trying to figure this DD for all of us and searching not only for a cure but for a way to stop IBD in it's tracks so there doesn't have to be any future IBD sufferers.

:)

Sorry everyone about the frantic lack of paragraph breaks and poor grammar. I will be a little more easy on the eyes.
Beth, I made a statement I guess I should have clarified earlier. Not all docs are bad and not all are good. My personal experiences with GIs have left a bad impression (really bad) and I guess I was a little premature and perhaps immature by making such a generalized clearly biased statement. I'm very happy for you that you have found a GI that truly cares, cherish that relationship- it doesn't happen to many.
I agree, Docs aren't superheroes. They also are not super villains as I may have portrayed earlier. However, I do believe and agree with princesa and Teresa when they said many docs feel that they have nothing left to learn. Ask some of the 90+ year old left over bushido practitioners from Japan who still have yet to master their art despite a lifetime of dedication and their obvious elite status compared to normal man.
To not learn from your patient is a foolhardy mistake, to not encourage knowledge is arrogant. All to often some doctors try to one-up the patient to establish mental dominance, trust, and compliance from the patient by intimidating them with medical jargon. Its like another language not everyone can speak and it causes a temporary submission of the patient into inferior mindsets so that his words will be heard with more authority. This is a trick not just used by docs but law enforcement and lawyers utilize as well. Not all do this but some do and that's what I'm speaking about. Its the "I went through lots of school spent alot of dough and you need to remember this when you get your bill."
The mental game needs to be tempered with herbal remedy/medication on occasion to give your body, spirit and cognitive function the jolt it sometimes requires. I'm not sure of how much of this is placebo but the jury is still out on that one... I do believe that medications may work wonders for some and I respect anyone who has made their own choices. I know what you mean about the bloody flux. I think that the impact of bleeding and the mental and physical condition it puts one in can be taxing on even the strongest of minds. I'm not sure even strong will can stave off the bleeding mindset. Pentasa has worked on more than one occasion to remiss the bleeding so that the treatments and my mind can take over. But pentasa is just an aspirin derivative that has an acetyl configuration. 5ASA 5 -acetyl salicylic acid. sorry if the spelling is off, been awhile since organic chem. Aspirin supposedly originated from white willow bark- a natural painkiller in some circles. The anti-inflammatory effect of pentasa is increased as it is usually coated with a gel cap to deliver it to the colon like an ICBM missile or cluster bomb. Yellow Microbeads floating in the water! Flush- bye bye two dollar a pill pentasa! Yay! I wonder if willow bark tea could be mixed and eventually bound with metamucil to deliver the same effect? Hmmm. Don't try this at home folks, it could be hazardous to your health...
As far as the treatments, I believe Email format would be a good option for us. I seem to come under great scrutiny when I brainstorm haphazardly and share such information. Remember I am no Doctor and you MUST consult a licensed pro before trying or altering anything I tell you.
q- I will reply u next, didn't forget about ya friend!

Mike

One of the major problems with the so-called "natural" treatments by which you are more impressed is that their manufacturers lobby vigorously against any attempts to get them to standardize/regulate their products. (If you Google "DSHEA history" you'll get a glimpse of exactly how complicated and corrupt the "food supplement" industry is.) As a result, *unlike* with FDA-regulated pharmaceuticals most of the time, you can never be sure that what the manufacturer claims is in a "natural" product is actually there at all, is there in the amount claimed, and isn't adulterated with other things that may harm you. Supplement makers are not resisting regulation for our health; they're in it for the Benjamins. So let's not go all good-cop/bad-cop in our understanding of this just yet.

No one knows what causes UC. The latest theory is something like what you describe. But, as others here have pointed out, there are other features of the disease (why does it always start at the rectum? why do many people not have the bad flatulence you seem to think is standard? why doesn't it spread to ileum except in "backwash ileitis"? why does "backwash ileitis" happen, anyway?) that have to be accounted for by a really good theory. Unless GIs are actively involved in IBD research, they are just as dependent on the work of researchers to inform their clinical judgment about treatment as we are. So to say that one's GI doesn't know what the cause is isn't much of an indictment. I haven't met one yet who claims to know.

Indeed, if I've experienced anything from GIs (or from all other internal medicine physicians), it's their sense of awe and frustration about what is unknown. Granted, the economic arrangement of our health care system doesn't leave them much time to elaborate on this in appointments. But one way or another, I have heard it from nearly all of the doctors I've seen.

My GI does not have a time-share, in Bali or otherwise. They're a terrible investment, and she's way too smart for that!

Post Edited (Charlotte Gilman) : 8/13/2008 4:08:15 PM (GMT-6)