Cause of UC hypothesis RANT

New Topic Locked Topic Printable Version
48 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/12/2008 11:39 PM (GMT -6)   
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.                   

quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 8/13/2008 12:06 AM (GMT -6)   
Well, I know I have inherited the perdisposition to autoimmune disease. It runs in my family..both sides. I'm not passing it on, for it ends with me.

Can you explain why I have UC-related liver disease PSC as well...it's not my colon...and there are some who believe that IT comes first before the UC.

I'll take my GI over the ones I could have been sent to...thankfully he actually prescribes the 5ASA meds initially that have served me well for 19+ years. My last c-scope was unremarkable...a good thing.

All medicines are a blessing and a curse...definitely....but I do have a say in what I'll take. I take them properly....can't necessarily be said for many people. They are part of the problem for the superbugs out there.

Regarding a cold....that's one thing...a secondary infection of strep can cause serious problems and should be dealt with. Don't forget that many people have no problems fighting off their colds and severe infections at work, on planes, coughing and sneezing and never washing their hands. We have exposure to viruses from all over the world that people bring back from wherever they've travelled within a day or two. Fresh and fertile.

Let's not forget bathroom habits that many people neglect....especially in public places. Think of that the next time you pick up a book or magazine or whatever. Less than half of public washroom users wash their hands afterward....we don't know if they've just finished a bout of c.diff or e.coli or whatever else can be floating around. It's also on the walls, in the air, in the filter of those nice fast air hand dryers..etc. I won't even get into what's in the food supply based on the above.

Basically, people can be pigs. We can only do so much ....we're vulnerable. WE can't change what others do, but we can make sure we do the best for ourselves.

We aren't so isolated as we were not so long ago.....the body contends with a lot more than it once did. There are limits to everything. Hopefully, evolution will help eventually.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/13/2008 1:42 AM (GMT -6)   
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/13/2008 6:07 AM (GMT -6)   
I understand your need to rant but calling others puppets is condescending and not open minded as you are pushing.

I have tried every non traditional method over the past ten years. My diet has ALWAYS been very good. As a kid I ate extremely healthy and am sure it has had nothing to do with my UC. I became a vegetarian at a very young age and my father felt i should be monitored by a doctor (he feared I was not getting everything a body needs being a vegetarian). I hope that shear will heals you but for me it hasn't worked. Looking for answers in normal but what scientific background do you have for your theories?

Hmm...maybe it's too early for me to commenting, i seem to be offended. I try not to post when I feel this way.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 6:44 AM (GMT -6)   
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.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/13/2008 7:10 AM (GMT -6)   
I think everyone is different. I need a combination of pentasa and diet to stay healthy while a good friend of mine controls his UC with diet alone. Not eveyrone is so lucky.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/13/2008 7:15 AM (GMT -6)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/13/2008 8:09 AM (GMT -6)   
Sounds like you are trying to become part of the machine. My doc is always available to me and responds very quickly. Even to the silliest of questions...he never hesitates. Trust me, I have had some dilly of doctors, but isn't that in every profession? I believe personality also comes into play. My doctor gave me choices of how I wanted to battle this illness, and I chose what was best for my active lifestyle. It's worked, and I'm grateful to him for giving me the options he did. I'm also grateful that there were pharmaceutical options out there for me. I tried all the diets, holistic meds...nothing worked. So with that, I wish you well with your treatment plan.  

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 8:35 AM (GMT -6)   
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. :)

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/13/2008 8:42 AM (GMT -6)   
Sorry -- still happy that I have the choice to make on which doctor I want to see, and which choice of therapy I choose to do battle. In many parts of the world they are just happy to have a doctor who comes around every so often.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 8:55 AM (GMT -6)   
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.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/13/2008 8:56 AM (GMT -6)   
If ucwarrior's like me, he may have been to multiple gastros and had many experiences that would appear to support the impression that docs are just doing the standard of care and don't really care about the patient healing or don't believe it's possible. I believe I've seen six or seven different GIs since I was diagnosed in '99. I've been given slick educational materials produced by the leading pharmaceutical companies that encourage meds as the only way to control the disease. When I asked for unbiased educational sources, my doc laughed and called me a "conspiracy theorist." I've had doctors tell me I would never feel well again, that I would take increasingly more powerful meds until I needed my colon removed. I've been told that diet played no part although studies show that diet does matter - particuarly high sugar intake. I've been told lifestyle changes made no difference. I've never been warned by a doctor that repeated courses of broad spectrum antibiotics would be detrimental to my gut ecology... I could go on.

But the most dramatic sign to me is that when I achieved ongoing, long-term remission through my own research and efforts and became healthier than I was before I was diagnosed, no gastro doc ever showed any interest in my success or asked me what factors might have contributed to it. Neither have I seen a doctor get excited about my return to health; rather the message I've been given is that it's a total fluke and I should enjoy it while I can because it won't be long before a flare returns and I'll be ill again.

I find it hard to believe that this is an isolated phenomenon of a "bad doctor" when I've had pretty much the same treatment from several doctors in different practices. I don't believe it's an intentional thing to keep patients sick, but I do believe most docs have very traditional training and are not open-minded about alternative and supportive therapies. Most think they have nothing new to learn and certainly nothing to learn from a patient. They don't want to suggest courses of action that aren't backed by studies and there are no large studies on alternative methods and diet because no one stands to gain. Top it off with lots of pressure and rewards from big pharmaceuticals and you can see why things are the way they are.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/13/2008 9:06 AM (GMT -6)   
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.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 8/13/2008 9:33 AM (GMT -6)   

Hi,

I can read your passion I applaud your efforts to fix something you percieve as broken for the good of not just yourself, but for humanity. 

However, just because something is broken it doesn't mean:   1. repairing it need be overly complicated   or   2.  it needs to be in perfect shape to work.  I think everyone can agree to a point that modern medicine is less than perfect.  Certain docs, hospitals, drug companies, patients, etc misbehave and "spoil it for the rest of us".   If you let yourself get caught up in the layers upon layers of ethics, cultural bias and beauracratic politics that obscure the essense of modern medicine then you will be crushed by the frustration and your passion may turn to anger.

I totally understand one being drawn to a simpler, more pure, path to good health.  Our bodies were made to live from the earth and I'm sure as biologiest your know much more than I how perfectly our bodies benefit from the bounty of nature.  However, I sometimes feel like some people have forgotten the path medicine has taken.  Modern medicine didn't just show up one day, out of the blue, like a demon bent on making us more miserable than our disease----

It evolved to a fulfill a great need that was not being me by traditonal healing methods alone.   

(the obese, chain-smoking, couch potato is a cultural phenomanom.  you seem to begrudge them taking a pill.  But which came first?  the pill or the couch pototo?  and why?)

Also, perhaps the reason you would be most impressed by chinese healing miracles and healing by human will alone is because they are rare occurances. 

I wish you best of luck in figuring this out.  Just don't think so far out of the box that you lose track of what your aims are.


UC diagnosed 10/05, first symptoms 1983
asacol daily and rowasa as needed 
Trying out Digestive Fitness Probiotic
past rx: colozal, lialda, canasa


SunnyFlorida
Regular Member


Date Joined Mar 2008
Total Posts : 53
   Posted 8/13/2008 9:37 AM (GMT -6)   
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.

~~~~~Teresa~~~~~
 
Diagnosed with UC in 1997
Asacol 400 2 x 3 daily
Mesalamine liquid 60 ml once daily
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 10:13 AM (GMT -6)   
I like the way you think madabs. You have a very observant and kind demeanor. I have worked for pharm companies before and they are from the bottom up very nice people with good intentions. From the top down they are arrogant and harsh with the interest of dollars not health. C'est la vie! There are so many meds out there that come from nature: Digoxin=foxglove plant, taxol=pacific yew, lepachol=taheebo from brazil, vincristine(sp?) for leukemia=vinca vine the list goes on with no mention of the plant it was removed from in the ad ( some in fine print in the drug interaction secetion of the info for a disclaimer on allergen issues) yet many of the doctors who condemn nature's cures are the ones to prescribe it! Why? because millions of dollars are dumped into it testing on all sorts of creatures until a human trial is ready. Betcha won't see "never tested on animals" on a pharm label! Studies are published, a fancy catchy name is slapped on it and after the approval from you know who, it hits the market. They then act like it was some great feat in man-made medical phenomena to synthesize this magic drug, when in fact they merely stole an active compound from a bio-active molecule found from nature. Nature doesn't get the respect it deserves because the medical field is so busy tooting their own horns on their accomplishments of their companies it masks the real star of the show. Most of the man-made synthetics have such wretched sides that they have to say them real fast at the end of the commercial. Good thing theres another pill coming out to control the sides, hitting a drugstore near you, just ask your doctor. God gave us the means to cure what ails us in the form of nature, it just needs to be discovered.
Modern medicine kinda did just show up one day like a demon thanks to the discovery of penicillium from penicillin, that little blue mold that nothing grows next to. Just about every antibiotic now is a derivative or offshoot from molds. That may have been the best or worst day of modern man. I enjoy stories of medical miracles because they are so rare and shows the body is remarkable, but as UC sufferers are we a little rare ourselves? I'm fascinated by the power everyone has inside untapped and untamed. Monks and fakirs have spent their lives delving into the mind and are able to perform feats many people think only drugs can mimic. This was only achieved because someone thought outside the box and shared their info. Copernicus was laughed at for the longest time. God Bless.

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 8/13/2008 10:14 AM (GMT -6)   
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


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Post Edited (NuffinButtTrouble) : 8/13/2008 10:19:29 AM (GMT-6)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/13/2008 10:22 AM (GMT -6)   
well here's my 2 cents. Dr.'s are people too, they are not superhero's that can climb small buildings in a single leap or use their invisible jet to fly to their house in Bali. There are good ones and there are crappy ones (pun not intended but, lol). I have had some very bad experiences with Dr's. and some really good ones. I disagree with your blanket statement that they do not want to help us, it depends on the Doctor (which is really the person the Dr. is).

When I was flaring my GI called me to check on me himself a bunch of times and has worked very well w/my Kidney Doc. On the other side of the spectrum, I had/have edema and one Doc told me it was my shoes and sent me on my way..........turns out the edema is from kidney disease. We cannot educate ourselves on every single thing. For chronic illnesses we have more time to dedicate to learing about our disease, being our own advocates and it is a learning process. I have come a long way from walking out of that Dr's. office who told me it was my shoes and feeling like a complete idiot to the way I handle situations now.

So, I read your hypothesis and it makes sense to me. My question is; in your 14 years of research what are the alternatives we can use to keep us from popping pills and shoving things up our bums? I am open to try anything, i'll eat crabgrass and crickets if I have to. So what are the non-traditional ways to control UC?

Also, I challenge the, "Sheer Will" theory, when blood has spurted out from your bum 25 times a day are you saying that is only happening because we don't want it enough, for it to stop?
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 15mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 8/13/2008 10:25 AM (GMT -6)   
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
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 8/13/2008 10:44 AM (GMT -6)   
I hear you, ucwarrior, and I'm generally sympathetic.
 
A lot of causes come into play, but I think much of the problem boils down to medicine being one of that last few gatekeeper professions.  Transparency isn't a hallmark of that philosophy.
 
One word of advice, though.  The long paragraphs are hard to read and a touch manic. 

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/13/2008 11:02 AM (GMT -6)   
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.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Hans C
Regular Member


Date Joined Dec 2006
Total Posts : 89
   Posted 8/13/2008 11:05 AM (GMT -6)   
Maybe it wasn't the point of the post but I think most people would accept that there's a huge problem with how the medical profession treats patients. I don't think it's caused primarily by pharmaceuticals but by arrogance, complacency and the pressures of a high workload. As a patient I feel like a mechanical object. It's just complicating things and wasting time to assist a patient in understanding medical processes. 

ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 11:31 AM (GMT -6)   
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

ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 12:02 PM (GMT -6)   
Q, I will address the liver question of yours first. I'm no doctor nor am I a know-it all, I'm just a normal athlete who happens to have a passion for science so bear with me. I could be convinced with more medical evidence that your colitis could possiblly stem from your liver. I read an article a few years back that attributed some forms of UC to liver issues. I don't know a whole lot about the liver but I know its the traffic controller of everything you put in your body. It is also reputed for I think like 500 or so operations in the body. Lack of bile production to break down fats that can be irritating to colon. Also an overworked or sick liver can be overwhelmed by toxins to the point that sweat glands, kidneys and the colon can become inflammed from the constant bombardment of toxins and byproducts of metabolism.

If the sick liver cannot remove the harmful agents they can end up in the bloodstream and cause damage. Sometimes during a flare toxins can be reabsorbed into the bloodstream (leaky gut) and a cycle can become apparent. I probably told you stuff you already know but I'm no specialist. There can be so many different causes of UC pegging just one is difficult. The premise is the same though- ulceration of the lining of the colon whatever the cause: bacterial, viral, autoimmune, genetics. The theory above was just the bacterial hypothesis. I have thoughts on the others too but I got in so much mud on this one I don't think I will post the others unless requested to do so. I hope I answered your questions.

As far as acceptance, I strongly disagree. There was a time, yes, I didn't want to accept it. That was mostly in college when I wanted to pretend not to be sick so I could feel as normal as possible. I wanted to drink and party and date and have the college experience as well as my studies. Sometimes, however, sacrifices had to be made. I think I used food poisoning quite often during a flare in school. It was more acceptable to my friends and to me at the time. After some time though, I have grown a deep acceptance after finally realizing that it wasn't just gonna go away like a cold. I was going to have this until the day a cure is found. I suddenly wanted to be that guy. I've realized what I have developed my own set of thinking and I'm gonna run with it. I'm not saying it will happen overnight but I can dream can't I? Someone has to do it, why not my team? Mike Phelps did, now look at him go!
Mike

Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 8/13/2008 1:50 PM (GMT -6)   
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)

New Topic Locked Topic Printable Version
48 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, June 22, 2018 5:49 AM (GMT -6)
There are a total of 2,974,393 posts in 326,172 threads.
View Active Threads


Who's Online
This forum has 161250 registered members. Please welcome our newest member, MelvinFerry.
199 Guest(s), 4 Registered Member(s) are currently online.  Details
sharpcut, therearemiracles, amafi, Hoagie