Has anyone ever gone into remission, I mean a real remission?

I was just reading yesterday on the history of prednisone,back in the 1940's the doc's made the connection that pregnant women often got rid of their arthritis symptoms while pregnant,they probably
knew this before but did not make the connection. Anyway they thought hormones, then they started
looking and found cortisol, then they made pred which was many times stronger.
So a clue to this whole mess might be something that disrupts hormones. Not sure what that might
have been in the early 20th century,1920 and prior,or is it something that disrupts gut bacteria,which messes with hormones. Back in late 19th early 20th century the fix for arthritis was believed to be colectomy.
That is why I am always looking at the history of IBD,something from the past might pop out.

So now we believe the disease has some genetic component, and some environmental component.
What was around in 1900 is not necessarily around today perhaps.
But at any rate I believe it is possibly, multiple time varying environmental factors,or could even
be the lack of exposure and proper training of the immune system to farm animals and dirt.
As a kid we had dogs,and I got sick enough,so I would think my immune system got somewhat trained.
Dr-A I have been thinking on this for 33 years now,still no answers.
Old Mike

Post Edited (Old Mike) : 10/30/2013 10:27:58 AM (GMT-6)

gary, say something new once in a while - yes, we all know that a cure has not been found -

NO.

The poop never returned to as it was in the past and that is an indication for me, I am not in pre-UC state. I don't take into account other external look and feel. IMHO, whats inside counts..

Gary, this is a nice post. I have to individually address each paragraph of what you said.

garylouisville said...
Stealth: I actually agree with much of what you said in that post, surprisingly. However I would like to comment on some of your thoughts (some not necessarily related to this particular post). Most medical professionals agree that UC is an autoimmune disease where, for some unknown reason, your body starts to attack itself. Now I understand that not all agree with this but most medical professionals do. This is why immunosuppressive drugs often work, because they weaken or stop our body's attack on itself. The root cause of this is totally unknown and you would have a very hard time indeed finding any medical professionals who would say that this immune system malfunction was brought on by improper diet, nutrition, or unhealthy living. That's not to say that it didn't have a role in some, but not necessarily many.

The current medical paradigm on treating autoimmune disease is better than a non-treatment approach, but it's ultimately misguided and fails as a long term solution. We've spent many resources on finding the ultimate "cure" for things like cancer and UC, but little progress has been made. Cancer rates haven't budged and UC rates are increasing worldwide. These are wasted resources that should be going elsewhere, but aren't. Inflammation is there for a reason and we'd be dead without it. It's also a healthy response to an unhealthy process going on in the body. Treating it as the enemy is not the answer. Peter Attia, a disgruntled doctor and founder of NuSi (a non-profit research organization exploring the diet-disease link), said it the best in his TED talk: if someone bumps his foot against the table and it swells up, why treat the swelling as the cause. Why not just tell someone to stop bumping their foot against the table leg? His research is mainly on diabetes and insulin resistance, but the same thing applies to any disease.

garylouisville said...
Since medical science has no idea what the real root cause is then all they are left to do is attempt treating symptoms only. I don't thing anyone anywhere would disagree that we need to find the root cause as the way we treat now leads to the problems and troubles you identify in your post. The fact that so many diametrically opposed diet plans and lifestyle changes work in some individuals is further proof that the real root cause remains elusive. It would be nice if it were discovered that eliminating all red meats would cure everyone with UC, or going Paleo would cure everyone with UC, or eliminating all gluten would cure everyone with UC, or that all everyone had to do to cure their UC is to eat spinach and sunflower seeds.

I don't think we can question disease uncertainty anymore. The hygienic hypothesis is slowly gaining steam because we know that bacteria are essential to immune function. I would have agreed with you 10 years ago, but it's a different world now. With the advent of data modeling and better scientific techniques, we have newer and more efficient methods of analyzing data. We can make far stronger correlations. We have epidemiological data, we have cohorts, and a whole slew of information to go on. The research on food as a perpetrator in disease is there. We know that certain ingredients are harmful and should be avoided, but aren't. We now know that saturated fats and cholesterol from pastured animals are protective of autoimmune disease, but doctors still prescribe low-fat, high carb diets based on flawed and antiquated science. The research and data are out there - it's how people interpret them. There's going to be a change in medicine, but it's going to take a while to catch on. Until then, we'll all be suckers for pharmaceutical companies.

garylouisville said...
I'm not sure I know what you meant in saying that "it's very important to work with doctors that know what they are doing" because in reality, nobody knows the root cause of UC, not the medical professionals, not Naturopaths, not Chiropractors, not Holistic doctors, nobody. So, in essence, none of them knows what they are doing so all they are left to do is treat symptoms by prescribing various different meds or med combinations with no hope of actually curing us.

A single root cause is always difficult to pinpoint. Most causes are multifaceted, but there are efficient techniques out there. That's why a doctor who takes a multifaceted approach to solving problems is essential for treatment. Stool analysis will reveal a bacterial imbalance and tell you if there's an overgrowth of something. There are blood markers like ammonia, CRP and lipids that determine the level of inflammation in the body. A good specialist who looks at all these aspects is crucial. Knowing what I know now, I would have never opted for some of the useless treatments that were suggested by conventional GIs. There are answers, but it takes a lot of hard work, time and money. Many people don't have the resources so they consider it a lost cause. I do think diets like GAPS, Paleo and SCD are starting points for treating any disease.

Post Edited (StealthGuardian) : 10/30/2013 9:16:57 AM (GMT-6)

nah, I can't be bothered to ignore you. I just don't see how your remarks are even remotely related to the topic of the thread. You tend to just disagree with whatever has been said. Jump all over posters, etc. Like you just did with me- What? Where? How? Settle down.

soystud, I generally like you, but I do have to agree that it's a little old to read the constant nitpicking at gary. I don't want to put you on ignore because I think you give good advice, but it is pretty annoying.

Diagnosed in 2007, after a one week long flare I was in "remission" for 3 years on a 2.4 dose of Lialda. That means normal solid stools, every day, once or twice a day with regularity. Eating and drinking as much as I wanted, everything I wanted (other than lactose). Didn't have a scope after diagnosis so I don't know what the inflammation was like but I felt just as normal as I always had.

Since then one flare for about a few weeks a year treated with mesalamine enemas, with full remission in between and then 2.4 dose of Lialda to maintain. Same stuff: normal solid stools, normal digestion, eating anything I want. As a person of South Asian descent I tend to eat very oily and spicy foods on a regular/daily basis, flare or remission, and it doesn't affect my disease at all, so I guess it really can't get much better than that.

As of right now had a pretty bad flare, had to raise my meds, but currently looking close to remission. Not yet, but soon. Waiting for my first solid stool to celebrate ;)

So, yeah, I think it's definitely possible. People have experienced it. But like with everything about UC, it probably doesn't apply to everyone unfortunately.

I thought I knew what the definition of remission was until I looked it up. Apparently it is cured but return is expected. No disease activity at all. My last GI actually insisted that I reach that point or I would get a C-scope every 6 months. I asked him what he would change with that information and he was silent for a minute then told me I would die of cancer if I didn't. When I left out of the corner of my eye I saw him throw his hands up in the air to his nurse and MD partner like a used car salesman that just blew it. 6 months later he left the practice and state. He's a medical professor now.

I don't think I ever had that and I don't want to make that my objective. I will take no effect on my quality of life. I think that is the medical guideline and the best most people can expect.

I don't use the remission word unless I'm asked by someone....but I'll say yes, I'm in a normal state with the 5ASA oral/rectal meds I use for treatment/maintenance.

I also don't give a rat's arse whether others deem me not as such....I have happy poops.    They're normal, regular that I think are helped by the intake of fibre supplements.

oh, and let me add that I eat whatever I darn well please....but that doesn't mean I eat everything that's crap or absolutely perfect in others' eyes.

Soy, you're acting the same as beatUC was to me, and it's immature and disrespectful behaviour for a member to harass others. So, knock it off already. We all have to grow up....gee, look how far I've come over the past 10 years ....I've been very straight forward, but I've never harassed anyone.

q

Do you credit the diet entirely, or do you think the FT had something to do with her remission?

Maybe we're confused about "cure" and "remission." "Cure" means the disease or condition is gone, kaput, and the body physiology is back to normal without ongoing treatment. "Remission" means that the more normal physiological state is maintained by treatment, but if treatment stops the condition will sooner or later reappear. (Barring spontaneous cures, which do happen with all diseases, but are more rare than hen's teeth.)

To me, remission is being able to go about my daily life without pain or worry about where every bathroom on the planet is. After nearly six years of constant flaring, it's hard for me to consider any blip that lasts less than a month as a flare. A couple of days is just a blip to me.

I've been in remission for years at a time. That is: taking medication, 1-2 normal BMs a day, no blood, no real urgency, eating whatever and tolerating it like a non-sick person. Keep in mind, patients with IBD often experience IBS-like symptoms in remission.

Soystud- Every scholarly article I can find that discusses outcomes of non-compliance with medication states that clinical outcome is worse when patients don't take their medication regularly. So no, Mr. fact guy, it IS actually a fact. And statistics are the only way to figure out if data means anything. Anecdote is not valuable in assessing the disease as a whole.

http://onlinelibrary.wiley.com/doi/10.1002/ibd.20189/pdf

"Nonadherent patients were more likely to be chronically active or in relapse (tau=0.212;P=0.002)."

http://europepmc.org/abstract/MED/1634054/reload=0;jsessionid=h50g8OxXdmaRZg5V1JC1.30

"The cumulative relapse rates were 12% in the 5-ASA group and 22% in the placebo group at 3 months [95% confidence interval (CI) for the difference, -4 to 24]; 28% and 41%, respectively, at 6 months (95% CI, -4 to 30); and 34% and 55%, respectively, at 12 months (95% CI, 3-39; P = 0.02, log rank test)."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744179/

"Patients who were non- adherent with medication had a greater risk of recurrence than adherent patients (OR: 5.5, 95% CI: 2.3-13)."

I do take maintenance meds but I was in remission for 10 years. I would call it a 'real' remission as I felt totally normal. I did have IBS symptoms though during that time. But I was in remission from my UC. Normal stools, ate normal (other than things I've learned upset my IBS), didn't think about my illness. After awhile taking the meds just became routine, like taking vitamins.  I am hoping I am going back into a real remission now.