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Natural Remission after 4 months

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Posted 1/2/2012 1:21 AM (GMT 0)
If I can maintain on meds in the lowest amount and least toxicity, so be it. The more power to me. I believe foods exacerbate flares or just cause digestive symptoms in the absence of flares.

But for me, flares aren't random incidents. They are associated with stress and when I'm flaring I lay off the broccoli and other roughage, spicy too. I also cut back the stress and sleep a lot and avoid exercise..

There seems to be an attitude in this thread that people that depend on meds are weak-willed or not disciplined enough to manage their disease naturally. I've thrown everything natural at this disease, from turmeric to VSL3, and the only thing that works is meds. Supplements, probiotics are icing on the cake, but I know I could drop them and it would have no effect on my flares.

The Asacol is doing it's job in the upper colon and the mesalamine enemas work like clockwork to bring a miniflare in the rectum under control. Barring a nonsurgical cure or possibly the loss of insurance, I expect to be on this regime the rest of my life. It gives me confidence in managing UC, and not feelings of dependency on the medical establishment.
Posted 1/2/2012 4:58 PM (GMT 0)
Of course food causes flares, food is medicine, food is everything. Why would you take any meds -- metamucil, probiotics etc ? They are food. Food effects the body and mind more powerfully than almost anything. Hell, watch Supersize Me!! One month on nothing but McDonald's almost killed the guy! (that would be food!!).
Posted 1/2/2012 5:05 PM (GMT 0)
You're talking extremes....and in general.

Yes, metamucil, probiotics are helpful in digestion and are probably considered food.

There are lots of things in food that can cause problems, and cause great stress on the body.

Common sense and balance seems to be a good thing.

q
Posted 1/2/2012 5:10 PM (GMT 0)
i don't see the point you all jump on quincy's beliefs...

she has find her equilibrium point more or less. i do not agree with her regarding the long term relation between food and IBD (the food is the one who makes the bowel flora, and if i would not have seen my joints react to foods other than those containing gluten...), but if she can handle her UC with meds (and read carrefully - not so toxic meds...) and live a nice life then i have no problem with her.

she is right - common sense and balance is a good thing. but there are different types of balances and different aproaches to common sense :) so let's agree to dissagree..
Posted 1/2/2012 5:13 PM (GMT 0)

journey2health said...
There seems to be an attitude in this thread that people that depend on meds are weak-willed

Exactly the opposite. I stated that medical science has proven our intestinal flora is changed and different than a crohns signature and both of those different than someone who has neither disease. Therefore our intestinal resistance to barrier upset is weaker. I have also said there are 3 sub groups 1) Do not respond well to meds but respond to removing inflammatory foods and eating foods that heal 2) This group responds well to medication 3 ) This group does not seem to respond to anything and is always battling some level of a flare.

It is not black and white, I have tried to organize it into 3 shades of grey.

Quincy, I find it odd that you think I am running around with some mild inflammation - your not my doctor and have no basis for your claim. I have no symptoms, barely get 4 hours of sleep per night workout daily and am in terrific shape. Choosing foods that heal is not "micromanaging" anything. For all the right reasons I choose foods that heal. I also think anyone of us on a over-processed modern sugar diet would feed the bad bacteria until they eventually flared. Very odd that you think that is not the case. But what I find most odd is that you think your regimin of Asacol 3 @ 2x daily Salofalk enema and Bentyl is not micro managing your condition and that your gut is 'strong'. Sounds like it takes a lot of maintenance to me and some of it I would consider unpleasant.

Eating healing food is natural that is all I can say. Sometimes we settle onto a pet view and have to distort other information to keep our view making sense.
Posted 1/2/2012 5:47 PM (GMT 0)
Although I agree with and commend everyone who makes lasting and healthy dietary changes, I have to say I am in the camp that does not see the food/disease connection. There are plenty of people who eat junk food day and night and never get UC. As far as I understand it, UC is an autoimmune disease, pure and simple. I try to eat soothing foods like salmon during a flare, but I've never been able to make a real link between flare and diet. Stress seems to exacerbate my flares, but sometimes I've stayed in remission during periods of extreme stress, so I'm not so sure about that, either.

I hate being on meds and have avoided them for the most part since I first got diagnosed, but now I'm humbled into a maintenance regime. I hate the side effects and I hate the dependency on pharmaceuticals, but I'm also grateful for the normalcy they've bought me.

I admire anyone who is doing whatever they need to do to take charge of their health in a way that works for them. I think that's what we're all after.
Posted 1/2/2012 6:02 PM (GMT 0)
This food debate really isn't a debate at all. For some people food is a main trigger, I have been keeping a journal for 10 years, and whenever I eat the wrong diet for to long, I flair,period. Weather someone else dose or not, thats not for me to judge. Me..I flair from food, stress, and seasonal changes. I have 10 years of proof. I have a friend with the same colitis as I do (Procto), and he eats anything he wants and never has a problem. A one size fits all with this disease is nonexistent. Food will constipate me right away which leads me to a flair, always has anyway. So for me food is a huge factor in dealing with my colitis.

I dealt with this illness holistically for 9 years until a flair in april almost killed me, now Im on 4200mgs of asacol a day. I will eat Sh__ if It keeps me from ever getting as bad as it did in april. Big Pharma saved my life, but I still feel the holistic approach works if you work it...For some...And for some of us it works for a time, then changes up on us...

Its a rough way to live and all the info out here is important, but no one has all the answers to this riddle. And Im very leary of some of the direct medical directives I see up here emanating from some of the members. Sharing experiences is a wealth of information and support for all of us, but for me, as a musician to give direct medical advice to someone is just plain crazy...and dangerous... Just my opinion. But sharing our experience is a blessing...Best of luck to all of us. I have found a wealth of info up here sand thank you all Many blessings, Jeff
Posted 1/2/2012 7:55 PM (GMT 0)
To me, Food has everything to do with how our bodies function. And some people can abuse their bodies with food, and over time cause diseases. Really, it shouldn't even be a question that food can be a cause for any disease. Do some research, what can lead to diabetes, high cholesterol, heart attacks, heart disease and blocked arteries? Eating terrible foods and not getting enough nutrition.

I learned I can't always be looking for some mysterious meaning in this disease to call blame for, when the obvious is right infront of my face. I have to change my diet and accept that life will always be an uphill climb and that even medication isn't going to suddenly help me reach the top of the mountain and stay there.

I agree with others who take medication, we're all on it, but I question how some people would just rather stay at their current dosages and call it quits assuming they've reached an end-safety net. For me, i want to try to help myself progress off of these medications, even if it takes me years, that's just my goal. I had enough experience with being under the influence in college, I dont need any more time after.

Post Edited (stereofidelic89) : 1/3/2012 6:01:58 PM (GMT-7)

Posted 1/3/2012 2:05 AM (GMT 0)
It never seems to be food with me. It is always stress related. I experience something I think I have dealt with, and I apparently have only buried it in my subconscious and I'll flare. I have a further complicating factor, a rectocele, that causes involuntary expulsion of fecal matter. My colon doesn't cramp, it's all in my rectum. It makes me wish for childbirth in place of a bowel movement. We are unique beings and I would never question someone else's self diagnosis.
Posted 1/3/2012 1:58 PM (GMT 0)
I concur with journey2health.
No one wants to take meds as a preference, but after many years of fighting UC with little success, (the SCD diet, fasting, macrobiotics, juicing, etc) believe me, I've tried them all, I finally gave in and went on imuran, asacol and pred when needed.
What was striking to me is that flares would happen when there was no food being ingested, which proved to me that food is a side issue. Yes, a spicy hot burrito will likely kill me now, but most of what I eat has no effect on my UC.
Therefore, for me anyway, I've struck a balance of lowest possible dose meds. dietary changes and exercise which has worked well for me.
What works for one may not work for another, but information is power.
Posted 1/3/2012 3:31 PM (GMT 0)
directly food cannot cause but food symptoms...

but food is the one who will shape our gut flora - it depends on what we eat what kind of bacterial strains will "flower" in our colon...

on the long run - at least 4 months - there are studies who show that a bowel flora could change depending on what we eat.

we can accept that there are probiotics (good bacteria strains) that help our UC but we deny the role of the primary factor that shapes our type&numbers of our residing gut bacterias ? it seems illogic to me.

there's more and more data who links bacterias as a trigger for UC (off course, it will happend only on favorable genetic ground and probably combined also with other factors).

we don't know how, we don't know how the chain of causality works, but it's a fact that there's people there who can control (and i say control and not heal) this disease with diet. so it must be something there.

it's also a fact that there's people who cannot control it with diet - maybe the trigger is elsewhere? maybe the bacterial trigger is nor removed or minimised? maybe the immune system has other rules for them (let's think about those with fulminant UC - no matter the trigger or the medication they will not respond to almost anything).

we're still playing in the dark and i guess we will do it for a long time.
i am happy for those who can control their problems with diet change - strange the diet change involves giving up those processed foods we all say they're unhealthy.... i am sad for those who tried and did not had any results. i do not call into question their bona fides, i am sure they did their best.

on the other hand i pitty those who will not do anything for themselves and will not change anything in their lives in order to get control - no matter what the means of this "control" are.


P.S.
I am enjoying this thread, it's a far more quiter debate than the ones i've seen in this forum regarding this subject :) we all share what we know and compare.
Posted 1/3/2012 4:43 PM (GMT 0)

Alinus said...
i don't see the point you all jump on quincy's beliefs...

No Alinus she is not right and no your are not right either.

Lets try sticking to the facts and dispense the distortions.

Fact : This thread is about "Natural Remission after 4 months"
Fact : Quincy came in here to argue and start trouble by attacking our beliefs, no intention of moving the concept forward in any way
Fact : She ridiculed my approach to health and fabricated that I have less than optimal health in my drug free remission
Fact : You come along as always happens and spin my defense as offense claiming I jumped on her views
Fact : Every time I try to organize the group into categories by what we respond to it is ignored by people that want conflict, so rather than agree that some of us respond to meds and another group does not, it becomes a dumbed down black and white issue where one side has to be right and calls the other side wrong. Then begins the claim to injury, that their methods and their views were 'attacked'

Utter nonsense. You either want to get along and have an open minded approach to move our understanding forward or you have a personal agenda.

It would be nice if this site were more about comparing notes and working down your respective categories path instead of going into other folks category threads for sport and being disruptive. Anyone can do that, materially moving our understanding forward takes restraint at times, research and collaboration. Let others discuss their method without having to loudly announce your disapproval of it it. It is legitimate with or without the approval of those not in agreement with the same methods you yourself employ.
Posted 1/3/2012 5:06 PM (GMT 0)
yea quincy has jumped all over me numerous times, calling me "bitter" etc
BUT, I choose to ignore haters and move forward. We can spread vital information here on this forum and help others by sharing what works.

Also, many of us here are sick and not doing well, so the attacks and attitude are perhaps just the result of all that.
I think if we all just try to stick to the matter at hand (our UC) and sharing what we can, the abusers and haters will just fade to the background.
Wishing better health to all of you in this new year:)
Posted 1/3/2012 5:12 PM (GMT 0)
I think that no matter where you go, there is always going to be the black or white comparison - right or wrong. It's human nature unfortunately. Lets get this thread back on track and lets avoid the flaming okay?

I think this is an important thread so I would hate to have to lock it.
Posted 1/3/2012 5:21 PM (GMT 0)

Red_34 said...
I think that no matter where you go, there is always going to be the black or white comparison - right or wrong. It's human nature unfortunately.

i guess we humans are also the ones who invented greys :)

don't lock it, let's wait for the greys. it's a forum of discussion in the end. so in a debate there has to be some disagreement. unless it does not pass some line why should you lock it up? :)

aguywithuc said...
Utter nonsense. You either want to get along and have an open minded approach to move our understanding forward or you have a personal agenda.

i don't get it ?!
Posted 1/3/2012 5:45 PM (GMT 0)
I agree with Red. Once people feel that they are being insulted by other members, it has crossed the line. Let's try to keep this informational, no reason to insult or flame others.
Posted 1/3/2012 7:58 PM (GMT 0)
sigh....it's always the same ones flaming as well about disagreeing with the concept that food causes/doesn't cause flares.

I say it doesn't.....that's not going to FORCE anyone to not follow what they believe.

But to say those on meds are doing it wrong....un, not nice.
q
Posted 1/4/2012 12:08 AM (GMT 0)
As a human with ulcerative colitis, I believed my first trigger for my first flare, besides diagnosis came from chipotle sauce on a sub from subway. Anyone that has seen South Park knows why chipotleaway exists (http://www.youtube.com/watch?v=8XNOiZfcNz0&feature=related)

The solution to this flare was doubling my Lialda to 2 2x a day, the max dose. After about a week of LowRes and this new dosage I was back in remission.

8 Months later, another flare was brought on by a broken heart. I had my heart broken, moved back to college with different roomates, ate some ramen noodles, and was back in a flare. Trying to get over my lost-love was rough... This time I could not double my Lialda (@ max dosage), so I stuck to the lowres diet. I was miserable. In college, heartbroken, flaring it was the worst months of my life. Doc told me to introduce hydrocort enemas for every night for 1 month. I was skeptical at first, but lo and behold he was right. After the month of enemas I was back in remission.

After this flare, was the first time I started trying to change my diet to avoid future flares and keep my body healthy. I "tried" to eat healthy. Well balanced meals, using soy-based dairy alternatives, and gluten free if possible. However around this time my colitis grew meaner and reacted nastily very quickly. I have been in and out of flares for the past year, experiencing a month at most of remission with weeks in between of small to moderate flares with using hydrocort enemas to bring on the remission.

Now, like the TC, I have begun to implement radical diet changes to curb my flares, such as SCD and Jordan Rubens 'Guts and Glory Program' without using nightly enemas. My results have been surprisingly phenomenal. Both plans have similar outcomes and goals: Aid the body and calm the disease by consuming foods that are easy to digest and are nourishing for the body, specifically the colon. Eventually you will be off all medications, but living these diets for quite a while. The hard part is slowly adding foods back in. This sets me back to step 1 everytime I feel. This is where I am right now, but I know this works for me so I am giving it another shot.

I believe diet works. There are colonoscopies that prove that the disease has left the body if on the SCD for a lengthy amount of time. I am also proof, in just 2 weeks, I have gone from liquid Bl D 8x a day, to 1 solid BM a day through strict diets. I believe meds work, people experience remissions from 1 week to 11 years. Like my initial flares, upping meds put me back in remission.

I strongly believe I will be on a diet that will land me in a med-free remission for a large portion of my life. And I am working every moment of my life towards that goal that right now.
Posted 1/4/2012 12:59 AM (GMT 0)
mindoverbutter,

I have begun to implement radical diet changes to curb my flares, such as SCD and Jordan Rubens 'Guts and Glory Program' without using nightly enemas. My results have been surprisingly phenomenal.

That's great. I am not familiar with Rubens' program.

I too tried traditional meds, however they didn't work. So I started my own thing SCD now Paleo, adding all sorts of supplements, LDN, and yes it works great.

I am not surprised by your phenomenal results.

Kudos to you!

Posted 1/4/2012 2:45 AM (GMT 0)
Well done you must be so happy and relieved, remission is a great place to be. 

cheers mum of 3

Posted 1/4/2012 6:08 AM (GMT 0)
@InSoFla,

I think JR was bigger a couple of years ago when his Makers Diet book came out. He gets a lot of crap because the supplements he sells are from his company that he owns! But also, the dude has walked the walk. If you read any of his books he tells this insane true story about how terrible his Crohns was and how it cured it through his program. I have to say, it is tough, but just about any amount of time is worth putting in trying to heal a lifelong illness.

Do you have email?
Posted 1/4/2012 8:00 AM (GMT 0)
I don't think food or stress are causes. They might be aggravators for some. Sometimes medication is the best option. I know for example if I lower my anti-depressants my thoughts get distorted therefore I am happy to remain on that medication for life. MY diagnosis is up in the air as far as UC is concerned at the moment but if there is medication that helps and doesn't have bad side effects I'll be happy to take it along with being sensible about foods etc
Posted 1/4/2012 8:13 AM (GMT 0)
Stereo and ageywithuc

you are both inspirational and I have enjoyed reading, I agree with the diet-wise it is also working for me and we have a 10 year old, 8 year old and 4 year old I dont have time to be sick. I'm a mother during the day and work nights stocking shelves which keeps me fit and gives me consistant exercise. I do not wish to go back on the meds I really dislike enemas and they do nothing for your sex life. I could not imagine taking medication for the rest of my life if it comes back to a diet choice. Excuse my ignorance for not understanding the sub-groups of different triggers but makes sense as I remember going to the toilet 30+ times a day, no control it was terribly hard to function. The diet has allowed normal functions to be restored and harmony within. I dont understand why anyone would not want this.

regards mum of 3
Posted 1/4/2012 1:42 PM (GMT 0)
Would love to share resources and info through this forum vs email.
Posted 1/4/2012 3:42 PM (GMT 0)

s_morgana said...
I don't think food or stress are causes. They might be aggravators for some. Sometimes medication is the best option. I know for example if I lower my anti-depressants my thoughts get distorted therefore I am happy to remain on that medication for life. MY diagnosis is up in the air as far as UC is concerned at the moment but if there is medication that helps and doesn't have bad side effects I'll be happy to take it along with being sensible about foods etc

I'm not judging at all im just curious, you say you've tried getting off your anti-depressants and felt that your thoughts get distorted, but have you thought about giving it another chance? And looking for ways/means of help to cope with the withdrawal that comes when getting off medication? I'm just interested in understanding more about why you would want to stay on the drug for the rest of your life.
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