Maintaining remission without drugs

I think it's great if it keeps you feeling good. I've tried to stop taking meds and I've had symptoms pop up almosmt immediately. I would love to be med free but I've tried diet andd supplements and neither did anything for me.

And I don't think it is a zero sum game. Our bodies are not suffering from a "chronic deficiency of conventional meds." Medications have been developed to address our bodies' atypical, or inappropriate, or ultimately-harmful-if-still-within-reasonable-bounds-of-normal-human-biology dysfunction.

I look at it this way. In the history of human evolution, many harmful genetic deviations have been eliminated simply because those unfortunate people who possessed them did not live to procreate. On the other hand, many genetic variations exist which permit procreation but do not necessarily permit long healthy lives. Ergo, Huntington's Chorea and other awful permutations. The genetics of Crohn's disease appear to be recessive, since they do not pop up in every generation.

Scientific understanding of human biology is improving daily. Many horrible, fatal illnesses can now be reversed by medication, surgery, etc. The "low hanging fruit" of deadly diseases has mostly been picked by medical researchers. Now scientists can focus on the more elusive, and probably less fatal, conditions that plague us. Things that won't necessarily result in an early death, but would certainly make life less pleasurable and probably less productive.

Do you NEED to take your medicine? The medicines for CD are not necessarily going to give you a longer life, but they will most probably give you a more enjoyable one, a life in which you can be productive and useful and share your wisdom gracefully with your children and grandchildren, enjoying the pleasure of their company and the company of your friends.

A lot of the research into drugs that make our lives better is done by profit motivated companies. Certainly their motives are to make money. Absolutely their advertising takes advantage of people who are in need of help, in fact maybe desparate for help. I think everyone would agree that our capitalist approach to solving these problems leaves patients vulnerable to situations which are not necessarily favorable to their health. On the other hand, government funding for this kind of research is not widely available and I don't think taxpayers would be happy to prioritize research into an illness that affects 2% of people over roads, bridges, air quality, water quality, secure borders, military readiness, etc. that affects 100% of citizens. There is no happy solution.

That's why I value forums like this so highly. We are conducting our own experiments with our own bodies with medications that will probably help us but may, rarely, hurt us. We are seeking information. We are the most biased people in the "room" of Crohn's researchers, because we know the problems intimately and we even know about other people's problems, because we read about them here. We are very motivated to feel better.

Babeinthewoods, you are welcome to do your experiment on your body and I will gladly read about it. But I don't need to read about drug safety trials, I already know the pharmaceutical companies want to make money by selling me drugs and I already know the FDA is not really able to manage all of it perfectly. I also know that I've probably had damage done to my body by my wacky autoimmune system and I'd prefer to slow that down, if not stop it entirely, so that I may live a happy life without pain, or with as little pain as I can manage. I will continue to take my meds and I might even up the ante by taking more aggressive meds as I grow weary of my knee and SI pain. And I will share my results with you, too.

The meds I've tried so far haven't done anything for me, and I'm not prepared to drastically change my diet or spend a fortune on seriously expensive supplements and probiotics.

So I'm both on no meds and eating exactly (albeit somewhat less of it) as I always have done. Probably not a great idea, but nothing seems to knock my disease into remission anyhow.

Rule 11. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes.

With all due respect I believe there has been a misunderstanding. I tried to link a 16 minute video indicating caveat emptor for prescription drugs. That we should be careful because not all drugs may be as safe as most would believe. Please note there are no political or religious views expounded here. Thanks.

*Sorry it is a political site and not allowed due to forum rules, please do not repost the link*

Post Edited By Moderator (Nanners) : 1/9/2011 12:23:38 PM (GMT-7)

Babe, I think diet can reduce symptoms and maybe even the disease, but I'm not convinced it's enough either (*maybe* in milder CD cases). The only way to check for sure though is to get a look inside where your CD is, and then let us know what is found. Most of us are advocates of trying diets and alternative methods and LOVE to hear about scope evidence.

I have been actively looking and researching diet and alternative methods since about 2003. There aren't enough to studies though, and many are conflicting. I even get confused about probiotics, based on my own experience and testimonies.

Besides, even diets have their side effects and can cause health problems. Ppl can respond differently to everything, drugs, diet, etc.

I can tell you that I had 3 inches of CD with a stricture that developed within 1 year of my last resection 5 years ago. After that, I changed my diet to a natural easy to digest with very little sugar, went on probiotics, digestive enzymes, and herbal teas and different remedies. I can tell you my CD has not gotten much longer than the three inches, but it is still active and I have to have a resection next month for the stricture. So I think diet, natural remedies, & meds (pentasa, pred & imuran.) has helped me too, but definitely not enough.

Hopefully after surgery, I'll have more success.

Best wishes!

Everyone is different. Some people will only need diet, some people will only need meds, some people will need diet & meds, and some people won't be helped by either.

For me, meds were never that great. For 13 years I took a whole host of meds, including biggies like 6MP, Imuran, Remicade, & Humira. The only meds that made me feel better were prednisone (which also wrecked my bones and left me susceptible to a horrible case of valley fever) and Humira, and even they didn't put me in remission. 6MP and Imuran both made me feel infinitely worse then the crohn's did. Therefore, my faith in meds is not that high.

I don't believe that we're doomed to have crohn's disease smoldering in our guts forever though. It's a matter of finding out what combo of treatments will keep it in check. It took me 13 years of trying everything under the sun, but I finally found my combo. For me, diet is key. I'm amazed at how it worked so well! Supplements help too. LDN is my insurance policy, but I don't really know why I stick with Pentasa, considering it did nothing for me for years. My GI is also convinced that diet is key for me. It's nice to have her on board .

Diet can treat the IBD itself as well. It did/does for me, as well as some other people I know. If it weren't for diet, I'd still be suffering from moderate to severe crohn's (it wavered between the two). As it is, my intestines are finally healed .

It would be incredibly inaccurate to not accept the value of diet in your treatment, but the same would be said about medication. We can not go out while on Remicade and eat junk food, grease, tons of sugar, and drink like a sailor and expect to go into remission. It takes a combo of medication, diet, and exercise to fight this disease. What really worries me personally is when I read about people going off their medications because of some of the stories they have read about here. Everyone's health situation is so different and to read a paragraph about some one on a medication that is flaring and decide that it is not effective could be dangerous. There are so many factors about why a medication is not working for that person.

I really don't think that anyone likes taking a lot of medication every day or getting infused with a chemotherapy(TNF inhibitor) to suppress your immune system. Unfortunately, these are the most effective methods so far and we have to take advantage of every tool that we can. Why not give yourself the best weapons and use diet and medication? Of course the stronger medications have side effects but so do all supplements and medications. Some have more than others but they all have risks and side effects. 5-ASA meds are really the starting medications for mild forms of the disease and will not control it if it gets to severe disease. Biologics and immunosuppressants have their place in our treatment. It is not at all that our bodies are deficient but more that we have an abundance of immune system. There are many supplements that will help bring it down to a normal level, but eventually you will come to the point that you need to use medication. I found out the hard way when I stopped taking my medications and it just about took my life. You may get 1 month or like Nanners you may get 20 years but Crohn's disease will always remind you that it never stopped working. Good luck with whatever you choose and I hope that you can learn from my mistakes and not from your own.

JP, there are also studies that show that 5asa can reduce the chance of recurrence after surgery. No way am I giving up my pentasa after my surgery.

My plan is to do diet, natural supplements, and medication, just like I do now, except my GI wants me to try a strict gluten free diet after surgery. I will not be doing SCD, though, because of all those nuts, but I will try the yogurt again after a couple of months recovery.

Pentasa may not have put you into remission but it has probably had a great part in keeping you there. A good diet can help make anyone feel better and even help induce a remission. It is the combo of medication and diet that is needed to make sure that you stay in remission. There is many people that go into a remission for no known reason but why make it harder on your body to remain in remission by not utilizing everything at your grasp? LDN is not one of the most conventional medications but it is a medication. It is still somewhat of a newer concept but it would not shock me to see it pick up popularity in the future.

I was shown to be in remission on with my last colonoscopy and the GI doc put me on no mainence meds. He doesnt prescribe asacol because he says it doesnt work. I was on it and It didnt work for me. If I was in a bad flare he was going to put me on remacade. I went into remission while not on meds. He told me to come back if I get sick again. I don't know the answer but everyone is different I guess.

JP I know for FACT that the Asacol is not having a placebo effect on me, because if I go off it, I get flare REAL quick. Multiple members on this very forum using either Pentasa or Asacol have found the same happens when they try to take these meds out of their med mixture. So post all the articles you like, I know for fact this med is keeping me healthy and not suffering with CD attacks all the time, so if it ain't broke I ain't fixin it! JMHO