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Alternative Medication vs Remicade

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Posted 4/11/2010 2:34 PM (GMT 0)
I was talking about the diet my doctor told me to follow when I left the hospital. I mean processed foods as opposed to whole foods. I think of Wonder bread as a processed food. I also give the disclaimer that I do what is right for MY body, so I am not judging what anyone else does. But the point I was trying to make was that my GI wanted me to follow a low residue diet because it was easier for HIM to deal with me that way - so it's up to me to make informed choices about my nutrition. I realize everyone here has a different diet because we all follow what is best for our individual selves. :)
Posted 4/11/2010 4:40 PM (GMT 0)
I know what you are saying wednesday, I am a bit hesitant to start the Remicade because it has been a month now since I had the CT scan with which my doctors are judging that the inflammation is very extensive and it is that CT scan which made them say they want to start the Remicade and Imuran. The Imuran I have already started. My only thing is that now that it has been a month that I have followed the principles of a macrobiotic diet and pretty much been completely pain free for a whole month, does that not count towards anything? Maybe waiting a few more weeks and having a colonoscopy or something to see if the inflammation has really reduced? Of course I still do understand what the doc said and a lot of people on the forum said that you can be symptom free even when your inflammation is extensive so I guess that might explain my current situation. Its hard to make these decisions.
Posted 4/14/2010 7:02 PM (GMT 0)

With my first major flair up  I was on prednisone for about 6-8 weeks and Humira for about 5 months.  I had a colonoscopy and was told I was in remission.  I stopped taking the Humira and worked with a naturopathic physician using diet and herbs to manage my condition.  Several months later, the crohn's came back, it took months to get it under control again, and the second flair up was MUCH worse than the first.  I am now on Cimzia because the humira didn't work the 2nd time around and I am now prednisone dependent.  Every time I try to taper my dose, the crohn's comes back.

I am a big fan of using diet and complementary/alternative medicine.  I stopped taking my humira because of fear of the side effects.  When I had my 2nd flair, it was so excruciating, I finally understood what my doctor meant by risks vs rewards.  Although I continue to use diet, vitamins, etc with success to help manage my symptoms, I have no intention of stopping my med's again.  I wish I wouldn't have stopped them the first time because now I am dependent on prednisone.

I am not trying to tell you what to do, just sharing my personal experiences.  Good luck!

Posted 4/15/2010 1:31 PM (GMT 0)
Wilder,

I am in 100% agreement with you. I believe the natural and western meds should be considered as complimentary of eachother. I found out the hard way too what happens when you don't use Crohns meds and had much the same results as you. Welcome to the forum by the way.

Hugs
Gail*Nanners*
Posted 5/17/2010 11:13 PM (GMT 0)
Well I got my first infusion of Remicade today, not really strictly following the principles of the Macrobiotic Diet anymore but in general just trying to eat healthy, fresh food, trying to avoid red meat, a lot of refined sugar,spices, fried food etc
Posted 5/18/2010 3:36 AM (GMT 0)
i agree that it's risky to go off meds, but it all depends on your disease. i think blanket statements saying you should stay on some sort of maintenance medication forever isn't necessarily logical. the risk benefit ratio has to be evaluated for yourself. many people have very severe disease and a diet isn't going to anything even if followed for a year straight. if you have the will, finances, time and support to follow a diet and you are getting results, go for it. do what you feel is right for you. by no means are these medications benign treatments. i started dieting less than a year after i was diagnosed (i.e. i didn't wait for the disease to smolder for years before going to diet). i've never been to the hospital for my disease and i consider it to be relatively mild compared to other's. I do agree that you should be on a medication initially to get you stabilized for a long while (probably a year or two) and then you can attempt to get off of it. I've met many many people who manage their disease without meds. I received my last infliximab infusion in april and am going to attempt to get along without it. i may eat my words, but we'll see!

I'd also like to respond to Nanner's post specifically. With all do respect, you are on one of the safest medications out there, asacol (which is great!). Remicade's side effect profile is quite a bit more concerning so you have to take that into consideration too. I used to be on asacol and would be happy to stay on that medication forever if it continued working for me. Now I'm on a drug that puts me at risk for demyelinating disease, lupus, lymphoma and secondary cancers. I also get constant muscle twitching from it that is extremely annoying and very concerning. It's a completely different risk benefit analysis. Just a thought . . .
Posted 5/18/2010 12:13 PM (GMT 0)
You may wish to read about the Specific Carbohydrate Diet (SCD). This is another approach that has worked for many. Unfortunatly for folks like us, many of the things in the diet you are doing are considered illegal on the SCD. So once again we are in the position of no clear answer and trying diffent approaches to see what works for you. I wish you good fortune. If you decide to stay with Macrobiotic can you please post how you are doing, I hope well. I would try anything if I knew it would work

David

 

Posted 5/18/2010 1:03 PM (GMT 0)
Hey JP yes I am maintained solely on Asacol, but if that stopped working I am not afraid to go onto stronger meds. I will take whatever me and my doctor think best. We have already discussed that if my disease should act up my next step is 6mp and I am in total agreement with it. Yes, I am blessed to be maintained on a mild med and grateful that so far nothing stronger has been needed. But as we all know with this disease things can change on a dime. JMHO
Posted 5/18/2010 1:10 PM (GMT 0)
I get what you're saying, and it makes sense from your perspective, but you must admit the disease doesn't come back in a significant way for some people who are dieting. For them, getting off medications was a good choice. This may be a minority of people who try diet, but still it's a choice to be made by the individual. I have cleared my decision with my doctor and she is supportive of this trial of going without meds as long as I stay on the diet.
Posted 5/18/2010 1:12 PM (GMT 0)
Well I am going to be honest with you, I wish you the best of luck, but like Tsitodawg said, I think we are going to see in time that you become symptomatic again. But I do hope I am wrong:)
Posted 5/18/2010 5:29 PM (GMT 0)
enteral nutrition?  What is it and how does it work? 
Posted 5/18/2010 5:54 PM (GMT 0)
I underatand what you are saying Nanners and tsito both but I also agree with jp in that looking at the side effects of Remicade are really really daunting, I guess they are rare though and hopefully the serious ones do not affect us, does anyone know the long term relationship of Remicade to the more serious side effects?....so for example would a person taking Remicade for 5 years be more likely to develop lymphoma than a person who took it for 1 year?
Posted 5/18/2010 5:54 PM (GMT 0)
Cleo 35,

Enteral nutrition is the temporary use of special liquid formulas (meal-replacement drinks) in place of regular food and beverages to induce remission, or alongside a regular diet to help maintain remission. It's an old treatment for Crohn's disease that is not much used today in the US, although it is still a standard treatment in Canada, Japan, and Europe. Advantages are the lack of side effects and the fact that it works very quickly (if it's going to work for you, you'll usually see improvement within the first 10 days). As to how it works, it has a powerful anti-inflammatory effect (can reduce levels of TNF alpha, reduce sed rate and C-reactive protein, etc.).

Posted 5/18/2010 7:13 PM (GMT 0)
Ouch, I am only 21, but yeah I know what you mean with the whole drug companies protecting themselves issue. I guess I have no choice but to hope for the best! My doc told me that my previous meds were not working for me and that this next step had to be taken and I thought it was best to listen to him based on his credentials and experience.
Posted 5/18/2010 9:00 PM (GMT 0)
Dawinner,

I would never, ever recommend to someone to abandon their meds.  But if you are determined to avoid meds then consider that the SCD diet is supposed to starve out your bad bacteria and nourish your good gut flora.  Perhaps your improvement with Flagyl (a very strong antibiotic) was a shortcut to step one, ridding the bad gut flora?  Then I would think that you need to continue with your diet to nourish you good gut flora by feeding them the right diet.  Also I would think it is crucial that you implant beneficial flora via probiotics while on Flagyl and every day afterwards to keep the bad guys from returning to your gut.

Daily probiotics are important because probiotics do not form permanent colonies within your digestive tract.  They only remain for a day or two but during that time they prevent bad flora from taking hold.

Continue with meds but you need to be very strict with your diet (junk food encourages bad flora) and take probiotics.   I am not an expert but this seems to work for me, but everyone is different.  Find what works for you.

 

Posted 5/18/2010 9:06 PM (GMT 0)
Writer, thanks for your reply. Is the liquid diet a special formula? Ensure?
Posted 5/18/2010 10:32 PM (GMT 0)
There are a variety of different products available. Ensure is one of them and could be a good start. Some people respond to one, some to others, so if it doesn't work, there are more specialized formulas available for medical supply companies.
Posted 5/19/2010 1:13 AM (GMT 0)
Babeinthewoods, I only took a 2 week course of Cipro and Flagyll because of a small abcess that I had developed, those 2 antibiotics apparently did the trick though because there are no signs of that abcess now.
Posted 5/19/2010 4:25 AM (GMT 0)
I was just diagnosed in Nov. 09.  No major symptoms...but as we know, a lack of symptoms does not mean the disease is not doing it's nasty work.  You asked if anyone was doing anything alternative, so that's what I'll respond to.  I started seeing a Naturopath 2 months after my diagnosis.  Before that, the week of my diagnosis, I started doing radical diet changes and have stuck to them for the past 6 months.  I have been on the Naturopath protocol of supplements and IV infusions since Jan 28.  A recent blood test has shown that my CRP levels and SED rate have both gone down dramatically.  I am looking forward to having another colonoscopy in November, 1 year after my diagnosis, to see what has happened.  My Naturopath has active Crohn's and has never taken a drug for it.  He treats many Crohn's patients.  We were just talking today about the Crohn's patients he treats, how long they've been able to maintain remission w/o major medical, and the fact that the results are backed by scopes and tests. 

Good for you for seeking information.  Someone said be your own doctor.  That is the best advice I can give.  You know what you are comfortable with, and how much you can do.  Keep being your own advocate, doing research, and making yourself heard to your doctor.

Posted 5/19/2010 4:37 AM (GMT 0)
Thank you for your post newfound. How bad was your Crohn's at the time you were diagnosed? What were your symptoms? How do you feel now? Have you not taken any conventional medicine whatsoever for your Crohn's?
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