Alternative therapies? Stopping medication

Hi guys! I'm new to the HealingWell forum and I just wanted to get some opinions on what other 'crohnies' have to say about stopping medication and perhaps taking up alternative therapies?

I was diagnosed in 2006 and had surgery in 2007 (It got pretty bad). I have been on Azazan (azathioprine) ever since.
I haven't had too many problems either, just a flare here and there.

I have been doing a lot of reading and its safe to say all the side effects of the drugs scared me and I decided to stop my medication (plus I was diagnosed with Endometriosis- denied medication for that as well).

I saw my gastro doctor today and told him that I had stopped about a month ago. He wasn't too happy about the situation but nonetheless, it's my decision.

I have been researching alternative therapies from different books and websites and was curious to see if anyone has any experience with stopping medication?

I have changed my diet to all organic and I'm starting to exercise regularly (which seems to improve symptoms).

I guess you can say I was inspired to be medication free from a book I read, which was written by a man with crohn's.

Any thoughts? Comments? I'm all ears

I cannot advise you on whether to remain or go off medication, but I will say that most veterans of this disease monitor their diet whether they are on meds or not. Sooner or later you will probably find that certain foods seem to trigger symptoms. The usual suspects are gluten and/or dairy, but they could be anything from plums to shellfish. Trial and error because everyone is different.

Many find that some supplements can be helpful. Check out our signatures, some of the most popular are probiotics and fish oil. For example:

www.drhoffman.com/page.cfm/169
Thirty-two patients with Crohn's disease in clinical remission were randomly assigned to receive one of the following for 6 months: 1) mesalamine (1 g 3 times per day) or 2) mesalamine (1 g 2 times per day) plus Saccharomyces boulardii (1 g in the morning). Clinical relapse, defined as a Crohn's disease activity index greater than 150 with an increase of 100 points over the baseline value for more than 2 weeks, occurred in 6 of 16 patients (37.5%) receiving mesalamine alone and in 1 of 16 patients (6.25%) receiving combination therapy

Well....Everyone with Crohn's that I know who have stopped medication used to rub it in my face that they felt "SO GOOD!" & I was stupid for not dropping all medication. Well, when they ended up having their whole colon removed & wanted sympathy I felt like saying "I FEEL SO GOOD! & I HAVE A COLON TOO!" but that would've been too harsh.

It's not that hard to take maintance meds & add alternative therapies when you're in remission. Why not get the best of both worlds?! I can understand wanting to drop all meds but it's just not ethical. I know that adding vitamins/supplements have helped my hair not fall out as much and helped my nails grow stronger.

It's ultimately you're choice. I wish you the best!

Yes, prevention is everything. And by the way, keepingthefaith, awesome awesome response.

You stopped your azathioprine - have you tried any of the other typical Crohn's meds (5-ASAs? biologics?). If you stay off your meds for long you'll undoubtedly end up in another flare. I assume that you had a bowel resection and lost some of your small bowel - you are probably at increased risk for obstructions at that site. And if you have endometriosis, your risk for pelvic adhesions is even worse than it would be for a "regular" Crohn's patient.

So what do you mean that you were refused meds for endo? Or do you mean that you refused to take any meds? Was your endo diagnosed via pelvic laparoscopy? How bad was it? What meds were offered? Do you currently have children or are you planning to have children?

I understand that it really sucks to have a chronic illness and to be faced with taking meds for the rest of your life. But honestly, if you get to a good remission you will be able to perhaps switch your meds to something less "risky," or take less of your meds to maintain your remission - lots of options out there.

There is some limited data that the Specific Carbohydrate Diet is effective at maintaining remission for Crohn's patients, but I think that data is extremely limited.

I think if you can get into a long term remission (3-5 years depending on the GI) and it's confirmed endoscopically some GIs will have wean you off of your maintenance meds or move you to a "lower level" of meds (in your case ASAs). I don't know. I know people who have refused meds from the start and found their own way successfully and those who have tried meds unsuccessfully and those who are in long term medically induced remission. It's no one's job to tell you what to do, just research the risks of the meds vs the risks of the disease uncontrolled and factor in QOL issues.

Xtina, if you would like to have children some day, I highly recommend you treat the endo and the Crohn's. The best way to treat your endo is, of course, to get pregnant, but assuming you're not ready for that please please please listen to your OB/Gyn. If you let that endo continue growing in your pelvis you may end up with pelvic adhesions, scarred tubes and perhaps damaged ovaries, and your fertility will be severely compromised.

The same is true for your Crohn's. If you do end up with an obstruction or worse, a fistula, you can cause pelvic adhesions and scarring that may damage your bowels AND your reproductive organs.

I'm sorry that we have this chronic illness and have to deal with DRs and meds to stay healthy. It is not something I'd wish on anyone. But I feel lucky that there are meds out there to help me. I think you can get help from many of the different drug manufacturers if you'd like to try one of the 5-ASAs. Some of them are also available as generics, but they might not work the same or might give you bad side effects. Talk to your DR.

And by all means, look into the dietary choices people are making, you might find something helpful there.

All I have to say is THANK YOU ALL. This advise has woken me up a bit.
I don't know anyone personally with Crohn's and my area isn't a big city so my knowledge is limited. But hearing all the advice has made me think a little bit more.
I found a support group that meets every other month. I plan on attending that so I can educate myself more. Plus knowing there are other people out there with Crohn's, makes it a bit easier to know that I/we aren't alone.
I didn't realize the complications I could cause later in life!

Thanks again all =)

I have been on an "alternative" medication for three years now, and I'm getting superb results. I posted my experience here:

https://www.healingwell.com/community/default.aspx?f=17&m=1385214

My post generated some initial interest, but I don't think that anyone followed through. So I think I'm the only one on this forum who is using lingzhi.

I have two other friends with inflammatory-type diseases (not Crohn's) and they are reporting excellent results too. That doesn't mean lingzhi cures everything, but I'm convinced of its usefulness at controlling inflammation, which is what causes most of the misery in Crohn's.

If I were not using lingzhi, I'd consider trying Helminthic therapy (worms), but since I'm getting good results now, I won't tamper with success. But if you want to read up on the worm thing, then take a look:

http://en.wikipedia.org/wiki/Helminthic_therapy

I agree with the others that you need to do some type of maintenance, even if you feel fine now. The inflammation continues to do its slow damage, even when you're not aware of it, and once the pain starts you've got lots of accumulated intestinal scar tissue (and possible fistulas) that can only be removed by surgery.

best regards,
Robert