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Miralax alternatives and getting off of Imuran

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Ulcerative Colitis
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Posted 8/12/2019 1:29 AM (GMT -5)
Hi everyone, is there anyone that has taken miralax on a regular basis and found a good natural alternative to keep C far far away. My GI has always told me to stay on it since it works well for me but I have to wonder about the long term affects of taking it daily. I tried stool softeners last year but they didn't really help and then I went back on miralax. Has anyone tried prunes or something else natural that works well for them... please let me know. I have become dependent on miralax and not sure this is the right path..

Also, at my last follow up appointment my GI mentioned trying to get me to only take Canasa and get me off of Imuran but I told him that I'm very hesitant since I had some difficulty getting into remission ( had to take steroid enemas for a while after liada / mesalamine enemas didn't work) and really don't want to mess anything up. He said we would discuss it again at the next appointment which is coming up in Oct. I don't like the idea of staying on Imuran long term either but am worried about a flare if I try to get off of it.. the doc told me that about 50% patients flare when they stop these meds so it's a risk I would take. I have been in remission for a few years now with no flare ups. Have any of you stopped taking imuran and been successful.. thanks.
Posted 8/12/2019 8:52 AM (GMT -5)
Only on suppositories.....not on oral mesalamine?

What mesalamine enemas exactly including dosage were you on, and how long on them?

Add a fibre supplement such as metamucil capsules with meals, and probiotics.

q
Posted 8/12/2019 9:40 AM (GMT -5)
I agree with Q. You could try taking a natural soluble fiber such as Metamucil or Citrucel instead of Miralax.

Miralax can be a colonoscopy prep but so is magnesium citrate. Magnesium is healthy but because of its effectiveness as a laxative I cannot take more than 200 mgs per day. But I think that is what you are looking for.

So a daily tablespoon or two of Metamucil and perhaps a little mag citrate might be just as effective and much healthier than Miralax. This is my advice for myself but you can discuss with your doctor.
Posted 8/12/2019 1:21 PM (GMT -5)
Long term effect of Miralax can be Pancreatitis.

To prevent constipation,
- You can try Mag citrate tablets. Ramp up the dose slowly, like 200mg once, then twice and then 3X a day. If it doesn't address constipation in 2-3 weeks, add one more tablet on top of this regimen. If not addressed within 2-3 weeks, add one more. At one point, you will get loose stools. Maintain 2/3rd of that dose to prevent constipation.
What is not good about this option. It flushes out your gut flora. If your remission is finicky (and you are still on steroids), then there is a good chance, it will backfire into a flare.

- Try Psyllium seed powder (NOT Metamucil, its husk, not soluble, rubs the intestinal wall). The seed powder contains soluble fiber. It may help. Try eating flaxseed as well (not roasted ones). Chew as much as you can. more you chew, more fiber is available.

- Try Acetyl L-carnitine1-1.5gm in divided doses. Sometimes there is a mitochondrial dysfunction (not disease). As a result, the peristalsis becomes a difficult process, ending up in constipation. Along with this, you could also show other symptoms like getting tired very quickly, muscle soreness etc.

- Ask GI to Rx you Metoclopramide. You will have to play around with the doses. When I get a migraine, peristalsis completely stops leading to severe nausea. 20mg Metoclopramide and I don't get those symptoms.

Research everything before trying. I do all of these and they work with me, does not mean it will work with you too.
Posted 8/12/2019 1:50 PM (GMT -5)
Thiopurines (imuran/azathiopurine, and 6-mercaptopurine) are kinda the boogieman in the gasteroenteroligist office of late. Our gasteros are reluctant to prescribe them, and when we are given them they often limit their usage to 2-years at most. Why? The very small odds of skin cancer and lymphomas are worried about cumulatively when used over the long term as a maintenance med.

My prior gasteroenteroligist got on my case about this, said no more then 2-years or else I'd have to sign a waiver we had this discussion, I chose to go against his recommendations, and a waiver of liability based on it. Begrudgenly, I stopped 6-mercaptopurine during a 2-year remission and flared exactly 6-months later. He was puzzled, most his patients do just fine after stopping 6MP. I added 6-MP back and am still on it to this day (been on 6MP since 2013 now). Currently in a remission.
Posted 8/14/2019 1:07 AM (GMT -5)
Why on earth would you stop a med that works for you?!

How long have you been on it now?

In my personal experience I have never been able to go med free and stay in remission. That's not a thing for me. Sadly my Imuran remission came to an abrupt stop after 5 years. Since I exhausted all my other medical options (yes I was on biologicals and back-stepped to imuran) I had to have surgery.
Posted 8/15/2019 4:13 PM (GMT -5)
Yes, I'm currently taking a combination of 75 mg Imuran and 1 canasa suppository at night... this combination plus 1 cap miralax has kept me in remission since around end of 2015. In 2013 I was diagnosed with proctitis ( about 4cm inflammation back then)...GI put me on 1 canasa every night for 6 weeks and things were good but soon after I was under a lot of stress and flared pretty bad. Doc then put me on a combination of 4 lialda pills / 4g mesalamine enemas daily for about 2-3 weeks but it didn't help. They did another flex sig and this time the entire rectum was inflamed so they changed it to steroid enemas which helped but then I would get symptoms again when they tried to help me taper back to lialda/ mesalamine enemas. Eventually, I was put on imuran and have been stable since... now I worry that tapering may cause a flare again.

Thanks, I remember taking phyllium husk when I was still in flare mode a few years ago and it seemed to be very harsh on my system.. I would assume that Metamucil capsules might cause the same symptoms but have never tried them..

quincy said...
Only on suppositories.....not on oral mesalamine?

What mesalamine enemas exactly including dosage were you on, and how long on them?

Add a fibre supplement such as metamucil capsules with meals, and probiotics.

q

Posted 8/15/2019 4:15 PM (GMT -5)
Thanks, I will ask my doctor... in the past Metamucil has proved to be harsh on my system but magnesium tablets sound like a good idea..

IamCurious said...
I agree with Q. You could try taking a natural soluble fiber such as Metamucil or Citrucel instead of Miralax.

Miralax can be a colonoscopy prep but so is magnesium citrate. Magnesium is healthy but because of its effectiveness as a laxative I cannot take more than 200 mgs per day. But I think that is what you are looking for.

So a daily tablespoon or two of Metamucil and perhaps a little mag citrate might be just as effective and much healthier than Miralax. This is my advice for myself but you can discuss with your doctor.

Posted 8/15/2019 4:19 PM (GMT -5)
I would definitely prefer to be on a much more natural alternative.. I'm aware of options 1 and 2 that you listed but haven't heard of the others. Thanks, will look it up..

deltaforce said...
Long term effect of Miralax can be Pancreatitis.

To prevent constipation,
- You can try Mag citrate tablets. Ramp up the dose slowly, like 200mg once, then twice and then 3X a day. If it doesn't address constipation in 2-3 weeks, add one more tablet on top of this regimen. If not addressed within 2-3 weeks, add one more. At one point, you will get loose stools. Maintain 2/3rd of that dose to prevent constipation.
What is not good about this option. It flushes out your gut flora. If your remission is finicky (and you are still on steroids), then there is a good chance, it will backfire into a flare.

- Try Psyllium seed powder (NOT Metamucil, its husk, not soluble, rubs the intestinal wall). The seed powder contains soluble fiber. It may help. Try eating flaxseed as well (not roasted ones). Chew as much as you can. more you chew, more fiber is available.

- Try Acetyl L-carnitine1-1.5gm in divided doses. Sometimes there is a mitochondrial dysfunction (not disease). As a result, the peristalsis becomes a difficult process, ending up in constipation. Along with this, you could also show other symptoms like getting tired very quickly, muscle soreness etc.

- Ask GI to Rx you Metoclopramide. You will have to play around with the doses. When I get a migraine, peristalsis completely stops leading to severe nausea. 20mg Metoclopramide and I don't get those symptoms.

Research everything before trying. I do all of these and they work with me, does not mean it will work with you too.

Posted 8/15/2019 4:27 PM (GMT -5)
In my case imuran really helped me get my life back... my doc mentioned tapering for the first time earlier this year. I've been on Imuran since 2015 and have been in good shape since then ( knock on wood!). I get concerned about possible side effects when I start thinking about taking this med long term but then on the other hand I told my doc last time that I was uneasy with the idea of getting off imuran right now. He suggested that we should try to remove imuran and just keep me on canasa daily.

iPoop said...
Thiopurines (imuran/azathiopurine, and 6-mercaptopurine) are kinda the boogieman in the gasteroenteroligist office of late. Our gasteros are reluctant to prescribe them, and when we are given them they often limit their usage to 2-years at most. Why? The very small odds of skin cancer and lymphomas are worried about cumulatively when used over the long term as a maintenance med.

My prior gasteroenteroligist got on my case about this, said no more then 2-years or else I'd have to sign a waiver we had this discussion, I chose to go against his recommendations, and a waiver of liability based on it. Begrudgenly, I stopped 6-mercaptopurine during a 2-year remission and flared exactly 6-months later. He was puzzled, most his patients do just fine after stopping 6MP. I added 6-MP back and am still on it to this day (been on 6MP since 2013 now). Currently in a remission.

Posted 8/15/2019 4:33 PM (GMT -5)
I can't disagree with you... why mess with something if it works. I've been on it since about mid 2015. I really wish I could go med free and just manage all of this with some natural supplements but I have doubts about that happening...


Andrina said...
Why on earth would you stop a med that works for you?!

How long have you been on it now?

In my personal experience I have never been able to go med free and stay in remission. That's not a thing for me. Sadly my Imuran remission came to an abrupt stop after 5 years. Since I exhausted all my other medical options (yes I was on biologicals and back-stepped to imuran) I had to have surgery.

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