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Hey guys, I was wondering if there are any natural replacements for Lialda? 

Here is a little background on me: Diagnosed UC October 2014.

Had J pouch 2 step surgery in May of 2015. I have been taking 3-4 1.2 gram tablets of lialda ever since I have been diagnosed. So I have been taking it for the past 3 and a half years now. Before the surgery I thought I wouldn't have to take any maintenance drugs after surgery because I thought my UC would be completely gone because of the surgery. Love how my doc never tells me these kind of things. 

But anyways, I recently went to my doc and told her I didn't want to take lialda anymore because I could feel it doing damage to my other organs. Like I could literally feel sharp pains in my other organs that would last couple minutes. Plus I am also losing hair and I think all of this is because of the lialda since that is the only thing that I take on a regular basis. I may seem naive, and it is because I am, but I think the lialda is to control my pouchitis or cuffitis which i get a round of every 5 or 6 months. Which then I take flagyl and cipro to get rid of it and if its severe, I add a little prednisone. I am sick of taking all of these kinds of drugs and want to switch to an all natural route.

So when I told my doc this, she recommended I start taking VSL 3 with a 1,000 mg turmeric supplement. Has anyone tried this? Are there other options? will this work? I just want to find an all natural way to stay in remission... hopefully forever. I am going to try this out either today or tomorrow depending on when I can find a good all natural turmeric supplement. Do you guys have any recommendations for an all natural turmeric supplement?

I am also not getting all the nutrients I should be getting. Leaving me feeling weak and tired all the time. Is there any all natural products to help me get all the nutrients I need and that my body can actually absorb? Might seem like a dumb question with its solution being just eating right, but hey it never hurts to ask. Eating right is also a task easier said than done. And with so much info on what we should actually eat its overwhelming to know which is right from wrong. Or maybe I just need to find a reputable and reliable source. 

If you have any questions for me please don't hesitate to ask. Any and all info very much appreciated! Thank you for taking the time to read this

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Short answer is no. There are other forms of 5-ASA drugs, but it sounds like you are not interested in them. VSL#3 and tumeric are “natural” options, but they work in a different way and may or may not be helpful for you. Most people tolerate them well, but the VSL#3 might give you a fair amount of gas and cramps at first. 

Give it a try and see how it goes. The only thing I want to stress is that inadequately treated pouchitis or cuffitis leads to complications too, so keep that in mind. 

Jan

I echo Jan as well, try the VSL#3 and see how you react to it, and if you can I would also try some Manuka Honey, preferrably the Comvita brand with a minimum of 15 UMF. I have had good success with it in keeping my cuffitis, and pouchitis symptoms at Bay. Cheapest place I have found it is on Amazon. It's a little pricey, but if it works then it beats taking the drugs you are taking, and it is good for you as well.  

 

 

I’m more than a little skeptical of “natural” solutions, since there tend to be some false beliefs about what that means, and what the advantages might be, and (worst of all) what side effects may exist. Nevertheless, focusing on the VSL question, it’s important to use VSL adequately, and that means a significant quantity is usually needed to have any effect. One VSL capsule is probably useless. I take an especially high dose (of the DS packets), equivalent to 32 capsules daily. This is quite expensive, though I’m pretty clear that I get real benefit at that dose. There’s no evidence that I’ve seen that it helps with cuffitis, but it seems to more clearly help with pouchitis. YMMV.

Another thing to point out is that clinical remission (improved symptoms) and endoscopic remission (visual proof of mucosal healing) are not synonymous. Doctors have found that you really need to strive for endoscopic remission. Many of us were lulled into complacentcy by assuming we were doing well because our symptoms improved, but the inflammation remained when scoped. 

That is where I was and why I wound up on Remicade and Imuran.

Jan

Scott, It took a bit of searching, but I found this passage in the article “Pouchitis: What Every Gastroenterologist Needs to Know” (under the section Prospective View and Recommendations). 

https://www.ncbi.nlm.nih.gov/pubmed/23602818

”Patients with minimal symptoms but with endoscopic inflammation still should be treated to minimize smoldering inflammation causing chronic “stiff” pouch with transmural inflammation, which can result in pouch failure.”

While it seems like speculation, it is known that a chronic “stiff” pouch can become an unusable and failed pouch. There is no return from a failed pouch.

Jan

Last edited by Jan Dollar

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