so I bought some nopal...

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IamCurious
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   Posted 2/3/2015 6:37 AM (GMT -7)   
I haven't tried nopal but it sounds similar to aloe vera. Some IBDers swear by aloe vera but many more were less impressed. One advantage nopal may have over aloe vera is that it is hard or even impossible to find the juice without any added crap like citric acid. Apparently you can prepare nopal cleanly without added ingredients. Just cut it up and add water.
Male/63 DX IBD in Feb08. No meds, allergic to Mesalamine. Remission since Mar2010. Psyllium Seed mixed with VSL3DS is very helpful. Food diary instead of SCD or Paleo.

Lactobacillus Reuteri (NCIMB 30242), Lactobacillus GG (Culturelle), Fish oil, magnesium, multivitamin, extra D3, K2, E complex, boswellia, curcumin, DGL, glutamine.
Resistant Starch and lots of fruit & vegetables (but no cruciferous), No Gluten, no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, no carrageenan, no GMO foods saturated with Roundup.
Nature created all of the locks, therefore Nature has all of the keys

CCinPA
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   Posted 2/3/2015 6:53 AM (GMT -7)   
Had a bit more blood this AM than I have been seeing the last 2 weeks. Still not as bad as before I started drinking nopal, but it's such a downer because I thought I was healing. Still no other symptoms so I'll keep drinking the nopal because it most definitely has helped with that.

I have a call in to my dr about switching to Colazol to see if that will help. I keep seeing whole Asacol pills sometimes (not just the shells) and since Colazol has a release mechanism that isn't PH dependent I am hoping that might work better for me. Plus it has a generic so it will only cost me $10 to try it for a month.

Blood be gone!!
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

imagardener2
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Date Joined Jan 2010
Total Posts : 5604
   Posted 2/3/2015 6:58 AM (GMT -7)   
Curious said: I haven't tried nopal but it sounds similar to aloe vera. Some IBDers swear by aloe vera but many more were less impressed. One advantage nopal may have over aloe vera is that it is hard or even impossible to find the juice without any added crap like citric acid.

I agree with the comparison to aloe vera. Citric acid kills my gut, maybe that's why I've never tried aloe since I read labels religiously. Manufactured nopal water/juice also has ingredients my gut doesn't want.

Being a gardener I have found that plants that have thorns have thorns for a good reason, they generally have something tasty or nutritious that would be eaten to the ground if there were no thorns.
Cactus survives where nothing else can grow and is filled with liquid in a dry landscape.

Cactus (nopal) has a lot of great vitamins but the UC benefit is what I'm after. So far so good.
Current diet=modified Paleo+potatoes+dairy, no fruit or seafood (IBS),low fiber
In remission April 2010 after 10 years of UC with no remission ever
gluten-free (bleeding stopped) and dairy-free (less gas) started remission path+food diary
current meds: (9)Balsalazide daily
only as needed (rarely): VSL#3, mesalamine enema

imagardener2
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   Posted 2/3/2015 7:00 AM (GMT -7)   
CCinPA said: Had a bit more blood this AM than I have been seeing the last 2 weeks.

Consider cutting back a bit on nopal water. It has a lot of dietary fiber which could be irritating your gut. Too much of a good thing may not be the best (Mae West of course thought too much of a good thing is wonderful).

Something else to consider: nopal may be lowering your pills potency if you are drinking it too close to pill taking. Try separating the times as far apart as possible.

Post Edited (imagardener2) : 2/3/2015 7:16:24 AM (GMT-7)


notsosicklygirl
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Date Joined Dec 2008
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   Posted 2/3/2015 7:46 AM (GMT -7)   
Apriso is a standard capsule too. it dissolves at a lower PH I think. Might be worth trying if colazal doesn't work well for you. Both are good options.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: prednisone / entyvio

CCinPA
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Date Joined Dec 2014
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   Posted 2/3/2015 7:49 AM (GMT -7)   
I like what Mae West said ;)

I did cut back a little this AM -- just had 1-1/2 glasses instead of 2. It doesn't seem like the water would have a huge amount of fiber since I'm not eating the skin which is where I suspect most of the fiber is in the plant. But I too thought that maybe I was drinking too much of it -- 24 oz/day -- so I want to cut that back to 16 oz/day.

Over the weekend I did eat some things I don't normally eat -- had some salsa and whole grain chips (I know it was stupid, but it was the Super Bowl!). So that could be a contributing factor.
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

CCinPA
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   Posted 2/3/2015 7:52 AM (GMT -7)   
I have used Apriso in the past, but Asacol seemed to work better for me. I loved only having to take them once a day, but I suspect that may have been part of the problem. If Colazol doesn't work, I might try it again and split the dose up to at least twice/day
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15424
   Posted 2/3/2015 9:06 AM (GMT -7)   
I take apriso 2x a day. I just switched from Lialda. I take 4 capsules AM and 4 PM. it's a lot of pills, I am not digging it so much but I will keep it up and see how things go.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: prednisone / entyvio

CCinPA
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Date Joined Dec 2014
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   Posted 2/3/2015 10:32 AM (GMT -7)   
Isn't that double the recommended dose of Apriso? When I was on it it was 4 capsules once/day

Heard back from my dr -- he called in the script for Colazol. That will be 3 pills 3x/day (9 pills total). It's more pills than I am currently taking (Asacol is 2 pills 3x/day), but if it works I can deal with it.
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

Serialflusher
Regular Member


Date Joined Jun 2014
Total Posts : 57
   Posted 2/3/2015 11:27 AM (GMT -7)   
I tried this for a week with no real results. I've since had my colon removed and I'm finally cured of this awful disease.

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15424
   Posted 2/3/2015 12:06 PM (GMT -7)   
Lialda was great for convenience, 4 pills once a day. I do think I take double the dose of apriso but the pills are only .375g each so it's still only 3g total which isn't that much for mesalamine.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: prednisone / entyvio / Apriso

CCinPA
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Date Joined Dec 2014
Total Posts : 942
   Posted 2/3/2015 1:50 PM (GMT -7)   
If I recall correctly, Apriso works differently so even though 4 pills is less total grams than the max dose for mesalamine it's supposed to give you the same amount of medicine as 6 pills of Asacol HD. I remember reading about it when I was on it. Just don't remember are the details now.

Is the dosage you are on now working?
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

calm-on-the-outside
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Date Joined Aug 2009
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   Posted 2/3/2015 2:03 PM (GMT -7)   
Well I thought what the heck...I'll try it too...will drink my first glass tonight...

Let's all post our results here!
Amy, 38, dx with idiopathic colitis July 2009, confirmed UC Sept 2009
Currently: In some kind of weird semi/mini flare since Nov 2013
Previously: In Remission since April 2010

Lialda - 4/day
Prednisone - Started 40mg 1/11/15
Mesalamine enema every night
Cortifoam - as needed
Probiotic, Vitamin D3, Calcium

imagardener2
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Date Joined Jan 2010
Total Posts : 5604
   Posted 2/3/2015 2:25 PM (GMT -7)   
Having a bad IBS day today totally due to my feeling so good that I ingested not one or two things that cause IBS but 3: white chocolate (a lot last night), some cutup fruit my hubby had in the fridge (also last night) and then this morning green tea (2 cups). My colon is not happy with me. I did have a small amount of nopal water this AM but it did not save me from myself.

So nopal water (at least this far into my test) does not prevent IBS or stupidity.
Since I have not had this reaction drinking nopal water and have had this reaction to the above-mentioned triggers I am sure nopal did not cause my meltdown. But no blood at all, just many BM's.
Current diet=modified Paleo+potatoes+dairy, no fruit or seafood (IBS),low fiber
In remission April 2010 after 10 years of UC with no remission ever
gluten-free (bleeding stopped) and dairy-free (less gas) started remission path+food diary
current meds: (9)Balsalazide daily
only as needed (rarely): VSL#3, mesalamine enema

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 2/3/2015 4:39 PM (GMT -7)   
I don't think mesalamine is effective for me anymore but i am giving this a shot on my GIs recommendation.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: prednisone / entyvio / Apriso

calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 2/4/2015 5:24 AM (GMT -7)   
Had a glass of nopal water last night...it was like kinda thick refreshing water. I'm trying to figure out when to drink it in combo with my other meds...I take my pred and 2 lialda in the morning, vitamin D, calcium and 2 lialda. ..oh and Probiotic at night. Thinking of drinking the water mid day...I don't need it interfering with my meds...

Thoughts?
Amy, 38, dx with idiopathic colitis July 2009, confirmed UC Sept 2009
Currently: In some kind of weird semi/mini flare since Nov 2013
Previously: In Remission since April 2010

Lialda - 4/day
Prednisone - Started 40mg 1/11/15
Mesalamine enema every night
Cortifoam - as needed
Probiotic, Vitamin D3, Calcium

Indycat23
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Date Joined Apr 2011
Total Posts : 661
   Posted 2/4/2015 7:18 AM (GMT -7)   
Anyone try this stuff--looks like I can get it at a health store in my area


http://truenopal.com/
Diagnosed 3/2011 w/ pancolitis
Current Meds-Colazal & Entyvio-started 8/5
Prednisone from 4/1/11 to 10/31/14--finally done!!

Failed/Tried-Remi, Imuran, Humira & Simponi

2015 Plan---Remission or Surgery..time to get on with life.

imagardener2
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Date Joined Jan 2010
Total Posts : 5604
   Posted 2/4/2015 8:04 AM (GMT -7)   
Just be sure there is nothing but nopal in it (plus water). I saw one nopal water company bragging about how concentrated theirs was and soooo much better than others but it had citric acid as an ingredient. Citric acid can be added and still be called 100% natural. My gut hates citric acid.

I'm not sure but think there must be something added to anything put in a container and sold to keep it from molding or generating bacteria. It can be a challenge to find the nopal leaves but if you have a Hispanic/Mexican grocery get the leaves, so easy to make it overnight and way cheap.

calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 2/4/2015 11:01 AM (GMT -7)   
Yeah I found nopal leaves at a hispanic grocery...in Kentucky. ..in February. So I was pleased.

Anyone have ideas on how to space with meds?
Amy, 38, dx with idiopathic colitis July 2009, confirmed UC Sept 2009
Currently: In some kind of weird semi/mini flare since Nov 2013
Previously: In Remission since April 2010

Lialda - 4/day
Prednisone - Started 40mg 1/11/15
Mesalamine enema every night
Cortifoam - as needed
Probiotic, Vitamin D3, Calcium

CCinPA
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Date Joined Dec 2014
Total Posts : 942
   Posted 2/4/2015 11:50 AM (GMT -7)   
I drink mine 1-2 hours before or after meds. Don't really know if there is any "right" way to do this. We're all kind of experimenting with it.

I didn't have any furthers issues yesterday and today was 100% remission quality BM. Today's a good day! Feel completely well. Hope it continues, but I am so grateful for feeling so healthy today!
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

CCinPA
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Date Joined Dec 2014
Total Posts : 942
   Posted 2/4/2015 11:58 AM (GMT -7)   
Indycat -- try googling "Mexican grocery store [your location]" That's how I found the place where I get mine. I'm not sure the bottled stuff is made from just the cactus pads. Most of it is made from the fruit and I have no idea if it would be the same. Good luck!

Really interested in how others are doing on this. I suspect it might help some people but not others (just like everything else!). It's cheap & nutritious so I thought it was worth a try. So far I am liking it! I did email my dr about it last week. He had never heard of it, but said if it wasn't doing any harm and had no harmful ingredients he saw no reason why I couldn't try it.
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

Indycat23
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Date Joined Apr 2011
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   Posted 2/4/2015 1:24 PM (GMT -7)   
Unfortunately Buffalo, NY is a deadzone for Mexican grocery stores. These are the ingredients for True Nopal--
Water, Prickly Pear Concentrate, Natural Flavor.

Serving size: 8 fl oz
Servings per container: about 4

Calories-25
Total Carbohydrate-6 g
Sugars-5 g

Maybe worth a try if I stop by the Health food store.
Diagnosed 3/2011 w/ pancolitis
Current Meds-Colazal & Entyvio-started 8/5
Prednisone from 4/1/11 to 10/31/14--finally done!!

Failed/Tried-Remi, Imuran, Humira & Simponi

2015 Plan---Remission or Surgery..time to get on with life.

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 942
   Posted 2/4/2015 2:14 PM (GMT -7)   
http://www.yellowpages.com/buffalo-ny/mexican-latin-american-grocery-stores

One of the places in this list (The Traveling Feast) looks like a restaurant, but I checked the menu and they serve napalitos which is made from the cactus pads. If none of the other places are convenient for you, you might want to give them a call and explain what you want. They might sell some pads to you or be able to tell you where you can get some. The first time I made this, the store didn't have any whole pads left but they had the cut up pieces people use to make napalitos so I got that. It worked fine except since the pieces were so small it took more time to prepare. Just make sure whatever you get is uncooked.

True Nopal is made from the fruit. Can't hurt to try it, but it's going to be a lot more expensive than making your own if you can get your hands on the pads
56 yo female diagnosed w/UC to mid transverse 1/1/13, scope 10/9/14 now UC or Crohn's colitis
Current meds: Asacol HD 2 tabs 3x/day, Rowasa 1/day, Capozide 1/day (hypertension). OTC: Loratadine 1/day, multivitamin 1/day, align type probiotic 1/day, kefir. Past: Uceris, prednisone, azathioprine- had to discontinue after 2 months due to elevated liver enzymes ALP,ALT,AS

garylouisville
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Total Posts : 9088
   Posted 2/4/2015 3:06 PM (GMT -7)   
The restaurant should also be able to tell you who their supplier is and you may be able to deal with them directly.
Pentasa (500mg) 2 pills X 2; VSL 1 pill X 2; Prescrip Assist Probiotic 1 pill X 2; Grape seed extract (1)400mg X 3; Vitamin D3 (1) 5,000 IU X 2; daily generic Allegra; DAO as needed due to dietary histamine intolerance

Gave me trouble: Zymactive, Renew Life Probiotic 80 billion, Florastor, high histamine foods

imagardener2
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Date Joined Jan 2010
Total Posts : 5604
   Posted 2/4/2015 4:13 PM (GMT -7)   
Prickly pear can also refer to the cactus fruit, which is not the same as the cactus pads. And I would be suspicious of "natural flavor", that can be just about anything including citric acid. But perhaps your gut is not as cranky as mine.
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