Looking for suppliment advice

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solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 3/23/2008 11:41 PM (GMT -6)   
Hi, currently my UC in being managed by Asacol x4 daily and Salofalk enema every other night.  Everyday is a different day as far as symptoms. One day I bleed more than the last, yesterday I was doubled over with cramping, today I have pressure and urgency ect...
 
I am interested in hearing about suppliments, which I am not on.  I would like to hear from others what they are taking and why.
 
Today was the first time I have heard about probiotics and how it seems to help the gut.
The only suppliment I am on is vitamin B12 1000mg a daily because when the colon is not working, our body has a hard time absorbing B12. That's about the limit of my knowledge of suppliments.  See how much I need to learn? lol.
 
I am very interested in hearing what others are taking and what it helps with.
 
Thanks.....I am so glad to have found this board.
45 yrs old. Mom of 3. Youngest child has Down syndrome and husband has Muscular Dystrophy...Stress is a factor for me.
Diagnosed 2001, Ulcerative Pan Colitis. Hospitalized 1 month.  
Symptom free and medication free for 5 years.
Flare October 2007. Asacol 8, 400mg and Salofalk every night.
 


hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 3/24/2008 12:50 AM (GMT -6)   
there are a lot of supplements that help some but not others. so unfortunately the process will be lengthy if you do it right.

you can try the advice of many others who may respond, but you won't know what's helping unless you try one thing at a time. and possibly keep a journal of meds/food and how you are feeling as far as UC goes.

some things that have helped me:
probiotics (i used primal defense but felt much better when i switched to Pro Bio made by enymedica)
fish oil helped me when i was dealing with urgency but no longer helps me. started to make things mushy.
psyllium husk powder (mixed with diluted juice). though i don't think i started it until after the bleeding stopped. i take this with every meal and you have to start with a tiny amount and work your way up.

and cutting out most processed foods. a food journal helped me eliminate a couple of foods that really irritate me as well.

but honestly, i didn't get the bleeding under control without prednisone. although i know many folks have been able to and hopefully you can too.

there are a ton of things out there than help many people and it can be overwhelming. but the main thing is that just because it worked for some people doesn't mean it will work for you. just listen to what your body is telling you. if it doesn't like something, don't force it.

hope you are feeling much better soon!!
28, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Asacol, probiotics, ground psyllium husk, fish oil, prenatal

may you live all the days of your life.


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 3/24/2008 1:26 AM (GMT -6)   
Hi there,
I saw this thread and thought I'd share my experience of VSL#3 with you. This is a probiotic that is undergoing FDA approval for the treatment of UC and IBS, as well as those with ileal pouches. As far as I know, this is the only probiotic that is being researched and potentially approved by the FDA for treatment. My GI (who was named one of the best GIs in Phoenix - he's amazing) recommended it for me. I have not been diagnosed with IBD but have very similar symptoms, including tremendous watery D, weight loss, etc. Since I started taking VSL#3 twice a day, my bathroom trips have literally been cut in half. It is a HUGE deal going from 10+ times per day to less than 5.

They have a website, VSL#3.com, but here's an excerpt from the site:

"VSL#3® provides specifically modified nutritional support for the management of medically diagnosed ulcerative colitis (UC), Irritable Bowel Syndrome, or an ileal pouch by delivering a high concentration of several strains of live bacteria in a formulation that survives gastric fluid, bile, and pancreatic secretions, and colonizes the gastrointestinal tract.19,20,44,66 Studies have demonstrated that the gut microflora modulate intestinal inflammation, reduce colonic permeability, and enhance barrier function. 22,35,39,49,64 Patients with pouchitis who received VSL#3® were found to have increased concentrations of the anti-inflammatory cytokine IL-10 and reduction of the pro-inflammatory cytokines IL-1α, interferon-γ, and tumor necrosis factor- α, as well as inducible nitric oxide synthase and matrix metalloproteinase activity to concentrations similar to those found in non-inflamed pouches64."

The reduction in pro-inflammatory cytokines is significant, as these have been implicated in the pathology of IBD...anyway, just a thought. It is about $45 a month or something like that but is well worth it for me, personally. Good luck!
Co-moderator - IBS Forum


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/24/2008 2:06 AM (GMT -6)   
I take bee propolis, infact it's been almost 5 yrs of taking it daily..I started with the liquid form which tasted just awful but it absorbs faster, then when I quickly noticed improvement from it, after I finished the bottle of liquid I bought cap form (the best is from puritans pride online)....after one whole day of taking it (the liquid) 3 times, the next day it stopped all my bleeding and terrible lower back pain (which I would get during all of my 30 BM's/day and I'd be in tears from the pain), cut back on my 30+ BM's/day to around 15/day....bee propolis is a natural anti-inflammatory and my GI strongly encourages me to take it every day for the rest of my life, he says it's non-toxic and it's a great nutritional supplement on top of how well it's helped my symptoms, after all, no more bleeding, pain, cut back on mucus and frequency and so quickly with no side effects, you can't lose...but if you're allergic to bees you're suppose to avoid all bee products.

Then I added fibre supplements as ordered by my GI, also to take every day for the rest of my life and that just helped even more, cutting back on frequency again (so then I started going 10X/day, no more mucus at all and completely formed BM's, sometimes when I wipe the TP is clean because they come out so formed.

I added omegas 3-6-9 daily too, my skin is better and my mood improved greatly, it's also anti-inflammatory so I'm sure it's a benefit as well, but when I added the last thing, probiotics one called primadophilus reuteri made by natures day (one/day) that's when I finally got down to going 5 or less times a day.

I also take vitamin B12, A, C-Calcium ascorbate.

So you see, the natural route can be a huge benefit, often it takes more than one thing to get good results, but I AM NOT on any oral RX used for crohns, just the natural things I mentioned above and I have NO SIDE EFFECTS, and pay alot less money a month than if I was taking oral RX.

I've also altered my diet, no junk of any kind, especially sugar, no processed crap either....I drink water and chamomile tea (also a natural anti-inflammatory) everyday and nothing eles...I exercise regularly with cardio and weights, as exercise is crucial for normal functioning bowels.

I have crohns-colitis, so my CD is affecting my colon (going on 17 yrs now), when I first got sick it was also in my small intestines, colon, rectom and anus (still in my anus with perianal crohns skin tags which had surgery on them because they were mistaken for hemmies, that's where my CD first started, not internally but externally with my perianal crohns skin tags.
My bum is broken....there's a big crack down the middle of it!  LOL  :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30842
   Posted 3/24/2008 2:37 AM (GMT -6)   
solomino539 said...
Hi, currently my UC in being managed by Asacol x4 daily and Salofalk enema every other night.  Everyday is a different day as far as symptoms. One day I bleed more than the last, yesterday I was doubled over with cramping, today I have pressure and urgency ect...
 
IThe only suppliment I am on is vitamin B12 1000mg a daily because when the colon is not working, our body has a hard time absorbing B12. I
 
Hi...two things....you should be on the rectal meds nightly if you're still bleeding.  Can't remember..were you on them nightly recently and just started to taper?
 
1000mg would be a mega overdose amount...what is the actual amount you're taking?
You should get your b12 checked out by your doc ... if you need a higher dosage, maybe shots would be better.
 
Are you eating OK?
 
quincy

*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 3/24/2008 7:30 AM (GMT -6)   
I also take bee propolis, probiotics, calcium carbonate, multivitamin and fish oil supplements. They all seem to help. The calcium is mainly for the kidney stones that I am so lucky to get along with my UC. I agree with pb4, the bee propolis has helped greatly. I only take 2 a day (I just started this) and it had really helped out with my symptoms. I got the ones that I take at Whole Foods.
diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/24/2008 1:57 PM (GMT -6)   
Thanks for sharing your success lemonhead, it's encouraging to hear others that notice improvements with the BP too, my GI thinks it's great how much it helps me, he said even if it didn't that it was still an excellent dietary supplement for IBDers since we don't tend to absorb all nutrients needed via food alone.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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