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Ulcerative Colitis
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Posted 9/18/2007 8:05 AM (GMT -6)

I know if we had the answer to this question, the world would be a better place :-) ! I wish there were a miracle drug!!!! But, I was just wondering if anyone has had something that has worked really well to decrease their urgency. I'm scared to start taking a fiber supplement but it seems that a lot of people have had success with that?

Thanks!

Posted 9/18/2007 10:22 AM (GMT -6)
I can tell a HUGE difference if I take all of my fiber or not each day.
I will admit, I stopped taking my maintenance drugs last year after I got an infection in my leg.

I start a new GI doctor on the 26th so we will see.

I need to post in my sig line what I am taking now.
Billie Jo
Posted 9/18/2007 10:50 AM (GMT -6)
It seems that you're asking what, besides UC meds, can help reduce urgency-- right? For me it is avoiding rich foods & carbonated beverages, spices like ginger & oregano, & seeds. Bland items like plain boiled rice & farina, also simple noodle dishes have helped me in the worst stages of UC overactivity. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon; should be back in remission soon)   P.S. If you have spasms in the colon, ask your doctor about Levsin dosing-- it helped me tremendously!

Posted 9/18/2007 11:51 AM (GMT -6)
Are you using the Rowasa?

A fibre supplement will bulk the stool.

Are you having loose stool or hard formed stool with urgency?

quincy
Posted 9/18/2007 12:18 PM (GMT -6)
Why are you scared to take fibre supplements? Ill or not, everyone who takes them should always start with a small amount, increasing ONLY if necessary, plenty of water with it is a must...for anyone increasing or adding fibre to their diet they will likely experiance extra gas and bloating but this is normal for everyone since it's just your system adjusting to it.

My GI told me to take it daily for the rest of my life and it was the best info I've ever gotten from a GI in my 16 yrs of having IBD.

It stopped all my bloating, cut my gas way down to a minimal amount (so I'm no longer farting all day and night looking like I'm 6 months pregnant when I'm not), it stopped all my mucus (with the help of taking bee propolis as well), it's formed all my stools, often they come out so formed, there's nothing on the TP when I wipe!!!

It's cut way back on my daily BM's, instead of going a ton of times a day with little deposits, I now go less times with larger deposits.


If anything, for me, I'd be scared not to take it.


Here's my regiment,

bee propolis (natural anti-inflammatory, avoid if you're allergic to bees)
omegas 3-8-9 (natural anti-inflammatory)
probiotics called primadophilus reuteri made by natures way
vitamins A, B12, C-Calcium Ascorbate
Fibre supplement called Prodiem, similar to metamucil.
chamomile tea everyday as well


:)
Posted 9/18/2007 8:45 PM (GMT -6)
I agree with pb4.  Fiber has made a huge difference.  One of the symptoms of my UC was constant diarrhea.  Diarrhea is now rare and I hope it will stay that way.  I usually take about 4 servings of Metamucil powder (pysillium husk) per day.  I just happened to pick Metamucil because that is what was available, but any pysllium husk product should work.  I skipped a day once and the diarrhea came back.  I took the fiber the next day and it went away again.  I will never miss another day if I can help it.  Fiber has cut my BMs down to about 2-3 formed decent size deposits per day and taken away all the gurgling, rumbling and urgency.  My body feels more relaxed.   Fiber is my best friend.
Posted 9/19/2007 5:39 AM (GMT 0)
I'm so glad to hear of others having success with fibre therapy...and glad to see so many taking probiotics as well.

:)
Posted 9/19/2007 12:02 PM (GMT -6)
KJ35 - how do you get 4 servings in - I do good to get 2 or 3 in. Maybe I should try a different brand, it says I have to take it 1 hour after meds and 6 hours before other meds.

pb4 - what type of probiotics did you say that you take. I started my first brand about 1 week ago - my DH picked it up for me at the health food store - I have read that the ones that are kept in the fridge are better - it is made by NOW and called Probiotic Defense -
serving Size 1 Vcap®

Amount Per Serving % Daily Value
Proprietary Probiotic Defense™ Blend of: 515 mg
Fermented Greens [Barley Grass (Hordeum vulgaris),
Oat Grass (Avena sativa), Wheat Grass (Triticum aestivum),
and Alfalfa (Medicago sativa)],
Freeze-dried Probiotic Strains (1 Billion cfu)
[Lactobacillus acidophilus, Bifidobacterium lactis, Lactobacillus
brevis, Lactobacillus casei, Lactobacillus plantarum,
Lactobacillus rhamnosus, Lactobacillus salivarius, Lactobacillus
paracasei, Lactobacillus bulgaricus, Bifidobacterium bifidum,
Bifidobacterium brevis, Bifidobacterium longum, and
Saccharomyces boulardil],
Super Green Foods [Alfalfa Juice Concentrate,
Atlantic Kelp (Laminaria digitata), and Dulse (Palamaria
palmata)]
* Percent Daily Values are based on 2,000 calorie diet.
† Daily Value not established.

Does it compare with the one you have been using
Posted 9/19/2007 12:22 PM (GMT -6)
oakiemon :)

Primadophilus Reuteri, Capsules. Our Top-Selling probiotic brand Primadophilus blended with clinically proven Lactobacillus reuteri. Reuteri is one of the first strains of friendly bacteria to pass from mother to child where it rapidly colonizes and becomes an important part of the gastrointestinal flora. -Reuteri stimulates gastrointestinal epithelial cell development and improves intestinal cell structure leading to more efficient nutrient uptake, enhanced physical growth and overall better health. - Reuteri is the only lactobacillus species to produce and secrete reuterin, which has been shown to exhibit broad spectrum antimicrobial activity. - Reuteri uniquely contains the specific protein "AGGH" that encourages lactobacteria to cluster and colonize in the intestinal tract. In clinical use, Reuteri effectively colonized in over 90% of patients. Reuteri supplementation is clinically shown to promote healthy digestion and intestinal integrity in humans. It is also being researched for cholesterol control, nutrient absorption, immune system support, seasonal respiratory health, and vaginal health....

Ingredients
Lactobacillus Acidophilus, Lactobacillus Reuteri, Lactobacillus Rhamnosus, Vitamin C (1 mg, 3%), Proprietary Formula, Gelatin, Gelatin Enteric Coating, Magnesium Stearate, Maltodextrin

Directions
Take one capsule daily, to receive 100 million Colony forming Units per capsule, of Lactobacillus reuteri. Human studies show this dosage to be clinically effective. For more intensive purposes take up to three capsules per day.


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Just to clarify on my bottle it says it contains a small amount of potatoe starch for preservation, it doesn't mention the "gelatin, gelatin enteric coating, magnesium stearate and maltodextrin".


Posted 9/19/2007 8:46 PM (GMT -6)
Thank you all for your responses! I am going to get a fiber supplement tomorrow. I have been scared to start taking one because I had a bad experience in the past. When I was having a bad flare a GI told me to take a lot of fiber and it made things AWFUL!!! So I've been chicken since!
I started taking Lily of the Desert Whole Leaf Aloe Vera (in combination w/ once or twice a week Rowasa) a few months ago and it has made a significant difference! It has eliminated the blood (90% of the time, there are always those random days) and most days I only go 2 times and they are both in the morning, normal stools. However, they are urgent! I would just love to be able to go out and run errands in the morning and know that I'm not going to have to run and find a bathroom! Maybe the fiber will help to cure that and if it helps with the bloating and gas that would be great too! Most days my stomach pokes out like I'm pregnant too!
PB4- where do you get your probiotic?

Thanks again!
Posted 9/19/2007 10:18 PM (GMT -6)
Don't take ALOT of fibre, just a small amount and increase slowly if necessary as far as the supplements go...I find that taking the supplements has helped me be able to tolerate eating all fibreous foods with no problems.

I buy my primadophilus from a local health food store.


:)
Posted 9/19/2007 10:19 PM (GMT -6)
VSL#3 has 450 billion live bacteria per serving but it is expensive. The more live bacteria the more costly to manufacture, the better for you. Some bacteria may not survive the stomach--especially one that is empty and highly acidic (pH <3). Enteric coatings on some brands allow the bacteria to pass the acidic stomach unharmed but these brands have magnitudes less bacteria. Best bet is to take the VSL#3 on a full stomach (less acidic enviroment) to avoid killing large amounts of bacteria. 

Upset over the cost, I asked the local compound pharmacist about making something similar and he said it was a fair price considering the number of live bacteria--he could only yield 10-30 billion at a comparable price.

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