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Ulcerative Colitis
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Posted 4/15/2016 5:39 PM (GMT 0)
Reviving an old thread here.

I was diagnosed with moderate to severe pan colitis in 2008 and it's been a bit of a struggle since. Remicade worked the best with longest duration of true remission. Until I changed jobs and each infusion would have cost like $6000. On humira now, been a few years. It's okay, but never felt fully in remission.

With springtime flare season I started getting worse. My GI gave me a 30 day starter pack. Been taking it for about 4 days now, twice a day, and results have been fairly astonishing. Reduced urgency and cramping significantly. And just feel better overall.

I get a small glass of water, like a rocks glass, add some Mio drink flavor and mix it up fast and drink it all down in one go. Smaller amount to drink and Mio make it no problem.

I'm interested in how I'll feel in a few weeks!
Posted 4/15/2016 6:54 PM (GMT 0)
I still have a couple of boxes of the stuff, I found it difficult to drink/mix. ugh. I'll try it again. I should at least try to use up all of the Enteragam that I have, I never gave it a fair chance because it's so hard to drink.
Posted 4/15/2016 7:24 PM (GMT 0)
For me, the trick is to add enough flavoring to cover up the weird taste and to mix it up and drink it fast, like while it's still swirling so none of it settles in the bottom of the glass, because that's pretty gross. Like weird meaty flavored gelatin. Gross. Lol.
Posted 4/17/2016 12:42 PM (GMT 0)
Just a thought, but if everyone is having such trouble due to the taste but it works could you but those empty capsules at the pharmacy and fill them up with it and take it that way?
Posted 4/18/2016 12:18 AM (GMT 0)
I had a flare and used EnteraGam for 2 weeks, my flare was gone and I was gaining weight. My doctor gives me samples. It is great stuff! I mix it with my morning oatmeal and it tastes great like that! If you can get it, it is worth it! My story, my truth. Best of Luck to all of you!
Posted 5/3/2016 3:58 PM (GMT 0)

noelhelp said...
I had a flare and used EnteraGam for 2 weeks, my flare was gone and I was gaining weight. My doctor gives me samples. It is great stuff! I mix it with my morning oatmeal and it tastes great like that! If you can get it, it is worth it! My story, my truth. Best of Luck to all of you!

I started using Enteragam in Oatmeal and it definitely hides the taste, you don't even know that it's there. I've only been using it for a couple of days.
Posted 10/19/2016 7:12 PM (GMT 0)
I have also started using entergam during a flare. I believe its working. As soon as I take it I feel a calm go over my stomach, my bleeding is slowly decreasing as well as my cramps and frequency to the bathroom. I have been using it twice a day for 5 days and already am seeing results. My GI gave me a 30 day sample pack and each box of 30 doses is 60 dollars. You have to be prescribed and then a pharamcy will call and deliver it to you. I expect to use it maybe for 2 months and feel fine enough to let it go.

I am also on uceris because of persistent bleeding, VSL3, GI repair power and multivitamins. I would say definitely give entergam a try because it worked better than steroids for me and it cannot give you bad side effects
Posted 3/6/2017 5:24 PM (GMT 0)
I have had chronic pouchitis since my ileostomy was reversed almost a year ago. I have been trying various things in addition to Cipro. The VSL#3 caused so much gas it was miserable and not even worth taking.

Recently, my GI added EnteraGam and here is what has been working for me:

I can now take the VSL#3 again because the purpose of the EnteraGam (after extensive reading) seems to be to bind toxins created by bacteria, among other things. Consequently, when I take the two together, I have not had the gas issue from the VSL#3.

To address the taste...I actually mix both packets together in Chobani Key Lime yogurt (which tastes just like key lime pie) and have had no issues taking it AT ALL! To be honest, I actually enjoy it as a sweet snack in the morning and at night.

Even though it seems like a lot of "junk" mixed in the yogurt, the consistency isn't as gritty as you may think. Just imagine it as a graham cracker crust! It may not work for everyone, but it is worth a try.

I have gotten so many great ideas from others on this site, I feel compelled to share anything that is working for me.
Posted 3/7/2017 12:03 AM (GMT 0)
do you know if enteragam can be bought in Europe?
Posted 3/7/2017 3:55 AM (GMT 0)
Ewa,

I am not sure, here in the United States it is by prescription only. However, it generally seems Europe is a step ahead in prescriptions and treatments.
Posted 3/8/2017 12:20 AM (GMT 0)
thanks losingtheucbattle (btw - your nickname is pessimistic, but i'm sure we'll win this battle smile. I was trying to check it yesterday and it seems that it is also by prescription. It's a shame that ill people can't have an easy access to the stuff which is in fact a supplement and not a regular med. Maybe the Big Pharma are afraid it might work better than other things
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