grandson 8yrs old has had colitis since 3yrs old, now facing prospect of surgery, as he has been on steriods for to long, Anyone who has child of this age, to share information…..we are in Ca with Drs in Roseville pediatric center
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Hello! Has anyone taken VSL#3, or Profermin Nordisk Rebalance (medical food) for treating UC? I’ve been researching diet and probiotics.
I’m recovering from a major flare up, in which I threw up and fainted from the pain! Has anyone else experienced fainting? My blood pressure plunged and I passed out. Luckily, I was at my doctor.
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I’m tagging @alina151 @concernedmtnmom @liliane @janovr as they have discussed VSL#3; you may wish to view their posts in these discussions:
I know – it can be really confusing! The reason my doctor has me on a high-fiber diet is due to my constipation issues. As long as I am not constipated, everything is fine. But, as soon as that starts, it causes all my problems. But, I know a lot of people are on the low-fiber diet for UC, as it helps to give the colon time to heal. Sometimes I wonder why there isn’t a simple cure for this. It is very frustrating, but I know a lot of people have it worse. At least prednisone is not expensive.
Yes, a lot of people have it worse. Thanks again for your input.
My daughter took VSL#3 to help her recover from bad C. difficile infections. WE found it to be effective, but first you need to kill the bad bacteria that’s making you miserable.
The low-down on probiotics: First, many need to be refrigerated (shelf-stable ones that don’t need refrigeration might not be that viable or effective; VSL#3 is stored in the fridge at drug stores like Walgreens). She also took a probiotic yeast, S. boullardii, which didn’t need to be refrigerated.
Second, you need to measure probiotics in the billions, and to make a difference in your microbiome, based on my research and experience, you need at least 100 billion taken daily to make a difference.
Third, the microbiome is a new frontier in medicine (NPR has lots of interesting podcasts on the latest research) and each of us carry trillions of microbes in our guts. So it’s a numbers game and a combination game. There are numerous/countless strains in each of us (I’m not a biologist, so I’m generalizing here) and they work in balance and harmony or, if they are not in balance, cause damage and toxicity. Basic rule is that probiotic supplements that contain multiple strains may offer better results.
Fourth, it is hard to find a doctor who is well-versed in all this, and nutritional consultants might be better advisers. There are new studies and findings every week, so keep up the research if this seems like a reasonable pursuit. Good luck and never give up!
Hi @cdancer2 and @suez,
I was wondering if you had a chance to view the new Gastroenterology & GI Surgery Page on Connect? https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
You may wish to listen to the Mayo Clinic Radio podcast, where Mayo Clinic gastroenterologist Dr. Joseph Murray, M.D., discusses probiotics.
Thanks to all who answered my question about VSL#3 awhile back. I apologize for not responding. I’m still searching for a probiotic to try.
Thanks! I’m a little better.
I would like to know if other members have had kidney stones related to their ulcerative colitis?
I merged your discussion about finding others with kidney stones related to ulcerative colitis (UC) into this conversation, so that you could connect with other members who've shared their experiences with UC.
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I'm confident that @lisabeans, @kates56, @barens2, @lynnes, @cdancer2, @christo56, @uconn @suez will return to share their thoughts and insights. @wendyw, I realize how worried you must be, and that you're doing all that you can. I want you to know that we're here to help.
Hello Wendy, I haven't had a problem with kidney stones. I've had UC since August, 2016. Good luck!
I was diagnosed with ulcerative colitis in 2005 and went into remission in 2012. I have been in remission ever since. I took Lialida and kept taking it maintenance to keep me in remission. Since I now have other inflammatory issues, I stopped lialida and take leufanomide for maintenance and inflammation. Good luck.
Never actually had a problem with kidney stones except for a one-time event relieved with laser surgery. Interested to see if anyone else has had a similar experience to yours and what their results were. Can imagine it would be quite painful. Hope you are able to find some answers.
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