Ulcerative colitis

Posted by laura l @laural1, Aug 12, 2011

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

My gastroenterologist prescribes it for short-term use when I have a flare up, as the Rowasa enemas and Corti-foam did not work. During the flare, I was having bleeding, pain, bloating, constipation, etc. The prednisone reduces the inflammation. Once the inflammation is reduced, it seems to allow my colon to heal, so it stops bleeding, and the pain goes away and the bloating and constipation are reduced. I don’t take anything else for pain. But, I take Colazal for the ulcerative colitis and Linzess for IBS-C regularly. My doctor gave me a sample of Trulance to try for my IBS, as I still have constipation issues, even though I eat a lot of fiber, drink a lot of water and exercise a lot. I have not tried it yet. I am not familiar with Lialda. Does it work well for you?

REPLY

Thanks for your reply. I “guess” Lialda is helping, been taking it only since April. So I’m not really sure. I find it curious you’re eating a lot of fiber, I’m on low fiber. This is what drives me nuts! One source says low and another says high. It’s confusing. Ugh!

REPLY
@suez

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.

Jump to this post

Hi @suez,

I’m tagging @alina151 @concernedmtnmom @liliane @janovr as they have discussed VSL#3; you may wish to view their posts in these discussions:
https://connect.mayoclinic.org/discussion/relentless-bile-reflux-pain/
https://connect.mayoclinic.org/discussion/small-intestine-bacteria-overgrowth/

REPLY

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.

REPLY

Yes, a lot of people have it worse. Thanks again for your input.

REPLY
@suez

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.

Jump to this post

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!

Liked by suez

REPLY

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.

REPLY

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.

REPLY
@suez

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.

Jump to this post

Thanks! I’m a little better.

REPLY

I would like to know if other members have had kidney stones related to their ulcerative colitis?

REPLY

Hi @wendyw,

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.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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.

REPLY
@wendyw

I would like to know if other members have had kidney stones related to their ulcerative colitis?

Jump to this post

Hello Wendy, I haven't had a problem with kidney stones. I've had UC since August, 2016. Good luck!

Liked by wendyw

REPLY

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.

REPLY
@wendyw

I would like to know if other members have had kidney stones related to their ulcerative colitis?

Jump to this post

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.

Liked by wendyw

REPLY
@wendyw

I would like to know if other members have had kidney stones related to their ulcerative colitis?

Jump to this post

Hi Wendy,
I have ulcerative colitis but have not had any experience with kidney stones. I have had UC for about 33 years. Good luck to you with your treatment. I hope you are feeling better soon.

Liked by wendyw

REPLY
Please login or register to post a reply.