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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thank you for answering me..g/son had surgery in oct -ilestomy (bag) then addtl surgery in dec to connect to j pouch…but constant cramping and pain and irrigation to stretch spinxter..decision in mar 3 in have bag back and let all heal and then consider again 6 mos from now…at least no pain, eating normally, no meds
Hi gfances, my Mom is the one who orig posted about her grandson having surgery. I’m her daughter & Mom of 8 yr old that just had the surgery. She printed your response for me & I was very interested in your story. Thank you so much for your info. Especially about the fissure/cut from wiping & chronic diarrhea. This is a horrible thing to go through. My son currently has an Ileostomy & we don’t have to worry about that yet. In about 4-6 months, the surgeon will do a take down & connect everything inside again. At that point I realize he could have diarrhea for a long time. They said hopefully after a year, his BM’s should be more normal. I can’t imagine someone having to deal with chronic diarrhea for the rest of their lives, but I know many do. Do any over the counter anti diarrheal medications work for you?
I am looking for information of Entiviyo for UC. What are side effects that real people have suffered?
Hi, @uconn, and thanks for posting this question about Entiviyo (vedolizumab). I’d like to introduce you to some others who’ve talked about ulcerative colitis, like @lisabeans, @kates56, @barens2, @secd, @lynnes, @cdancer2, @christo56, and @sherw, who may have some helpful insights on this medication for you.
You also may want to check out this thread on ulcerative colitis in our Digestive Health group on Mayo Clinic Connect:https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/bookmark/?ajax_hook=action&_wpnonce=6ce6cd701b.
I’d also encourage you to look at the Mayo Clinic blog on Inflammatory Bowel Disease (IBD), where Mayo Clinic experts discuss research, current events and treatment strategies for ulcerative colitis and Crohn’s disease: http://ibdblog.mayoclinic.org.
How long have you had this condition?
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Hi @uconn, I have never taken Entiviyo for UC. I have had UC for about 30 years. Currently, I am having a flare up, so I am taking Prednisone. In addition, regularly, I take Balsalazide. I also take Linzess for IBS-C. Prednisone works for me when I start having problems with the UC. Good luck to you in finding the best medication for your UC.
I would suggest that you read the book “Breaking The Vicious Cycle” by Elaine Gottschall I am nowhere as bad as your grandson. . I am 53, have Ulcerative Colitis since in my early 20s. I have been having a flare since January and it is finally calming down after two rounds of prednisone, corticosteroid enemas, my regular Lialda and also changing my diet. I have researched and am doing a combination of the SCD and Paleo diets. Trying to eat healthy and no processed foods. I use to eat Lean Cuisines for lunch every day, no more.
I have had uc since 2005. I was taking lialada for it. I did not have the diarrhea, I just had bloody stools. I am in remission since 2012 thankfully. I would do some research on the medication and side effects associated with it. Good luck and keep us posted.
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.
Suez, I hope you are doing better now. That must have been scary! I am not familiar with either of those medications or treatments. Fortunately, prednisone works for me when I have a flare up. Keep us posted.
Thanks, I am feeling better. How or what does prednisone do? Isn’t it for short term usage? I only take 2 Lialda per day. Do you take anything for pain?
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?
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!
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