My son started daily beta blockers (for anxiety) in February and in April started flaring significantly, he asked his doctor if it could be the beta blockers and she said no so he kept taking them...
Hi My 18 year son has active UC but he is stable right now on oral and rectal mesalamine (no biologics). He just tested positive for Covid and has a cough. We are trying to decide on Paxlovid. We...
Thank you all so much for your input. I could not have gotten through the 7 years and kept him so healthy without the help of this group. For those who do switch to biologics were you able to stop...
One additional piece of info: he had a full scope just 6 months before the flare. The scope showed COMPLETE and total remission (not even microscopic evidence of inflammation). In response to that is...
My son (now 18, diagnosed with severe pancolitis at age 12) experienced a flare this winter after about 6 years maintaining remission with 4 tablets Lialda and Rowasa (a few times per week). For past...
My son, with UC, got the Pzifer vaccine last week and was tired a bit that afternoon but otherwise zero side effects....
Hi My son's UC is fairly well maintained but is suffering from increasing migraines. Migraines run in my family so I don't necessarily think that it is UC or medication related but does anyone know...
Our IBD clinic here in CA sent letters to all the IBD patients indicating that they are eligible and to show the letter the vaccination station. In fact, our GI doctor said that getting immune...
I have had success ordering it from Walgreens but that is the only US pharmacy I have been able to get it though. I’m in California...
Well after the 4th appeal insurance has agreed to continue covering lialda (and even brand name at that) for the next two years. Thanks everyone for the advice. In response to Kich...there may be...
Thank you for all that good info. With GoodRx i can get a coupon for 50% off for the generic but no coupon for brand...so even out of pocket the generic is a better deal. But i do want to find one...
Insurance won’t cover my son’s brand name lialda and wants to switch him to Apriso. I’m thinking switching him to generic lialda (i would pay out of pocket but can afford if generic) would be less of...
Our insurance is forcing my son to switch from LIalda to April’s. Very frustrating bc Lialda has worked really well for him and I’m reluctant to change anything. The response that (oh well if he...
So is APRISO chemically the closest to Lialda??...
He could manage with 2x a day but definitely not 3x per day. For some reason he does fine with the sulfite in the mesalamine but the topical sulfite in the rowasa caused some swelling so we switched...
My teenage son has miraculously stayed in remission (had moderate to severe Pancolitis) on his current regime of 4 tablets Lialda daily, probiotics, various supplements and SFROWASA a few times per...
Bruce J: Do you mind sharing what priobiotic you used while on the antibiotics?...
In response to those who wanted more info about my son’s joint paint history/treatment: starting when he was little (maybe 2 or 3) he would have a couple of episodes per year where his hip joint (on...
Hi My son was diagnosed with severe UC but has mostly been in remission the past few years. He just had his wisdom teeth out and developed an infection and they want to put him on antibiotics but I’m...
Mesalamine enemas (Rowasa) have worked great for my son. Pull him out of a flare every time and it is his left side that is usually worst....
Yes, my son’s primary symptoms is his serious joint pain, the gut issues are always secondary if they appear at all. We just talked to his specialist about this and he (who is very involved in the...
The one time he had tylenol w codeine (or maybe it was tylenol w vicodin..i can’t remember) he developed the most intense stomach pain. He was doubled over crying. I’m gonna look for the jaw specific...
Hi My teen son who has pancolitis (in remission) has wisdom teeth removal coming up and they usually suggest preventative antibiotics and oral pain meds to follow. Im reluctant to have him on any...
Keep appealing with insurance (it worked for me w my last insurance), especially if you argue that you believe taking the probiotic is preventing you from escalating to biologics. They hate the cost...
My son has been on 4 tablets per day for a few years and has the exact same symptoms. When I reported the ringing and lightheadedness to the dr they had him see a specialized ophthalmologist (one who...
Garyi: That is a fabulous tutorial, wish we had that when he was first diagnosed. Ipoop: thanks for the level of detail, very helpful...
Thanks so much everyone. Entocort is the same thing as budesonide (uceris) foam?...
All i can get my hands on is the regular strength VSL sold directly from the VSL website. Visbiome Extra Strength is supposedly exactly the same formula as vSL#3ds (Except does not use a cornstarch...
Could someone explain to me the differences between these rectal meds--Rowasa (mesalamine) v Cortenema (Hydrocortisone) v Entocort (Uceris/Budesonide)? I know that the active ingredient is different...
Happy to report my son seems to be pulling out of the flare--nightly Rowasa and more limited diet seem to be the trick. I don’t have the VLS delivered yet, continuing to use the visbiome but 1/2 as...
He was using the double strength VSL#3 (so VSL#3DS packets). And i’m not sure of its effectiveness but he was on it and maintained remission for 3 years so i figured why change what seems to be...
My son is in very similar situation. Went to low residue diet and increased rectal meds to daily (his lialda is already at the max 4 tablets)...took about a week but seems to be pulling out of it....
I was just able to order the regular strength vsl from their website (you can no longer get in any pharmacy but apparently they will still sell directly). So i will try that. Thanks for idea....
Hi My 15 year old UC son has been in remission for a few years and was on VSL#3 Double Strength (prescription strength packets 1 per day) for the last 3 years but pharmacy recently said it was on...
Thanks so much iPoop...
Im in California and my son is flaring again but I’m unable to find any pharmacy that can get the SfRowasa (i know a few people on here have had some success but I’m hitting a wall). I do however...
Any reason to think St. Johns Wort and/or Passionflower would be contraindicated for someone with UC. My teen son (has severe pancolitis in remission for 2 years now) is struggling a bit with anxiety...
I guess my confusion is he didn’t test positive for C Diff, he tested positive for the antigens (GDH) and negative for the toxins....
now they are saying he also tested positive for C. diff antigens (but not toxins)(i don’t know what that means). And they want him started on Flagyl. I’m so reluctant to start him on antibiotics...
4 days after getting back from Latin America my son (who has been in symptomatic remission for 18 months) had a day of urgent diarhhea w blood. I thought it was maybe the start of a flare or exposure...
Despite my son’s UC & restrictive diet, we got talked in to joining another family on surf trip in Mexico and am terrified of jeopardizing his remission. He has been doing SO well and i wanted to let...
My teen son has been doing the Rowasa enemas since he was first diagnosed, so many folks on this forum swear by them. He has said you get used to them very quickly and after a while they are really...
I don’t appear to be in a known cluster area. But i’m on the coast in San Diego and my son (and “coincidentally” the other two kids we know who have it) spend a lot of time in the ocean. Not sure if...
I think for my son it was some combo of: years of high anxiety and stress, a diet high is processed foods bc he was so picky, and then 12 months before onset we moved which means he was suddenly...
I have always filled my son’s SFRowasa script from ExpressScripts online...
That’s great. How are you using the oil?...
Was happening to my son until we added metamucil capsules to diet and now that problem has resolved....
I would start with something like chicken soft tacos (mild) with some guacamole (Corn tortilla). Avoid beans or big heavy portions and sauces....
How about taking a packet of the VSL#3 probiotic daily...can help get things back on track. Maybe things are just a little off....
UPDATE FOR THOSE WHO ASKED: It’s been 5 weeks and we just got our new lab results. Calprotectin down to 74, CRP and SED totally normal. Hooray! Though the doctor had prescribed us Uceris after that...