My son was in remission from April 2018 till Nov 2019 on Entyvio (6 weeks), nightly mesalamine enema/suppositories, 5x750 balsalazide. Minor symptoms returned in mid Nov and little by little the...
thanks! Was waiting for your response, actually and almost missed it as was responding to Sara. Do you know a desired calcium mg per day?...
Hi Sara! We were on 40 mg 3 years ago when Remicade stopped working. At that time he was just on prednisone (no other meds) and urgency and blood disappeared in 1-2 days. He was 90 pounds then. He is...
So my son's symptoms gradually got worse. It looks like Uceris was not enough to stop the flare and cortenemas did not work for him either. Our GI put us on 20 mg of prednisone starting Saturday. So...
How long did it take you to go to 1-2 bms on prednisone, chocotofu?...
Read this article. Will help to get a better idea of what biologics work better for non-naive patients. https://www.eurekalert.org/pub_releases/2020-01/aga-nag012120.php...
Read an article recently with the same point: Add resistant starch Most of the starch in our diet - like white bread and pasta - is quickly broken down and absorbed. But a fraction of that starch is...
Thanks! So, theoretically, if I find a place where can they analyze microbiome in depth, then I can order probiotic form them. Does anybody know of any companies doing all three steps: microbiome...
Good start! Anybody know why they call themselves "Custom"? Do they customize it for a person? condition?...
Was googling for custom meds and probiotics and found a link to Custom Probiotics Inc. This LA-based (Glendale) company. Did anybody hear/try them? Is anybody aware of any companies worldwide...
Thanks for posting! Like reading about some scientific advances related to IBD. Few cents of hope would not hurt for sure!...
We are currently taking 1500 mg Qunol (enhanced absorption), but I see some similar ones by the same producer with explicit "hydro-soluble technology" note. Somebody recommended Pure Encapsulations...
working on changing may approach :) thank you!...
This is hard, but I have to learn how to be more patient. Sometimes I get in a trap of comparing symptoms day by day, or even bm by bm. He's only been on Uceris for 4 days and turmeric for 3. His...
Thanks, iPoop! Anybody tried Imuran after failing 6MP?...
So, food or cold could not have caused a bit of mushy stool and a bit more blood due to irritation? I assume Uceris and Turmeric take more than few days to work, right? Anybody with experience with...
The doc form Te Aviv recommended to do a colonoscopy/sigmoidoscopy asap to see where the inflammation is. We talked to him when symptoms were mild though. His hypothesis was that if inflammation is...
My son and I have been fighting with his then mild flare for more than a month. Initially it was just red spotting on TP, not every day. We left California for 2 weeks and first went to Tel Aviv to...
I will write a separate post these days about the diet that was recommended to us. You can only google the name - Novel UC diet, but will not find much info other than it is on some sort of clinical...
Thanks, Susie! He is more introverted than I am, so you never know. Of course it is hard on him. He was diagnosed at 14 and 17 now. I have 1.5 years of school and then may be few years of college to...
Thanks for your support. My son has been on rectal meds for almost 2 years now. He does not like them, but more or less ok with it. At the same time, it will probably be too much for him to go with...
Thanks for understanding! and not to forget, I have lots of respect and sympathy for people who contribute to this forum. Sometimes feel like I am whining too much. Just still cannot understand the...
He obviously does not like rectal meds. He is on nightly enema and now it will be daily supp... Told him that we would try it for 2 weeks....
I think he is on a pretty decent maintenance regimen already. yes, we will request sigmoidoscopy... Till then, we are flying a bit blind...just thought somebody had similar symptoms......
You are right... already scheduled a session with a therapist. Never used shrinks before. But so far I was only able to get into normal mental state when my son is in remission. Cannot control it,...
No pain, no blood in stool, just spotting on TP. Is it fair to assume that his inflammation is in the rectum only? may be very low? If it would be higher, he would probably had stool somehow mixed...
I think I am repeating myself, but may be you can help me as I am really losing sleep and turning into a mess as we cannot get rid of minor symptoms for my son's UC. Facts again: Get into no-symptoms...
My son seems to be calm... of course, he is anxious inside. I am probably the most stressed one (visibly) on the family. Already planning my first visit to a psychologist to help me to deal with my...
We do have symptoms, mild they are, but we do have them :(...
It was just 15 - 15 months ago, then 3 months ago it was 300, and one month ago 150. His symptoms are still mild (just red spots on TP). We are trying to get into symptoms free state, though....
We did calprotectin test in September and it was high (300), redid it in November and it turned back 150. At the same time we did not have any visible symptoms with 300, but started to see mild ones...
Thanks!...
Thanks, Keith! We tried 6-MP 2 years ago. Worked very well for his symptoms, eliminated them. But some of his liver vitals got bad and his GI stopped it. Symptoms reappeared in a month or so after...
It's obviously more convenient. My son is just 17 now, and I am gathering all options as you never know which one is/will be approved for pediatric use. Although, I assume 17 might be an age when...
I wish Humira work for you till a real cure is discovered!...
We'll need to clarify about the antibodies.. do not remember. He received a very good response initially and then for a few months. Frankly, I think Remicade alone was not enough to cope with his...
This is what we are currently doing - trying cortenemas instead of mesalamine ones and will add budesonide soon. Insurance has not approved it yet, but I am buying to out of pocket with help of my...
Hi again, Sara! I still keep my finger crossed for Humira to work for you! Would be good to know that it can work if Remicade fails as well :)...
My son and I are currently trying to get his still mild flare under control, but I mentally feel better knowing that we have some options in front of us. We always had some doubts about Entyvio as it...
Thanks, Lisa!I think we'll give it a try. So far I only found one way to deal with me permanent anxiety - trying to find dietary or non-med ways to help my son. I turned pescatarian and eliminated...
Thank you, Lisa! ...
Will keep my fingers crossed for you!...
Started steroid enemas yesterday... we'll see. Initially my son was diagnosed with pancolitis (Oct 2016), colonoscopy in May 2017 showed inflammation only in the left side. Since then we never had...
Thanks, Sara! Is Humira working well for you?...
Few years ago we tried Uceris when tapering of prednisone. Was not effective enough. Our doctor just recommended us to add Uceris tablets. I am a bit hesitant as do not want to increase steroid...
Will try to test his calprotectin every six month no matter what....
Hi Rocket Man, Thanks for your questions and input. We did not test his calprotectin for a year or so. It was 15 and then in a year 300, then in 2 months 150 (the latest one). Strangely, he did not...
Have any of your had any experience with budesonide/uceris foam? Can it be effective in stopping the flare?...
We did not have a lot of blood, but what you describe may be his case. will ask his GI if she is ok with hemorrhoid treatment. I assume the same treatment can work for fissures as well. Thanks for...
Thank you, guys/gals! All your comments help as I still find it tough to deal with my son's condition. exhausted mentally. I will talk to the GI about supp+enema or 2 enemas (poor boy). We eat...