Why don't they use ALL CAPS?...
What does EXPERIMENTAL mean, and why did you capitalize it (other than to fearmonger)?...
Why did the immunologist order ASCA antibody tests? (I think you meant ASCA, but your post says ACSA?) There are two types of ASCA antibodies that are sometimes checked - iGA and iGG. Do you know...
That's definitely enough to be suspicious of Crohn's. Good luck with the doctor appointment and let us know how it goes....
This is a puzzling case, to be sure. I don't see the usual patterns & descriptions one would find with UC (it almost always starts at the rectum and has continuous inflammation from there upward,...
Sorry to read of his (and your) struggles with sickness and getting proper diagnosis and treatment. I know it's frustrating. Where are you located? Still going to Stanford Med or somewhere else now?...
Have you had any abdominal MRIs? The colonoscopy, of course, only sees your colon. There's still 20+ feet of small bowel that isn't seen by a colonoscopy. It could even be something other than...
Start with stool tests for "occult blood" and "fecal calprotectin." A gastroenterologist will know those tests. If either is positive, a colonoscopy is appropriate. You should also get blood tests...
Eosinophils are often elevated (a modest amount) in people with allergies and/or asthma. Less commonly, elevated levels indicate a parasitic infection or certain autoimmune conditions. UC and Crohn's...
At the 2019 conference I attended (it was canceled in 2020 due to covid, of course), a couple of the speakers talked about work being done for 'personalized medicine,' where they could do stool...
I think you meant Nobel Prize, not Noble Prize. Let's not forget that Kary Mullis also made his own LSD and didn't have a high opinion of Fauci at least in part BECAUSE MULLIS DENIED HIV CAUSES AIDS....
Have you had blood tests to check for Humira trough levels and antibodies? If so, have you re-tested since upping your frequency to weekly shots? 6MP can be a beneficial add-on to certain biologics,...
Lialda is approved for ulcerative colitis but not for Crohn's disease. You're basically taking an expensive placebo. Have you had any surgeries? Where is your Crohn's located?...
They probably keep disappearing from Youtube because they're full of misinformation....
High cholesterol is generally related to three factors: Genes, diet, exercise. You can't control genes. You can control diet, but with Crohn's that's often difficult to do. And you can control...
Your case is pretty complex - as is the case for so many of us, unfortunately. For your shoulder, did they do any imaging (x-rays, but better still would be an MRI)? For your foot, did the...
Are you on medication for your hypothyroidism? When you say fatigue and pain are your biggest issues, where is the pain? Joints? Is it all the time? When you say you have 'some kind of gut issue,'...
And of course I looked closely at your list of blood tests and x-rays, which listed the doctors who ordered the tests. That kinda helped me figure out which doctors you've seen! :-)...
Well, I used to go to Scripps. That, plus a little Googling, was all it took to figure out most of these doctors. As for Dr. Coyle, he should be fine for IBD. I attend an annual IBD medical...
Also, definitely stop the NSAIDs well before having a colonoscopy. As you know, they can cause bleeding and even inflammation in the colon or small bowel that resembles IBD and can complicate the...
Hi aqualung, I just saw your posts. Is Dr. Patay your primary care doctor? Did he refer you to the rheumatologist Dr. Brion based on your positive ANA blood test? Did he also refer you to Dr. Coyle?...
A dose that low *might* make you feel a bit better, but it's not a long-term solution (more than a few weeks). And it's not enough to quell anything but a mild flare. And it does have risks of side...
They most certainly do....
And that would be known as an ad hominem...
"...a vaccine caused one of my flares..." How does one know that? post hoc ergo propter hoc logical fallacy....
At a recent conference, a talk was given on the subject of how to control costs better for treating IBD patients. One of the things mentioned was that - in most cases - it's a waste of money for a UC...
OK, in that case, see if you can get approval for Stelara. It should be getting FDA approval for treatment of UC in the coming days/weeks/months. (Side note: The blood clots scares/warnings with...
If you had no response at all to Humira, it's unlikely you'll have a good response to Remicade. They're both anti-TNFs, and your complete lack of response to Humira means you're probably a...
How long have you been on Entyvio? You need to give it at least six months before declaring it a failure and moving on. With regards to failing Humira, how long were you on it? Did you have any...
ANAs are normal but what about ANCAs? And do you know if fecal calprotectin was one of the stool tests you've had done? If you're going to do imaging tests of the small bowel, you REALLY should do an...
The small-bowel follow-through is an old test. It doesn't give nearly as good of images as a CT enterography or an MR enterography, both of which are far better at detecting any manifestations of...
premeds like benadryl and/or prednisone are used to possibly reduce chances of an immediate infusion reaction. As far as I know, they don't help prevent any longer-term side effects of Remicade, such...
Still on 75mg of imuran? Typical dosing of it is close to your body weight (in pounds). So 75mg is low except for very small people. Have you had blood tests done to see whether or not you are in the...
I agree with ks1905 - get a blood test done for Remicade antibodies (the test is also called antibodies to infliximab, or ATIs). On top of that, get blood tests for ANAs (Anti Nuclear Antibodies) and...
See my post in your other thread. Call your GI's office in the morning, ask if you can get the blood tests done before getting the infusion, and ask if you can put off the infusion for a few days...
Wait, what?...
Thanks for sharing. You were right about it saying 40%. But you're also right that newer medications may reduce that risk. Another thing that may reduce risk compared to this: This data was...
Can you share a link to the article you read? I'd like to see it....
You'll need something better than Pentasa or 6mp. Pentasa isn't effective at treating Crohn's and is falling out of use for Crohn's disease. 6mp is somewhat effective, but not nearly as good as...
Yes, people have had UC for 30, 40, 50 years without developing colorectal cancer and without needing a colectomy. If I remember right, the lifetime odds of a person with UC needing to have their...
Need for stronger meds isn't based on symptoms - it's based on inflammation found on scopes. What were the results of this colonoscopy? What's more, the long term risk of a UC patient possibly...
c.diff isn't killed by Lysol or hand wipes or soap or alcohol. Only by bleach. You need to clean your bathroom with a bleach-water solution. You may also want to add bleach to your laundry. Why did...
If you still have active inflammation, why aren't you on stronger medications? Has your doctor suggested biologics?...
Yes, I would consider it good news that you don't have a stricture. What meds have you tried/failed so far?...
Nitpicking, but xeljanz isn't a 'tiny protein.' It's a small molecule, about the size of a single amino acid, and isn't a protein....
As Quincy asked/pointed out, have you been thoroughly checked for other 'autoimmune' diseases?...
None of that matters. ERs typically don't include oral contrast for abdominal/pelvic CT scans. And without oral contrast, strictures can be missed. (They can even be missed *with* oral contrast...
Did you drink oral contrast and have IV contrast for the CT scan? If not, it could easily miss a lot of things, especially smaller strictures in the small bowel....
Both are considered safe during pregnancy and during nursing. The only issue is that the baby can't have live vaccines (rotovirus) during their first six months after birth. Some doctors try to...
Call your GI's office and let them know what is happening. See if they can get you in sooner so the doctor can do a flex sig. Also see what their recommendation is about going to the ER. Any fever?...