I did hypobaric oxygen therapy twice a week for three months. Absolutely no effect on my UC that I could discern. Please note this can be done in a hard chamber or a soft chamber. Hard chambers...
FYI, I called Red Cross's blood donation group. They said UC is OK for blood donation, as long as you are asymptomatic. That doesn't make much sense to me, but that's their call....
Anyone know if blood banks will take donations from people with UC?...
Entyvio was not on the formulary for Blue Shield of California. But they approved it based on my doctor's appeal. It wasn't on my previous insurer's either. They required me to try and fail with...
Entyvio...
I take Stelara every 4 weeks. No side effects....
I had no side effects from Remicade. Didn't help much either, though....
https://www.cghjournal.org/article/S1542-3565(21)00911-3/fulltext?dgcid=raven_jbs_aip_email#relatedArticles Interesting study: Ultra-processed foods and risk of Crohn’s disease and ulcerative...
I had 2 doses of Moderna. Extreme fatigue for one day following vaccination. No apparent effect on my UC....
I got Moderna 1st dose on March 15. Next day, I just slept: too tired to do anything. Okay the following day. No affect on UC. 2nd dose yesterday. Not quite as tired this time. I'm on Stelara, btw,...
This won't help with running, but I find that inline skating is possible when running is tough. Not as much impact, less jarring / sloshing around your guts. Skating also gets you outside, if you...
Hydrocortisone enemas helped me as well, when mesalamine enemas did not. If it's too hard to retain the enemas, you might try hydrocortisone suppositories as a first step. That might reduce...
Over many years, I have used VSL#3, Visbiome, Mutaflor, Activia, kefir, SEED, RenewLife Ultimate Flora, bifido bacterium, rhamnosus gg, planetarum, s. Boulaardi, several others I can't remember. I...
My gastroenterologist said essentially "I don't think you are at much greater risk of COVID, but if you need a letter to get priority, I'll write one." I Currently have "mild" UC, on biologics. But...
gacel610, Welcome, and sorry you're here. Not a club anyone wants to join. Some advice: #1. There are 100's of proposed therapies for UC. A lot are scams; others are completely unproven. You can find...
Well, this doesn't sound good... From BMJ Gut, a journal of the British Society of Gastroenterology...
On Entyvio I slowly improved over about 9 months. Most effective therapy that I have had in 12 years. But it did not get me to 100% remission; just down to mild symptoms. I suggest you give it at...
I have been on Remicade, Humira, and Entyvio. No side effects from any of them. Remicade and Humira did not help me much. Neither did mesalamine, balsalaside, azathioprine, prednisone. Entyvio helped...
You don't really know what you're getting with any of these. They list the bacterial strains and the total amount, but don't specify how much of each strain. So you might get 70% of one strain in one...
On the advice of my gastroenterologist I have taken 4 grams of curcumin daily for several years. That's along with Entyvio and balsalaside. Very hard to tell if the curcumin makes a difference. I...
You might try hydrocortisone suppositories for proctitis. Easier to take than enemas....
I have had tinnitus since 1988. 24/7/365. No change when I got UC around 2012....
3 to 4 bowel movements per day, and rarely seeing blood does not sound like severe UC to me. Did your gastroenterologist diagnose you with severe UC?...
I think the insurance companies maintain there is insufficient information that the test results are useful in guiding treatment. Ask Prometheus to provide you with ANY data regarding the accuracy or...
Google "medical transport" for your city. Professional services routinely transport patients who cannot drive (usually elderly) for non-emergency medical appointments and procedures. I have used...
My GI recommended "Slow Fe", time release. 2 tabs per day....
I had a flexible sigmoidoscopy last month, with sedation. I've tried it without sedation; never again. The procedure center (not a hospital) required me to get a COVID-19 test 3 days ahead of the...
I continued to improve slowly on Entyvio for about a year. I suggest you stick with it a few more months. Btw, I got much better results with hydrocortisone enemas than mesalamine, without the side...
I have not had any loss of hair on my head in 3+ years on Entyvio. Some loss of hair on my legs, but that might be just aging. No obvious side effects, even when I went to infusions every 4 weeks....
I had mild abdominal discomfort, pressure behind my bladder for over a year. I wondered if I had an enlarged prostate. When I saw blood in my stool several times, I went to a gastroenterologist, and...
I know gastroenterologists generally consider calprotectin levels a reliable indicator of inflammation. However, I have had calprotectin levels that are "normal" while simultaneously having many...
A friend with UC told me drinking Lifeway Kefir with probiotics got him to remission. Didn't do much for me, though. It's cheaper than Visbiome or VSL#3, so probably worth trying....
Have you tried a low FODMAP diet?...
3+ years on Entyvio. No side effects. No issues with infusions. I never take any of the pre-meds. I think my experience is pretty typical....
I don't think it's clear that Entyvio increases the risk of COVID-19....
I got my GI to write a note saying my UC would make jury service difficult, which was true, as I could not be sure I wouldn't have to run out of the trial room due to urgency multiple times a day. I...
My GI is scheduling flexible sigmoidoscopies as needed for June. He told me they are not considered "elective" procedures, so if the doctor decides one is necessary to diagnose the state of disease,...
Lactase for dairy products. My GI recommended Enzymedica Digest Spectrum for everything else. Avoiding FODMAP foods can also help with gas....
At least you could get a test. In LA people with mild symptoms are denied tests. Insufficient test availability. Good luck....
The tough question is going to be "When do we get people back to work?" Presumably when the number of cases seems manageable. But we don't have the test capability to know what are the number of...
Congratulations! Hope you can get out and about in a socially isolated way. Nothing like a long hike, run, or bike ride to beat cabin fever....
Here's how to be a hero: https://www.gocomics.com/viewsmideast/2020/03/21...
I don't think such supplements are commercially available. In the study, the mice were administered the SBAs rectally....
Some promising research: Secondary bile acids (SBAs) are reduced in UC J-pouch patients vs controls Reduced Ruminococcaceae bacteria in UC pouches is associated with SBA deficiency SBA...
I guess it depends on what is causing the pain. Does it feel like cramping? If so, maybe antispasmodics, e.g. Bentyl aka dicyclomine, might help. Could be diverticulitis, and totally different...
I'm 4 years on Entyvio. Started with infusions every 8 weeks, went up to every 4 weeks and now back to 8 weeks. For about 6 months I had a very mild rash on my forehead, which might have been due to...
I have always been suspicious of the benefits of the dozen biopsies done with my colonoscopies. Hard to imagine that poking a lot of holes in the intestinal lining is good for you. I always feel...
Have you complained to your employer? If they are specifying the pharmacist, the pharmacist might pay more attention to the organization that pays them....
Those of you on Entyvio may be interested in this experience with measuring Entyvio levels in the blood. I was taking Entyvio via infusion every 8 weeks (300 mg). My gastroenterologist recommended I...
Pine88, I had very active UC for several years, not helped much by oral mesalamine, mesalamine suppositories, mesalamine enemas, imuran, prednisone, Remicade, or Humira (or various diets, herbal...