Posted 1/27/2021 7:47 PM (GMT -6)
Welcome, and sorry you're here. Not a club anyone wants to join.
#1. There are 100's of proposed therapies for UC. A lot are scams; others are completely unproven. You can find recommendations cure/treat UC by eating this food or that food, or by avoiding these kinds of foods, or take this herb or supplement, traditional Chinese medicine, probiotics, prebiotics, antibiotics, et cetera. Some of it may be harmless, but be careful not to get sucked into trying remedies not backed by empirical data. Because you can spend YEARS trying all these proposed remedies while your disease either doesn't improve or gets worse. I don't doubt that some of the "folk remedies" may work for some, but probably not for most. Focus on the highest probability approaches, the ones backed by data. What out for "Dr. Google" since that guy can lead you down winding paths that are dead ends.
#2. Similarly, don't get too excited about legitimate scientific studies that are either based on animals, or very small samples of humans. You could fill your house with studies that show an effect on UC in mice, but which don't get replicated in humans. Or early studies that look promising in humans, that don't reproduce with larger populations. Focus on therapies that are proven effective in large-scale human trials.
#2. Listen to your gastroenterologist, and be proactive to contact them when things change, or if you're not improving. If you don't like your gastroenterologist, or don't trust them, get a second opinion from another gastroenterologist. Or a third. But stick with medical professionals.
#3. The standard approach in UC is "step therapy," starting off with one set of drugs (e.g., ASA's like mesalamine) and "stepping up" if those don't work to biologics. A lot of people fear the step up to what they perceive as "more powerful" drugs. But (in my opinion) step therapy is largely driven by insurance companies who want patients to try lower cost drugs first. Biologics work well for a lot of people, so if your initial therapies aren't working, don't be too hesitant to "step up". Assuming you have insurance, since the unreimbursed cost of some these can be $10K's per year. A lot of UC patients are worried about the side effects of "stronger" drugs, but my impression is that side effects are pretty rare (and reversible) with most UC medications. I'd say the exception is prednizone, which has a reputation of giving a lot of people unpleasant side effects. But steroids work well for many as a temporary treatment.
#4. Everybody's UC is different. Nothing works for everyone. And what works for you in 2021 might not work in 2025. If you're lucky, you'll quickly find a therapy that works; many do. Or you may go through a dozen medications before you find one that gets you to remission. It's a crap shoot. But just because nothing has worked yet, doesn't mean the next therapy won't make a huge difference.
#5. Again, everybody's different, but I would recommend that you not "hide" your disease. It can feel embarrassing, since your friends and neighbors probably don't want to hear about your bowel problems. Not everyone is understanding, and very few will actually get what you're going through. But I think it is generally better to open with people about your condition, especially if it's going to effect how and when you interact with them. After I developed UC, I found out that several people I worked with closely had UC for years, and I never guessed. I wish I had known.