Posted 1/30/2019 3:35 PM (GMT 0)
UC is a disease that takes a lot of trial-and-error to treat us, our doctor's say try this for 6-weeks, and regroup and try new things if they are not right the first time. And toward that end, and to reinforce this statement, it is not uncommon for our doctor's to not get the treatment right the first time, the second time, and sometimes even the third time. As a new patient this can be very frustrating, as we expect to feel better quickly (I WANT to be helaed yesterday, this sucks!). However, you're going to need a lot of patience, and play the long-game. Healing might take a series of months, with no easy-button or instant-gratification to be found.
Yes, we all have a complicated love/hate relationship with prednisone. We love prednisone as it makes us feel normal again with rocket-launch speed. We absolutely loathe the side effects, with every fiber of our being. I call prednisone "the devil's tic tacs," which describes well what it is: you feel better but at a price. Yes, there are side effects that are temporary and annoying. However, when you/I are prescribed prednisone it is a necessity, our disease severity warrants it, and the benefits of taking pred in that condition far outweigh the side effects.
However, know that prednisone is exactly what we need at times, so you should be compliant with your doctor's orders. I like analogies, think of prednisone as a Crutch. When we break a foot/leg/ankle, we use a crutch to help us get by while we heal. Prednisone works the same, exact way. Pred enables us to function temporarily while our other medications are given time to work. We all do stop prednisone once we are ready, and our other safer maintenance medications are used thereafter.
But yes, given what you describe in your severity of UC, I would expect either thiopurines (azathioprine, imuran, or 6mp) and/or biologics (remicade/humira) to be within your near future. It's important to have a discussion with your doctor about risks versus benefits of the varying treatments. Many of the treatments we take have low odds of adverse side effects (except for temp pred which are guaranteed), and high chance of benefits. You have to be cognoscente of that, weight the risks versus benefits and choose the path that makes the most sense.
UC is for life, we try to regain our own quality of life through maintenance medications with chronic illnesses like UC. I know as a new patient to UC, it is a lot to wrap your head around, it's all a bit scary and confusing. What you should know is you will get better, as our treatment goal is to get us into what's known as a remission. In a remission, we are essentially pre-diagnosis. When I am in a remission, I poop once a day without any UC symptoms (no urgency, no blood, etc). I can go about my day without giving a passing thought of having UC. And that's where you will be headed. Keep your eyes on the horizon, not the here and now. You will get better, survive and thrive despite having an UC. Other than the inconvenience of an occasional flareup (what you are experiencing now), we live normal lives. We pursue higher education, have successful careers, families of our own, and pursue our hobbies and dreams.
Hang in there, it will get better!