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Hi everyone! Hoping this is in the right place. I was recently diagnosed (end of Oct. 2019) with severe Ulcerative Colitis after experiencing some intense symptoms. I was put on 40mg of Prednisone and began taking Apriso to manage the inflammation. Everything seemed to work well and symptoms began to disappear. I have had none of the severe symptoms since the end of November or so, so under Dr's orders I began to step down the Prednisone. I'm currently taking 20mg daily, with the goal to be completely off beginning of March. I am scheduled to go to the Dr. this afternoon to find out which biologic will work best for me, but here's the challenge. This morning, I had a small amount of blood in my stool and some urgency. Nothing extreme, but enough to cause me concern. My question is this - what advice would you give a newly diagnosed patient who experiences an unexpected symptom? I'm feeling extremely anxious that this means the Dr. will up the Prednisone again, which has been pretty challenging to live with. Other than that, I'm feeling good today, with no other symptoms. If you have been through this, I welcome any advice you might have! Thank you!
Reply posted for ebennedum.
I can tell you that flare ups and small idiosyncrasies happen pretty frequently in the IBD world. In the beginning it is terrifying. You just want to get better and fix the problem all together. To this day I always worry if the slightest change in symptoms will spark my gastro into wanting to see me or run another test… I think we can all agree that the tests are the biggest pain the butt! I’’ve thrown myself into too many panic attacks over it. Blood in the stool is one of those concerns that are worth the doctor call, but it isn’t unusual. It can be as simple as you continuing the steroid another week because your body isn’t quite reset. Don’t freak out right away. Just know that so many factors play into IBD and so much still isn’t known about the disease. My numbers fluctuate at least once a year and in the beginning I would cry when I saw them. I kept thinking, “here we go again”. Now, a few years into this, I remind myself that personally (in my body’s situation) this can occur because of a cold, stress, anxiety, bad eating and sleeping habits. I chalk it up to a fluke and in some cases I have asked my doctor to wait a week and check my blood again. Ask questions, ask the doctors to repeat what they just told you so it really sticks with you. Take a friend with you to appointments – it helps. Symptoms come and go, keeping a journal helps cut down on the confusion and assists you in staying sane. You aren’t alone in the diagnosis. Laugh at the awkward tests and know that your symptoms are nothing new in this IBD world. Your body is trying to tell you something and you are working on understanding the language.