Might be glaring again

My prednisone taper is down to 5 mg a day and I’ve had almost diarrhea (mushy stools) for about a week now. I’m currently on vacation so I’m not going to judge my condition yet. Eating out every day probably doesn’t help. I’m eating well cooked steel cut oats with honey most days and soup when it’s available. Yesterday I had sourdough bread with clam chowder. I didn’t eat it all but probably ate too much. Last night and this morning I’m exhausted and I felt nauseous with tummy pain last night. I see my GI at the end of November and because I have been avoiding wheat for the first time in my life, and I ate lots of bread yesterday, I think I’m going to ask my doctor if we can rule out celiac disease. I want to spend today in bed, but we have one more day in Disney. The fatigue is unbearable. I bet I’ll feel sort of normal for no more than an hour today. I’ll do the haunted house and make my husband happy by choosing his favourite rides. I am so sensitive and aware that all the people around me think I look normal, and don’t understand how difficult this disease is.

That's a tough spot.

Over the years, I got very comfortable with acting on the start of a flare. For a long time I wanted to rationalize it, and try to stop it by other methods. It usually made things worse.

Don't wait. Get up early and go to a med stop. Walk in and confidently tell them you are a UC patient and a flare is starting. You want IV steroids to tamp down the symptoms until you can get back to your GI. Give them your GI doctor's name. Give them a limited history of your condition. Convince them you have and know all about your disease.

After I started doing that, I never had any problem getting through a tough spot like that. Vacation, business trip, whatever. Be your own advocate. 9 times out of 10, the doctor on duty is happy to have a knowledgeable patient that comes through the door knowing what is going on and what they need.

And you get to go ride whatever the hell you want at Disney.

I completely disagree that you need IV steroids. You are having very minimal symptoms right now and IV steroids are pure hell side effect-wise, for me at least (they make my emotions go absolutely insane...bawling in the hospital, etc.). I also don't know any doctors here that would appreciate you marching in and telling them you want IV steroids (you can know what you want, but you still have to play the game and be tactful with most doctors because most don't really like being told what to prescribe to a patient). I can't imagine that ever happening with IV steroids in the U.S. unless a hospital decides to admit you. Most ER docs know nothing about UC. Last time I went to the ER, thinking I'd be admitted, they gave me one dose of fentanyl (which barely touched my pain and only lasted maybe 2 hours) and 5 (yes, 5) days of prednisone and sent me on my way!

Ruling out Celiac Disease is a good idea, but I doubt you have that because you would be extremely sick after eating any gluten from what I've read. I did have it ruled out when I was first diagnosed though.

You could up your pred back up to 10 mg and see if that helps. What other meds are you on again? I forget if you are on rectal meds? You can ask your doctor for Zofran for nausea. It helps sometimes.

P.S. Love the post name typo.

Thank you everyone I’ll be back home in a week. Not that my GI is available or anything, but if I get worse I’ll insist on a phone call. medication with me is pentasa 500 mg (1000mg 4 x a day), salafalk suppositories 2 x 1000, and about 5 5 mg prednisone tablets left. I’ll be ready to get help quickly. I find if I stick with well cooked oatmeal and soup, and rest, I don’t have pain.