How do you know when you have an ALL-OUT flare-up and not just a bad day???

I am newly diagnosed with UC and have been off steroids for 1 month. I have been having some blood, some mucus, some cramping but not everyday. Now, I don't know if it's me being paranoid but I think the pain is there more often. How do you know when you have just eaten/drank something bad or if you are having a flare-up? My nurse doesn't seem very knowledgeable and it takes days for my doc to call back with no additional info. His only response is to change my meds. When do you call for steroids?? At what point is a little blood & mucus, too much??? Sorry... I'm just so stressed about having to call my doc over every little thing and tired of getting "I don't know" answers!!!

 

If it's been going on for a few days it's probably the beginning of a flare.  What dosage of Asacol are you on?  Have you ever tried the mesalamine enemas - like Rowasa?

Rowasa is the same medication as Asacol just in enema form.  It treats from the other end. Most of us try to use both oral meds and enemas to treat our flare.  The theory is that if you treat from both ends you will heal faster.

Back to your original questions, I know I'm probably just having a bad day if I recognize I did something to cause it, like eat too much fiber (like nuts or big salad) or drink alcohol. Those things make me bleed worse pronto, but usually I can recover back to where I was before (flares are not caused by food).

Your doc should be more responsive than that. I also only ever talk to the nurse, but she calls back within hours or explains why she cannot. Granted, it's always only to confirm calling in an Rx that I request, after all these years! If you change docs, be sure they know why! Maybe it will help the next patient.

I would tell the doctor you are unhappy with him, be honest, but firm. Its your life and you need to know. It sounds like the start of a flare up and you need to act quickly to get it under control. It can sometimes start gradually or quickly, eitherway you need to get it sorted out.

Diagnosed with UC in 07
Recovering from a recent flare
10mg Prednisolone
Pred Foam Enemas
Fresubin Energy Drinks
Folic Acid
4g Pentasa

I don't usually call my doc until things are "bad" for at least three days. Bad to me is a drastic increase in the number of bms - say from my usual 2-ish to 6 or more - where I am definitely seeing blood or red mucous, and where I am having cramping and/or rectal pain.

It takes some time to learn how your body reacts. I know when I was first dx'd I called my doctor about everything! I now know that a couple of times when I thought things had gotten worse was just because I ate too much the day before or got too tired. But you can't know that at first.

Rectal meds are a definite plus! Yes, they can be intimidating, but they can really speed up your healing or keep you out of a flare. I would suggest reading through old posts to see how people have responded to questions on rectal meds - they should be your first line of defense and used before resorting to prednisone.

Best of luck!

Enjoy ur vacation!!! Try not to stress!!!

Hi, I'm new on the forum. I am in total agreement with searching for a new GI Doc - if you've landed with one who seems to care little, or doesn't have any genuine objectives to helping you recover quickly from flair-ups - keep shopping GI Docs. I lived near a Cleveland Clinic when I was first diagnosed with UC in '98.
Great outfit - but a 'teaching' hospital - I went through about 3 Docs in 3 years...got to the point I was telling them what treatment I was on, reminding them what we talked about last, and when I needed bloodwork, etc. My wifes Gyn recommended a local Board Certified GI with a great reputation who I was not familiar with - 4 years later, I still could not be happier. If I can't see him, his nursing and doctors assistants are all pros and not much turn-over...all seem to stay and are all genuinely concerned with my case. If I have a question, I generally get a call back in a few hours, also, the suggestion was made to me (can't remember where i read or heard it ) to go with a GI Doc who is also a Board Certified surgeon. I think a good idea, in case one needs surgery later.
Finally, a suggestion for a product that flys below the radar - but helps with the mess of UC. As a Bathroom remodeler and Designer, my wife goes to the Nat. trade shows. Check out the 'travel washlet' at www.totousa.com. "The portable washlet allows you to carry along the innovative technology of TOTO's washlet seats. From the office to your travels. Enjoy the luxury of your warm water cleansing at a push of a button. Just fill the water reservoir and extend the wand. Two different washing modes - regular and soft - ".
A compact and easily carryied devise that you fill with warm water in any bathroom and has a spray nozzel that puts out water similar to a bidet. I've used it for 7 years now - at home and when I travel - especially if i have a flair-up, it's a life saver when you are going 15 times a day!

SS1;
It's the TOTO 'portable washlet' you want to check out. the seats are amazing but expensive for most. The portable washlet, about $100. or less. You will thank me - as I thank my wife for discovering the product.
Wishing you all the best.