Diagnosed with UC on Tuesday. Have some questions

Glad to see this forum.

I had some blood in my stool about 1.5 months ago.  It progressively got worse and worse until no poop was coming out, only blood.  A little concerning to say the least.  I had the colonoscopy on Tuesday and was diagnosed with UC.  Wed morning they started me on 40 mg of Prednisone and an antibiotic. 

What has been your experience(s) with how long this steriod takes effect?  I started Wed morning and Thursday night and all day Friday I was on the toilet every 1-2 hrs.  This is the worst its ever been.  The urge to go comes on very fast and very urgent.  Then after I get done, it feels like I have to go again right away.  Blood is still present.  I've been eating a low fiber diet, in reality I've been hardly eating nothing much at all to try and give time for healing.  I'm concerned that this is not getting any better.  It's only been 4 days now of the steriod, but it seems to be a fairly decent size dose.

Also, are you guys continually on some type of steriod or med, or when the flare ups go away, is it more of a diet restriction?  I don't like the idea of being dependant on some type of med for life.

Thanks for listening.

Gilbernick, I'm sorry you needed to find us, but glad you're here. Welcome to HealingWell. You'll find a lot of good information in the resource sections here, as well as from the members.

Your introduction to UC sounds classic to me. There are several classes of medications used for UC. Steroids are used to try to achieve fast relief. For me they always began to show improvement within a couple of days, but for some people they will take longer.

Another category of drugs are called 5-ASA's (Asacol, Colazal, Pentasa.) These are the mainstay of treatment for most of us. Many people will achieve remission with only one of these. Generally doctors recommend that we continue to take them even when we are in remission.

For many of us, rectal medications taken in the form of enemas or suppositories are a key weapon against UC. Because the oral medications may not reach the rectum in sufficient concentration to be effective, applying the medication directly can be very helpful.

Steroids are recommended for short-term use to bring a flare under control. Most docs don't like to use them for longer-term therapy because they have some pretty serious side effects when used for long periods.

Immunosuppressants such as Imuran (Azathioprine) and 6-MP may be used when the 5-ASA alone doesn't produce adequate results.

Biological medications are one of the newer weapons against UC that just doesn't want to quiet down. These are drugs like Remicade, Humira, Orencia and others. Some are already approved in the US for UC, while others are in the testing phase. And there is a tremendous amount of research being done into new therapies.

Also, many people on the forum use non-prescription helpers such as probiotics, slippery elm, turmeric, etc. or special diets. What works for one may or may not work for the other.

One frustrating thing about UC is that everyone is different, different approaches to treatment work for us and sometimes it takes a while to find what works for you. Another frustrating thing is that because it's naturally a condition with remissions and flares, it can be hard in the short term to really know what worked.

Your feeling of constantly needing to go is called tenesmus. It's caused by the inflammation in your rectum and is very common during a bad flare. Some people find relief from sitting in a tub of warm water, others from ice packs. Others use ointments with anesthetic qualities. It's very unpleasant, but it will go away when you're in remission.

Some information to ask for from your doctor: where is the UC located in your colon. For some of us it's proctosigmoiditis (just the lower end of the colon and the rectum). Others have involvement in their entire colon. Also ask the severity of the inflammation. It isn't a bad idea to ask for a copy of the report from the c-scope for your own records.

We all know what a scary time this is for you because we've all been there. It helps to educate yourself about your condition so you can be a partner in your own treatment. Also, we're all here to provide information based on our own experiences and support during the bad times.

Thank you for the replys.  I'm checking in with the doctor on Tuesday.  Only thing I know right now is that my entire large instine was very inflamed but nothing in the small instistine.  The antibiotic was a precaution against infection.  Funny thing is that my general doc first diagnosed it as a anal fissure.  I wish I would have seen a GI doctor before I did and maybe this flare wouldn't be so bad.

Thanks again for all the help.  The breakdown of the meds/treatments were exactly what I was looking for.  I realized w/in the first 10 minutes of researching this disease there was no specific cure (except surgery) or med that would help everyone.  That's when the "oh sh@#, this is really serious" thought came rushing into my head.  Knew I was in it for the long haul.

 

gilbernick - The first two general doctors I saw diagnosed me as having just an anal fissure, even though I was having horrible stomach cramps. One of the doctors said it was "just the stomach flu" and an anal fissure. I wish I could have seen a GI sooner too.

Hang in there.