Just got back from colonoscopy..

well, at least you know how bad it is so you can only improve, right? i was diagnosed with severe pancolitis last year and i'm assuming it's better than that now. i haven't had another colonoscopy yet, but i feel better than i did at my worse. hopefully, prednisone will be able to heal you right up.

I agree with fruitgirl. Enemas are key in keeping me in remission. While flaring I do them nightly but in remission once or twice a week.

I didn't start on pred until mid-March, and I was diagnosed at the very end of January. I wanted to try to get into remission w/o restorting to pred, and was nearly there, until I caught a tummy bug from my son that stirred everything up again. Or maybe it was a relapse. Who knows.

At any rate, when I started the pred, it made a huge difference immediately, but everyone is different.

Have your sympoms improved at all? How bad are they right now? How much Lialda are you taking?

The first time I was on pred it took about 1.5 months to begin to get relief and I was on 60mg of pred (the high dose was for my kidneys too, it was a dual purpose). Pred always varied with me on how quickly it would work.

It sounds like you are pretty sick right now but don't lose hope (I was having 25+ bm's w/blood a day at one point)! The important thing is you have a diagnosis and a plan. I agree with taking mesalamine enema's those really helped me.

For me it is usually 5 steps forward 4 steps back, it can be an emotional roller coaster (especially with pred!) and it does take time for your body to heal.

Keep a journal, do a lot of research and ask your Doc plenty of questions and write down the answers! Don't be afraid to call before appts if you are not getting better, sometimes we just need encouragement.

Take care,
Beth

Thank you all for the help!

I do not have normal BM after over 2 years of treatment. My moderate pancolitis is now mild left sided colitis, and with rectal + oral meds I am getting something almost like soft formed or flattened stool about half of the tiem. Ther rest of the time is either D or redish mucus.

The time to respond and the degree of improvment is very individual. There are medications and some promising alternative treatments that go beyonf the usual rectal and oral meds. So I do not think you are yet on the brink of surgery.

Try to notice if any particular foods might be more irritating mow that you have UC. Make sure you are not anemic. Hang in there.

machina12-
When I had my first colonoscopy about 10 years ago, the GI said my colon looked like I had dragged it behind my car. Nice image!
She wanted me on prednisone...I refused. Second GI put me on Colazal and mesalamine enemas and it all dragged on over the years with me eliminating foods if I thought they were a problem and constantly hunting for bathrooms.

Anyway, if I knew then what I know now.......
I would have begun taking a strong probiotic, slippery elm powder, L-glutamine and a good multivitamin with iron along with the Colazal and mesalamine enemas.

Unfortunately, my doctor was not much help in suggesting anything other than drugs.
You can learn a lot from the posts on this forum and can ask your GI about getting off drugs like prednisone as soon as possible.
Best of luck

Thanks again for all the responses. Now that the colonoscopy is over with after weeks of waiting and being nervous I'm just going to spend a few days trying to not worry over this. What kind of prednisone withdrawals are troublesome? I shouldn't be on it more than 6 weeks. I usually have a normal bm during the day it's the darn mornings that I wake up with cramps and have d. It's like my food just sits there all night or something. I don't mind having to go with urgency, the part that bothers me is not getting nutrients and I need to gain weight but I can't if I'm having d. :(. Ughh

My doctor says to take a chewable multi vitamin because it is absorbed better.  So, I take flinstone.  I was diagnosed in March of 2009 with severe uc thoughout my whole colon.  After a couple of months of trying asacol and lialada and azathioprine(I am allergic to all) I was put on 20mg of pred from june 2009 until Nov 2009 I started remicade in July 2009.  My scope last year showed only mild inflammation in the right side of my colon.  My scope this year showed I have moderate active UC thoughout my whole colon with eosiophllic coltis(so I have two things going on right now).  So, it is possible to get better.  I think once I get this eosophilc colitis(which is an allergic reaction from something) under control my scope will show my uc is better again(I hope) I have done really well on the remicade for almost three years now.  I go D 4-6 times a day and I have been like this since starting remicade I still have urgency.  Hang in there.  I know it is scary.  What works for some doesn't work for others.  Keep us posted after your appointment.