New to the Forum and need some encouragement

Hi everyone,

I am new to the forum--just joined today actually.  I have never spoken to anyone else who has UC, so it's amazing to see how many there are.  I have had IBD pretty much my whole life.  However, I have been bleeding consistenly for the past 3 years and was diagnosed with UC.  I have been through a ton of different meds (Rowasa, Lialda, etc) and nothing has helped.  It recently got worse and the bleeding won't stop.  I was put on prednisone for 1 month and it worsened yet again so I tapered off.  Right now my GI has me on 9 Colazal a day and steroid enemas.  I'm finding that the Colazal makes me extremely nauseus and tired.  Even now, I am still bleeding and have incredible amount of pain.  I'm frustrated because my GI keeps calling me "special" because nothing seems to help.  I don't want to be special...I recently got married and I have been nothing but miserable because of my condition.  It's hard for me to go anywhere or do anything--and at 24 (or any age for that matter), it's no way to live.  I cannot remember the last time I felt good.  I have a hard time getting answers from my Dr., like what the next step is if this doesn't work so I feel kind of in the dark.  Any words of advice, knowledge, anything?  What has it taken for some of you to improve and how long did it take?  I need help.

UC Diagnosed March 2000

Hydrocortisone enemas 1xday

Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

I was surprised when I joined that there were so many sufferers as well.  It sounds like you have been having a rough time, I can relate.  I know what you mean when you are frustrated with your doctor.  I am experiencing that very same thing today in fact!  I am not sure when the last time was that i felt good either.  The only thing I tell myself is it could be worse.  I try to think positive and recently started doing yoga to ease my anxiety.  I am currently on 12 asacol and canasa enemas for the constant bleeding and urgency.  Have you tried those yet?  They do seem to work, unfortunately when I went off them last time the flare up came back.  I am going to use them longer this time. 

I wish I had some more advice to offer you but I am new to having UC and are with you in frustration!

Would love to chat sometime,

Take care and think positive

Amy

Hi from another new member!  I was really glad to find this forum, too...it is always comforting to know that you are not alone.

I have had UC for over 11 years now, and for the past 5 or so I have been successful controlling my flares with hydrocortisone enemas and Colazal.  I have UC throughout my colon, but most of my recent flares have been isolated to the end of my colon - where the enemas can reach.  As I understand it, if your flare is too far up into your colon, the enemas will not be able to get up far enough to work.  Do you know where your inflammation is worst?

Unfortunately, I am now in the middle of a major flare that is not responding to enemas, so I am back on Pred and they are looking at Remicade as another option. Still, I did have great success with the other treatments for several years -- and an enema beats an oral steroid any day in my book.

I agree with the others, however, you need to find a doctor who will work to get you better and not just pass you off. 

As far as exercise, I am in too much pain and too tired when I am flaring badly.  When it goes down and during remission, however, I am really active - cardio, abs, weights, you name it.  I think it does a lot to keep me healthy and a little less stressed.  I am about to try accupuncture and think yoga could be perfect for the stress, as well.

Good luck!

Kris2336