diagnosed last week

I had crazy fatigue after being placed on Colazal. I was an active triathlete before being diagnosed so I only attribute the fatigue to the meds. I was so exhausted but I could not sleep, yet I could not get out of bed. The fatigue wore off after about a month. Like you, I'm still figuring this disease out (diagnosed 8/08). I thought I read that the disease spreads in about 1/3 of the cases (don't quote me). The shock of the disease is now subsiding and now I am in the "learning how to manage" phase. It is nice to read others experiences.

Whoa! Why did your doc put you on AZA already??? This is an immune suppressing medication and usually reserved when other conventional Uc meds fail. Have you ever given rectal meds a try yet?

Hey UP,

Mis Dx'ing is common as others have said, especially when symptoms are mild. As "Learningtoadapt" name implies you will get better and coping and dealing with UP over time. I am a little shocked though that your doc prescribed azathioprine already, I worked my way up after dealing with constant flare and once I found I could not taper off Pred without symptoms coming back.

Thanks to everyone who gave me some feedback. Yesterday I was feeling almost "normal" again & today I can barely do anything - my brain feels like it is full of cotton candy. The diagnosis was made during a colonoscopy, moderate to severe ulcerative proctitis & the mesalamine is an enema. The doc said that he prescribed the meds to get it into remission more quickly. I wondered about it, but just after the procedure I didn't have much info about anything. It's only after the fact that I started putting 2 + 2 together about other symptoms that were already present. Had digestive troubles (often just an uncomfortable full feeling disproportionate to the amount eaten)in '07 & at the same time had a gall bladder attack - that was resolved with surgery - but was on an almost no fat diet for a month prior to surgery, which also relieved the digestive issue. Felt really good for almost a year and then last summer the uncomfortable feeling + blood + mucous, and to top it all off I had canker sores one after another (1 or more at a time) during the same time frame. So maybe this has been going on for a couple of years. Had a routine colonoscopy (the over 50 initiation into the world of gastrointestinal procedures) less than 5 yrs ago - no problems at that time. I guess I shouldn't complain too loudly, since some of you have been dealing with this for a long time and with far worse symptoms. But at this point the meds are making me feel worse than the disease.

"But at this point the meds are making me feel worse than the disease."

I sure know how that feels.  I have quite a few weeks to convince my doctor of that!  Finally, he agreed that mesalamines were out for me.  I felt like I had the flu - didn't want to get out of bed - worse than UC ever was.  I will not take mesalamines again.  That limits the options - especially the ones safer for us.  I had to go on prednisone to stop the bleeding, etc.  Probably going to try immune suppressants next.  We are all different but I refused to use medications very long that made me so sick.  It was not like a couple weeks of sick and then better - it was gradually getting worse - every day!  I gave them a fair time.

ElaineNY

i have to agree with what others are saying about the aza you are on. you definately want to work up to the immune suppressing drugs as the side effects can be signficant. the short term effects have been outlined but it is the longer term effects of these drugs that are in a bit more question (ie. do they set you up for higher risk of cancer etc.) personally i have always choosen the least invasive type of medicinal therapy possible - often stubbornly against my docs wishes. i had to finally admitt this year that the mesalamine in all its forms was no longer working for me after having a crazy flare and so i have moved on VERY RELUCTANTLY to steroids - i konw i have been one of the lucky ones who has responded well to most meds - my flares are nasty but they can be well controlled so far. i have had uc for going on 10 years and during that time i have had a number of docs as well and therefore have had many differing opinions on how to treat my illness. i would urge you to become an expert about your particular disease, namely how uc effects you in particular and what drugs/lifestyle changes work for you - everyone is different. also, really educate yourself about all the drug options and decide what you are willing to do and what you will reserve for later. finally, i think that some natural meds help me and that too has been an exploration - one that traditional medicine cannot help you with. good luck and chin up. jo

at this point there is little uderstanding of what causes uc and so there is even less understanding of how to prevent it. sorry for the bad news about that. one bit of good news is that if only one parent has uc, their children only have a 15% chance of having uc as well - pretty low. jo

The doc never did reply - I even tried snail mail- gave him my phone#, email, P.O address - nothing in reply. So I quit taking the azathioprine in the a.m. - feel much better now - not half asleep and fuzzy headed all day. So at least I'm getting 1/2 the former dose. I sure don't feel very confident about going to a doc who won't reply, not even through his nurse. Don't have many options though because of the insurance.

My only medical option for now is to use the emergency room if I get sicker. I have a routine appointment to see a nurse practitioner in 2 weeks - will ask about blood tests, etc & about possibility of referral to a different GI. My bleeding has mostly stopped for now, but just started to get a bit of mucous again.