How long does it last???

Just curious. I am wondering if there is a typical time when things start to get better? I was in the hospital almost 3 weeks ago. Only stayed for 2 nights.

Currently taking prednisone and asacol. But really....how long does this go on???? I want to be "normal" again. I want to be able to have energy during the day. I want to be able to sleep through the night and not get up a few times to go to the bathroom. I want to be able to leave my house and get out and about.

I have ALWAYS been a very active and on the go person. Now I feel like I am a prisoner in my own home.

Feeling tired, frustrated, and alone. Just want a ray of hope.

At this point I am taking 20mg of prednisone. For the asacol I am taking 2 pills 3x a day (800mg per tab)

As far as where it is at...I believe it is in the left side of the colon. At least that is where the flare was when they did the colonoscopy. They didn't say that it was anywhere else.

waaaaaaaaay too long !

Ditto that you need to ask for some enemas.

As far as how long, well, that's a crapshoot. Everyone heals at different rates.

I can say that since reaching remission 4 years ago, I've been completely normal.

I'm not going to answer your original question, I don't think it's going to make you feel better.

q has stayed off prednisone by diligently using her meds and most importantly through very good luck...

To the OP, it sounds like you need a more proactive GI. You should not be tapering your prednisone so quickly if you're still having so many BMs per day that you can't leave the house. You're also on a pretty low dosage of Asacol. If I were you I would talk to your GI about being more aggressive with your treatment -- a great way to start with very little risk of side effects would be adding rectal meds -- and also get into therapy.

edit: Just to clarify, not because therapy will cure your UC (it won't, and I really despise everyone who has ever told me I got sick because of 'emotional problems'), but because being diagnosed with a chronic illness is a really really hard thing to go through and even if you don't realize it yourself, you can definitely benefit from having a professional to talk to.

I agree that you need a more proactive gi. Maybe asacol is not the drug that works best for you. For too many years I did the same low dosage of asacol with little change in my disease. I figured Dr. Knows best or he would do things differently. It was not until my disease had flared for so long (almost three years with no remission) that I developed a fistula. I changed my GI, drove to a larger hospital as I am from a rural area with a fairly small hospital and, changed meds to get some relief and got the proper treatments for my situation. My diagnosis was changed as the new GI did biopsies and found I actually have crohns colitis. I am now having a proctolectomy end of July as i don't have many choices to fix the problems I have now.

Through all of this I have learned that you have to be your own advocate, go to the Dr prepared with questions and don't leave until they are answered. For so many years i just "come back in three months and we will see how you are doing" "this drug needs some time to see if it will work" . Don't let things go too long before it is too late .

patience is the only answer. There is no quick fix. It is brutal and slow. I have been in a flare since December and I spent 7 days in the hospital. Still I am not where I want to be energy wise. My face looks like a basketball due to Pred, I have crazy episodes due to Pred, my sleep is so erratic. Still I just did my 3rd loading dose of Remicade so things are looking up. patience is the hardest part. Its not weeks but months to get this in control. Trust me you are not alone and I will go through this with you. Rectal meds did not work for me and in fact I was worse when I took them. I tried for weeks but everyday I did my enemas I was worse than when I did not. There is not one single solution that works for everyone. That is why it takes months to sort it all out

The rectal meds, mesalamine enemas (Rowasa is a namebrand) for me...did the trick! The Asacol alone helped a little...but when I added in the enemas...I got steadily better until all symptoms were gone. As my GI says 'the enemas are like blasting the medicine right onto the parts that need it!'

But, sadly, they do not work for everyone...but they are worth a shot for sure!

Best of luck!

Idiopathic basically means "no known cause". This means she had colitis in July 2009 and they could not attribute it to anything at the time which could cause colitis, such as a c-diff infection. After testing they finally decided a couple of months later that her colitis was caused by having UC. Technically you could say that she has idiopathic UC, because her UC was caused by "no known cause".

It is hard having to deal with this condition.  Everyone is very different.  2002, I had severe diarrea and dr thought it was just a bug.  After two weeks and losing 50 lbs, discovered I had a very resistant strain of salmonella poisoning.  In hospital for 4 days.  Afterwards was told that I had Ulcerative Colitis.  Dr put me on 400 mg Asacol 2x2 a day and Sulfasalazine 400 mg 4x a day.  I have had some flareups due mostly to stress.  Taking 40mg Paxil 1x a day, 5mg Xanax 1x 2 to 4 times a day as needed.  Allergic to Pred even the enemas.  Tried Asacol HD 800mg 4x a day for 30 days.  What a difference it made, as I was in a flare period.  Dr sent me to GI dr in 2011.  He did not approve of the Asacol and Sulfasalazine combo.  I tried Asacol at larger strength but did not work.  Went back to previous dosages and cut back on Asacol to 1 in morning and 2 at night.  Double back on the morning when having a flare.  I am concerned about changing meds now.  GI dr said I might have Chrons Colitis??  Not sure.  Going to get more info.

 

I've never been on pred for UC; I've been on it for other things and now I refuse to take it for anything chronic. My GIs have all been very understanding about that, and my current one hasn't even suggested it because he knows I don't want to take it.

Give the Asacol a little more time, and I would definitely try rectal meds (the most effective ones I've used have been mesalamine enemas and hydrocortisone enemas).

quincy said...
Pluot said...

q has stayed off prednisone by diligently using her meds and most importantly through very good luck...

<font color="#008000">q

Sorry q, but I think you of all people should know from everything we see here that it's a true blessing to be someone who gets and keeps remission from 5ASAs alone. There is a lot to be said for being responsible and consistent with our maintenance meds but plenty of people who are just as diligent as you end up gravely ill.

I put a call into the doc office. They are calling me tomorrow. I will be asking about rectal meds to see if they think that will make a difference. Ready to get out of my pj's and start living again. But the way I feel...it's not right around the corner. PRAYING that it is, though.

Family is not in our state...my mom wants me to come to stay with them for a while. But, I feel like it doesn't really matter where I am. Just need to rest and get better.

Praying....hoping....that it WILL get better. S O O N !!!!!!