Recently diagnosed

Hi everyone,

I was recently diagnosed with colitis at the end of July when I was asked to have a colonoscopy due to weeks of bloody stools. They are not sure if I have ulcerative colitis or Chrohns but I was just told it it is all treated the same. Finally got in to see a specialist this past week who put me back on prednisone and now on Asacol. I will be on prednisone for a total of 5 weeks after the next 3. I was put on Asacol for the next 3 months. Have had horrible reactions to prednisone. Insomnia, hot flashes, acne, and jitters. I am down to 20 grams right now tapering off by 5 grams every few days. Recently had bad heaches. Not sure if it is from the Asacol or what.

I am 28 years old and this condition has been horrible already. I have been sick on and off all summer. Just wondering if anyone else has had success with Asacol in treating this or what your experiences may have been. I would really like to talk to someone who knows what I am going through.

Thanks!!

thanks for the reply. I am feeling much better tonight from when I orignially posted. The worst thing about having this is the constant ups and downs of feeling good then not so good. It's a never ending roller coaster. Sounds like you have been through a lot!! I know the last few weeks have been trying for me. I ended up in the hospital 2 weeks ago though they don't think it had anything to do with the colitis. My body was numb and I couldn't move for about 2-3 hours until they gave me a muscle relaxer. it was not fun!! Has been a difficult road.

I hope to gain some insight from this forum and talk to others who know what I am going through. I have already done some reading and can relate.

Thanks for the welcome.

I have learned so much in the past two years and it has become easier. I now can say "I know what that is. I've experienced that before. I know how to deal with it. I can do this." So even though it still isn't fun and certainly isn't something I would volunteer for, I am much much better able to deal with the roller coaster. I also have been able to help a number of friends and family deal with their own medical issues. They comment that I know so much about drugs, how to navigate Doctors offices and hospitals, and spot symptoms before they get out of control. I only tell them that I would really rather not know what I know because it has come by hard first-hand experience, BUT I am very happy to help someone else and pass on encouragement! So please be encouraged!

Celebrate every minute you feel good and be thankful that you have the health that you do have (because it could be much worse). Glad you are feeling better tonight!!

Asacol worked for me while I was on prednisone but is completely ineffective since my case has been so severe. I've been taking its counterpart pentasa however and, though it takes a while to take effect, it seems to be working so far. I feel a lot better with it. Granted, I still take prednisone and a number of other medications so...But my experience with asacol has basically been that it's useless.
Sorry to hear about your summer...I had the same thing happen :( I hope you're starting to feel better...

I was on Asacol for colitis for two years. During that time I had some occassional gas pains, but never any blood in bms, no mucous, very little d, and was actually constipated. I was also exhausted and felt run down all the time, barely had the energy to go to work, much less enjoy life. I got it into my head that I was allergic to the Asacol, so my doc and I had me taper off it. Big mistake for me. The flare that erupted after being off the Asacol for a week has been terrible. Its been three months, very little progress has been made in controlling the flare. I started on prednisone again last week, which has reduced the number of bathroom runs, but no noticeable change in the quality of my bms. BTW We weren't able to prove an allergy to the Asacol, but at the time I was in pretty heavy denial of having UC. I didn't recognize that my Asacol "side effects" were also common complaints of UC sufferers, regardless of their meds! I'm trying out Lialda now, different med in the same family of 5-ASAs. Hopefully the Asacol will work for you, and you'll be feeling better soon. If so, stick with it.

It sounds like the headaches are from the Pred withdrawl, but the other problems definitely sound like Pred side effects. Unfortunately I'm allergic to Asacol (all the 5-ASA's actually) so I can't give you my personal experience with it, but a friend/former hospital roommate/schoolmate was on it for years and it did wonders for her. Pred is the first thing docs go for, and it's great for some people, but evil for others. Since I'm allergic to pretty much everything worthwhile, the docs relied on Pred to help me through my rough times (which have been often), but over the years the side effects have outweighed the good that it could do (how am I supposed to get better when I can't sleep for days??), so that has been abandoned and placed on my "allergies" list. Give Asacol a shot, keep in touch with your doctor. I've found that when I'm flaring an antibiotic like Cipro or Flagyl or Levaquin helps out.

This definitely isn't a fun disease. Sometimes it will rule your life, sometimes you won't give it a second thought during the day. I hope you feel better soon. This forum is a great support group, so don't hesitate to ask any bizarre question you might have, there's gotta be someone with an answer.