Recently diagnosed

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Tainted Butterfly
New Member

Date Joined Sep 2008
Total Posts : 6
   Posted 9/11/2008 5:24 PM (GMT -6)   
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.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 9/11/2008 7:09 PM (GMT -6)   
Hello and welcome to the Forum! I haven't taken Asacol but I'm sure someone will be by soon who has. I just want to say that it gave me great comfort when I first found this Forum to hear several members say that the first few years are often very rough. Once you get a correct diagnosis and find the right combination of meds, the crisis experienced in the beginning calms down. And I am happy to say I am experiencing that right now! It will be 2 years at Christmas when I had an enormous peri-rectal abscess and infection that nearly killed me. I was so very very sick for six months!! I had another nasty abscess a year later in January and a small one in May. I can read the signs now and was able to catch the one in May early. I went through trying drugs (found out he hard way I am alergic to Remicade and Humira) but 6MP appears to be working. I feel so much better now. I know I will never be what I was before, but I am feeling better than I thought I could!! I'm sure the future will have ups and downs, but I feel much more able to deal with it.

So please remember that though you may be in a rough spot now, it will get better!!!! Keep reading this Forum!!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.

Tainted Butterfly
New Member

Date Joined Sep 2008
Total Posts : 6
   Posted 9/11/2008 7:14 PM (GMT -6)   
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.

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 9/11/2008 7:26 PM (GMT -6)   
Hi and welcome to HW!!! This is a great board with lots of information. I think you'll find most of us understand what your going through.
I didn't handle Asacol but loved 6mp when I was on it. 6mp put me in remission for about 6 years. I can't go on it again though because it caused me joint pain and I have enough of that without 6mp that I don't need more. LOL I just got off prednisone and currenly on Methotrexate. I have been flaring since April so just trying to get things back under control.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone-  I am off of it!!   YAAHH!!! :-)   
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg every day
                           Wellbutrin twice a day
No Surgeries

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 9/11/2008 7:29 PM (GMT -6)   
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!!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/11/2008 7:35 PM (GMT -6)   
Hi and Welcome perhaps you are tapering the pred. too fast. You could look up prednisone withdrawal . So glad you joined us here. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 9/11/2008 9:52 PM (GMT -6)   
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...
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 9/12/2008 9:04 AM (GMT -6)   
I have been on Asacol for a few years now and it is the only Crohns med I use and it works well for me.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined Dec 2006
Total Posts : 517
   Posted 9/13/2008 2:43 PM (GMT -6)   
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.
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 9/13/2008 6:53 PM (GMT -6)   
Hi! Welcome to HealingWell! Sorry you have to be here though, although this is WORLD CLASS support. You make friends very easily here. You got hit at about the age I started getting flares bad ( was dxd with UC in feb 92, dxd with CD in august of 93..) for a year or two before I finally sought help for it. It WAS horrible. But now it seems long ago, though this DD has thrown me a curveball or four.


New Member

Date Joined Sep 2008
Total Posts : 12
   Posted 9/14/2008 5:16 PM (GMT -6)   
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.
25 years old
Diagonsed in Jan 1997 with Crohn's Disease
Sick since Nov 1995
Diagnosed in June 2005 with Osteoporosis
Current Meds: Humira pen every other week
                    Methotrexate 25mg every week
                    Folic acid, multivitamin, calcium daily
Previous many!

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