Help! Newbie to CR & UC. flare up for 1 month
Fri, April 03, 2009 12:00 AM
I'm 25 years old and was just diagnosed w/ Cr and UC in Jan 09 but was having symptoms since Sept 08. No one knew what was wrong w/ me until i had a sigmond colonsocpy in Jan. I suffered for 4 months. Once diagnosed i was put on Asacol 8 pills/dy. I was doing well until the Feb 25th i started to have a flare up so the doctor bumped me up to 12 pills/ day. A week later i was going 20-30xs/dy and it was only bood. After awhile i was so sore around my stomach and my back, i was put on steriods 10mg 4xs/day (every week i get weaned off). Asacol was also changed to Pentasa 8xs/dy. Well 3 weeks later I'm still suffering. I DONT FEEL NORMAL. I cant even go food shopping. Now on top of the other meds the doc put me on 6MP and believes i should go back on takings steriods 3 pills/day. Which makes me nervous. I just need help. I dont know anyone else with UC & CR. I'm afraid to eat but am straving from the steriods (i GUess)
anflo430Joined Apr 3, 2009
Sat, April 11, 2009 12:00 AM
Reply posted for anflo430.
Sorry you are having such a tough time. Unfortunately, it's made tougher by all of the unknowns about this stuff. As someone mentioned before, you have to be very involved in your health and try different things until you start feeling better. Remision is the goal but better is always better. For food/ nutrition try fish, rice, chicken, apple sauce, bananas, soups without things like corn, peas and beans. Multiple small meals during the day (5-8). When I'm working on getting over a painful flare I replace the mid-meal snacks with something like ensure. Easy on the gut but full of the protein and vitamins you need. I also use a vitamin supplement called Emergen-C I really like because you mix it with water and so It gets absorbed into the body quickly and perks me up right away. Helps a lot with the nutrition and hydration I need every day.
Best wished for your health and finding the right medicines and foods for you. Keep fighting and you'll find an answer you can live with.
Joined Jun 27, 2008
Sun, April 05, 2009 10:47 PM
Reply posted for anflo430.
Initial diagnosis is brutal. Crohn's and UC are such finicky conditions, and they vary greatly from person to person. It took me two years to get on meds that really worked for me. It's hard, especially the first six months.
That said, there are two things I heavily suggest you do.
The first is talk with your doctor as often as you feel is necessary.
Secondly, if you feel something is wrong, if you think a medication isn't helping you, be insistent with your doctor.
All my gastroenterologists have been initially reluctant to change my meds at my request. They're guarding against emotional outbursts. If you push, though, and explain your reasons, they usually bend. There have been plenty of times where the doctor has explained his or her rationale to me, and I've backed down. But always try to get the full explanation.
As far as food goes, you can't be afraid to eat. Beware high fiber foods (nuts, raw vegetables, raw fruit, popcorn, etc). Beyond that, you're pretty safe. You always need to be mindful of what you eat, unexpected foods can cause problems, but that's been rare for me.
Keep your eyes open, but try not to worry so much. The extra stress only weighs you down.
griffnJoined Apr 5, 2009
Sat, April 04, 2009 12:00 AM
Reply posted for anflo430.
Hi there, I was put on asacol and prednisone when first diagnosed. Worked for a short minute. Then the dr. stoped the asacol and started me on remicade infusions last june. My colonoscopy in 08 was active crohns from the top of my intestines to my tush. Colonoscopy in 09 was inactive crohns and just a few issues with my rectum. I can't go longer than every 6 weeks for my infusions. But I feel like I'm getting my life back. I was diagnosed 2 years ago at the age of 54. Which is rare....
Ask about remicade infusions. I'm off the prednisone and can't believe I'm in remission. Still tire easily, can't drink more than 3 alcoholic drinks but hey, its good feel human again....
Check with your doctor. Not good to be on steroids for an extended period of time.
good luck!
njgalJoined Jul 26, 2008