New to UC

Hi All!

My name is Meghan and I was diagnosed with UC (in my entire colon) January of 2010. I have been flared up since October. I am a newlywed and full-time graduate student.

I am sick for quite a while every morning, which is an interesting start to the day.

My doc originally put me on Asacol 800 mg /6 per day and it made everything worse. Has anyone else had that reaction to Asacol? Then the doc put me on 20mg of prednisone a day and I have been tapering off for the past month or so. I am down to 5mg a day and everything is getting worse. What do I do? The doc wants to put me back on Asacol, but it made me so sick. He says it is not the asacol, but trust me.. it is!

So, I am currently trying the herbal route. I started aloe vera gel last week and slippery elm yesterday evening. Thoughts?

I have been reading the blog, and it feels great to know I am not alone. Thanks all!

Megs

It sounds like you need to go up on the Prednisone again and really get the bleeding and inflammation calmed down and at the same time start another maintenance Medication

to take over once you are off the Prednisone.

If your Dr does not listen to you that the Asacol is making things worse you have to either find a new Dr or suggest a new medication.

Some people are intolerant to Mesalamines or to certain mesalamines and you may be one of them.

My daughter tried 3 different mesalamines and was intolerant to all of them.

They made her symptoms much worse- it was very obvious.

Good Luck and keep researching. Again, as much as we all hate Prednisone is does help

get the inflammation calmed down and the ability to get on another drup so you hoppefully never have to take it again

     What is your prednisone taper?  When I taper at 10 mgm per week, I start to flare when I reach the 10 mgm level and then have to boost the prednisone back to 40 mgm.  I was tapering 5 mgm per week, got down to 10 mgm on Wednesday and noticed blood and urgency yesterday.  Went up to 12.5 mgm today and see if a slower taper will work.  Another thing, make sure you take extra Calcium with D while on prednisone.  No doctor ever told me this when I was diagnosed back in 98 and I now have full blown osteoporosis. 

Hi Megs...
You haven't tried any probiotics yet? They might help a lot. I just responded in the current probiotic research thread - but my son's GI has several incredible success stories involving probiotics. I've used Ultimate Flora Critical Care and VSL (now the Double Strength one - covered by prescription insurance - ) with great success, and my son is having good success with Align.

Slippery elm has helped me some, too.

I would think at some point, once your whole gut starts to calm down a little again, you might ask about rectal meds - even the steroid ones, if you might be sensitive to mesalamines. Even when my inflammation has been widespead, rectal meds have calmed down the bottom of the system for me and have made me more comfortable.

Yes, the prednisone is a strong med with potentially horrible side effects - but sometimes the inflammation of this is so bad that it's the better option. As long as you can get off it before too long, you'll likely dodge the long-term bad things.

I'll remember your name - I'm Meg, too, although with me it's short for Margaret.

Megs~
I too was diagnosed in January 2010. My doctor had me tapper off the prednisone and as soon as I got down around 10mg the blood started to come back. When I had my follow up he put me back on a higher dose of the prednisone again. I have the same feelings as you...I do not want to be on this drug! I did not have a good feeling with my GI doctor as he did not listen to my concerns at all. That is when I went and got referred to a different GI doctor. My new GI doctor put me on a steroid called Entecort. It only targets the colon instead of the whole body like the prednisone does. I just got off my last dose of prednisone last week so we will see how it goes. Maybe see if your doctor thinks the Entecort would work for you. Still a steroid but a little less evasive to the whole body. And if you are not comfortable with your current doctor than I would suggest you switch. Unless they find a cure you will have your UC for life(hopefully in remission of course) and you want to be able to have a doctor that you feel comfortable with. As for the herbal route. Have you checked into VSL? I have heard some people using it and it works for them. My doctor told me it works for some and not for others.