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So I just came off of Prednisone

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Ulcerative Colitis
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Posted 3/18/2009 10:27 PM (GMT 0)
I'm pretty new to the disease as I have been officially diagnosed for less than a month but I've had symptoms quite a while. First thing after my first(and only) scope so far my GI put me on prednisone. I was on that for two weeks and I was starting to feel pretty good and almost back to my old self. I started at 40mg for a week and then tapered off slowly down to ten before being taken off completely last sunday. Anyway since I have had no prednisone in my system the last few days I've noticed a few of my old symptoms have come back a little. I'm having blood in my BMs and a little bit of inflammation occasionally. Before Prednisone I was having watery/bloody 15-20+ BMs a day and I wasn't eating correctly or anything like that. Since my diagnosis I changed my diet around and have been on 500mg of Azulfidine 2x a day and was on prednisone until a few days ago. Now I'm having around 3-4 BMs a day and its fairly formed it just contains blood and mucus.

Does anyone have any advice as to what my next move should be to try and achieve remission?
Posted 3/18/2009 10:35 PM (GMT 0)
I'd call your doctor and get another appointment. Also, read up as much as you can about the different types of medication you can try. www.ccfa.org has basic info and is a great place to start.

Have you used any rectal meds? Flares generally start in the rectum and move upward, so are often helpful in not only achieving remission but also maintaining it. It might turn out that you have to use pred again to get in remission, but the rectal meds should help you achieve remission more quickly and maintain it.
Posted 3/18/2009 10:40 PM (GMT 0)
I think it may take a little while to readjust after coming off pred. I got off pred about month ago and some symptoms came back. I didn't have blood or mucus, but I did have very watery stool. I think the key is that you continue to improve overtime. If you continue getting worse overtime I would call your GI. My GI met with me every week until I had been off pred for a while. This has been my first flair, so I don't know a whole lot, but I am a little bit ahead of you time wise.
Posted 3/18/2009 10:49 PM (GMT 0)
I appreciate all the advice. My doc said that rectal wouldn't work as great on me because my colitis seems to go pretty far up my left side which is why I was on prednisone to start with.
Posted 3/18/2009 11:13 PM (GMT 0)
I have pancolits, which means my inflammation is throughout my ENTIRE colon. I was also in a pretty severe flare (20 BMs a day) and the combination of Asacol (oral mesalamine) and Rowasa (enema mesalamine) almost had me in remission until I got a tummy bug from my son, which made the flare worse again. My doctor then decided to put me on prednisone because I had been in a flare for long enough it was time to move to prednisone to prevent further damage to my colon.

I'm sorry, but your doctor is wrong in stating that the enemas won't work great on you (assuming you can tolerate them...some can't). They helped me tremendously. The topical mesalamine (enemas and suppositories) are much more effective than oral mesalamine like Asacol. Yes, they won't reach all the parts of your colon, but they will heal the parts that it can reach.
Posted 3/19/2009 1:11 AM (GMT 0)
Hey there,
I was in a similar position to you when I was first diagnosed a year ago. I started on 40 mg of prednisone (along with a million other meds) and tapered by 5 mg each week. Well when I got down to 10mg, I started noticing the symptoms coming back. My GI informed me to go back up to 40mg and try again. So that I did and that time i came down 5mg every two weeks. Well when I got down to 15mg, things weren't getting any better and a scope revealed that my colon was still pretty badly inflamed... so guess what? Back up to 30mg again. I stayed at 30mg for 3 months and just this past week my GI allowed me to come down to 25mg as I have started Remicade. I hope your battle doesnt consist of a rollercoaster prednisone ride like mine... but to answer your question maybe you jsut need to go back up on pred again and try tapering a little slower which will allow your colon more time to heal. Also.. diet is extremely improtant.. soo try altering what you eat and see what works for you. I would talk to you GI about the next course of action though! good luck!
Posted 3/19/2009 2:00 PM (GMT 0)
Seeing from your post and your sig that you're open to dietary changes, supplements and probiotics, I'd highly recommend you check out Jini Patel Thompson's book Listen to Your Gut as a great source of information on alternative, supportive therapies that can help you reduce or eliminate your need for meds.
Posted 3/19/2009 3:59 PM (GMT 0)

ozziek - why you state that diet is so important.  I don't think unless you are allergic to gluten or lactose or ? that it really makes any difference what you eat.  I only eat low roughage so it don't hurt going through my colon.  I am interested to know why you believe it makes a difference.

ElaineNY

Posted 3/19/2009 4:15 PM (GMT 0)
I too have left sided colitis that goes through my mid transverse colon (which is pretty high up). My Dr. didn't think I needed Rowasa either. I insisted on it and guess what...my blood and mucous went TOTALLY away after I started it. It seems as if my Colazal wasn't making it that far down. Ask your Dr. for samples. Mine gave them to me and when I told him what happened, he gave me a Rx. This was my "first" confirmed flare and I took Pred. and tapered over 2 months. Maybe you will have to do that too.
Posted 3/19/2009 6:38 PM (GMT 0)
My daughter's doc put her on 6mp, so that she could taper the pred. At each reduced pred. dose, a 'lil flare occurred, so we knew it was unlikely she could get off with no back-up plan. The 6mp take a long time to kick in-even the test results to get cleared for it take near 2 weeks. This drug has worked for many, and should be considered. I also agree that the rectal meds will work, no matter how far up the left side your inflammation is. The Cortafoam worked better than Rowasa for us, but this is a trial and error disease. No foods really count, except for allergies or tough to digest products The other supplements are also worth a whirl, but be careful not to load up on too many. Risks with all. Keep reading.
Good luck
Posted 3/19/2009 6:42 PM (GMT 0)

Hmmm?  I did not have any tests to see if I could take 6MP as far as I know.  Of course, I am 68 and maybe there was a test along the way I forgot.Doctor just put me on it - said to take it while tapering and hopefully when I get down to flaring level of prednisone it will kick in - hoping.  I did have a blood test after taking it for 3 weeks and now will have a test every month he said.

ElaineNY

Posted 3/20/2009 1:56 AM (GMT 0)
kops2da,

I find that it really does make a difference in what I eat ...for me anyways. I have been in an active flare now for a year and I have found that different foods are more bothersome for me then others. Of course everyone is different and if you can tolerate all foods than props to you! I am not allergic to gluten or lactose.. but I find that diet plays a huge role in how I feel, the pain I have and the number of bathroom trips I make. I was suggesting to make diet changes to poorcollegestudent as they are loooking for alternate ways to achieve remission and i think this would be worth giving a shot. So to answer your question, from my experience...diet has been an important factor in reagards to how I feel day-to-day and hour-to-hour. Hope this answers your question.

Posted 3/20/2009 2:01 AM (GMT 0)

Of course food makes a difference in how you feel.  Since I am 68 and only diagnosed a year ago with UC - I have had lots of years of experience with food LOL!

I am overweight and love my carbs.  BUT, I feel so much better when I eat properly - nutritionally and in small meals.  I have a hiatel hernia and GERD so of course food affects my every day life.  However, having said that I don't believe food has anything to do with causing or making UC better or worse.  Just my opinion!

No harm in trying different foods, however, just remember the nutritional values and keeping a journal can help you to not keep eating what makes you feel uncomfortable or sick!

ElaineNY

Posted 3/20/2009 3:30 AM (GMT 0)
Well I am glad you agree that eating different foods does make a difference. I never said anywhere that certain foods CAUSE UC though...just to make that clear! haha I just said that by learning what foods I can tolerate and which ones bother me has really helped me. And with that said, by sticking to the foods that I can tolerate well I would definitly say that it has made coping with my UC much better.
Posted 3/20/2009 2:12 PM (GMT 0)

ozziek (love your name),

I am aware YOU did not say food was a cause but many who come here seem to think they ate things to CAUSE their disease.  I am a senior, newly diagnosed but now my doctor thinks I probably had UC with IBS, GERD, etc. for many more years - going back maybe 15 years (that is when I had a sigmoid and nothing was found).  I do believe in many cases some are allergic to wheat, lactose, etc. and don't know it.  My weakness is sugar and I read here I am probably "feeding" bad bacteria and could help by cutting back more - more than I have. 

In so many ways we are different - reading here many enjoy salmon and say it helps.  I love it but last two times I ate it I got very sick - now thinking maybe it had MSG and that could be my problem.  We all have to find our way. 

I see you are a university student in Canada.  Good luck in all your studies. I am so admiring all you young people who have to deal with this disease now and forever - then again maybe you guys will benefit from a cure in the near future - wouldn't that be wonderful!  My son is a research scientist and is working on a cure for Alzheimer and MS - it is such a slow process but many of these diseases will be cured in your lifetime!

ElaineNY

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