Newly diagnosed - need your help

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just_diagnosed
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/6/2009 6:51 PM (GMT -6)   
Hi everyone,
i was havign a lot of rectal bleeding - but just 2-3 bowel movements a day. So finally had a flexible sigmoidoscopy. It showed ulcerative colitis all the way till the scope would go :( Biopsy results not back yet..but dcotor was quite sure. I am very worried about the diagnosis..especially since I have a history of colon cancer (father had it at 65 :() I am just 28 - and wanted to try and have a baby soon..but that will have to wait for a bit I guess. Currently I am on 40 md pred to taper in a month and Asacol.
Sicne I am absolutely new to the disease - can you guys help answer some questiosn for me please? Would really appreciate it..
 
1. How often do people flare commonly...once a year? Is it possible to be in logn term remission with Asacol maintenance..by long term I kind of hope never flare again?
2. I am already feeling better after just two predinosone doses i think..did my GI give me too much? 40 mg seems a little high to me. Also not prescribed any suppository..
3. Is the predinosone taper alwyas risky and causing flares?
4. Most important question - all the websites I am seeing seem to indicate that colon cancer is a very real risk after 10-12 years of having the disease. Is this true even if most of the time you are in remission? I know my family history compicates this a bit..but still worried about how much of a risk this is..
 
Would really appreciate your responses...am really freaking out..I wish it was some other organ of my body..not my colon..which I already have history for :(
 

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 8/6/2009 7:18 PM (GMT -6)   
Hi there. Hope you're better soon...and don't get too stressed out about it. Getting diagnosed with UC can be a lot to take in at first but once you work out the right treatment options things get a lot easier to deal with.

I'll answer your questions:

1. How often do people flare commonly...once a year? Is it possible to be in logn term remission with Asacol maintenance..by long term I kind of hope never flare again?

UC is unpredictable so I'm not sure you'll get a standard answer on how often people flare. Someone might just have one flare and that could last for months, or have a few flares a year that are only for a couple of weeks. Also, a lot of people get in remission and stay in remission for years, and you probably won't find them on this forum as they don't have the need to be here.

2. I am already feeling better after just two prednisone doses i think..did my GI give me too much? 40 mg seems a little high to me. Also not prescribed any suppository..

Prednisone works very fast. Often within a day or so of starting on it. 40mg is a common starting dose, but just wondering from what you wrote, are you on 40mg for one entire month and only then supposed to start tapering down? You might want to re-check that taper with your doctor as it seems like a long time to be at 40mg before tapering.

3. Is the predinosone taper alwyas risky and causing flares?

No tapering doesn't always cause flares. It's risky in the sense that you don't want to get off it too quickly as that can be a jolt to the system.

4. Most important question - all the websites I am seeing seem to indicate that colon cancer is a very real risk after 10-12 years of having the disease. Is this true even if most of the time you are in remission?

After 10 years of having this, there is a slightly higher risk of having UC, but I think if you're in remission during this time then the odds of getting colon cancer are lower. Whatever it is, I wouldn't worry about that right now. Just focus on getting better.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally

Post Edited (Rio in Maryland) : 8/6/2009 7:24:04 PM (GMT-6)


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/6/2009 7:42 PM (GMT -6)   
As for the baby thing, try not to fret too much. Many people with this have kids. =)
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 8/10/2009 12:49 AM (GMT -6)   
We are fairly new to UC also. My daughter was diagnosed in Dec 2008 after a colonoscopy. She was given 20 mg of Pred and felt better after the first pill (she was 10 at the time and weighed 70 lbs) From what I have heard, 40 mg is a normal dose. There is no way to predict flares. However, the 2 that my daughter has had were when she was fighting a sinus infection so her immune system was compromised. She takes Asacol and during the flare added Rowasa and that pretty much takes care of the flare. As for the colon cancer part, I can't even go there. We need to get through the next 3 years of puberty first. I won't let myself even think about what could happen 10+ yrs down the line.
Be careful with tapering off of Pred and do it over a period of weeks. You never know about pregnancy - it could put you into remission and have a UC free pregnancy :) I hope that is the care for you. Good luck
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
2nd opinion March 2009 - diagnosis UC and not Crohn's
 
currently on 2400 mg Asacol & Rowasa 1x day


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 8/10/2009 6:55 AM (GMT -6)   
There are lots of women here who are pregnant, had children with UC, and are just fine.

I have flared a few times since getting UC in 2006. Of course, the initial sign of it was a long flare, blahhh, and that lasted for a long time. Nearly a year. I took Entocort to control that, which hardly took any time, and I was back to normal. However, no one had told me about tapering the steroids so I took one less pill a week - 3 week taper - too fast. I got another flare.

After the first two, I've had a ton of minor ones which is when I realized I can't eat anything BBQ, quite a few fruits, and a lot of sugary things.

You'll get in the groove of things pretty quick after you realize how your body reacts.

There is hope, because I'm doing a lot better. I was near death for a bit with the anemia last year. Thank God I pulled out of that. Don't wait to get things checked out because you're afraid. Just go to the doc if you think something might be wrong.
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
2 Lialda/day.
Vitamins - Caltrate+D, iron, A, B12,
Flintstone Complete+iron, and aloe vera pills/juice.
At least I'm off the Entocort. =]

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