Begineer Questions about UC

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Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 1/7/2009 6:59 PM (GMT -6)   
Hi All,
 
I mentioned in a recent post that I was just diagnosed over a month ago with UC.  And yes, I hate this disease already but I'm starting to learn that it's going to be with me for the rest of my life!! Soooo, as a newbie to this disease, I do have a few questions and I know most of the questions I have probablly depend on the person and severity of the UC...but I figured I would go ahead and ask anyway??
 
1) How often to flares usually last?
 
2) When you are not flairing, are your stools solid and do you feel normal (not feeling the urge to go every 2 minutes)?
 
3) What are the best meds to take (currently on Asacol which doesnt seem the most effective) other then steroids?
 
4) I'm young, in my mid 20's, can I have a few drinks on the weekend and not worry about a flare?
 
5) Are there any herbal type meds that people are on that seem effective? 
 
6) Is there every going to be a cure for this disease?
 
Thank you all...in all honesty this message board has helped so much thus far.  To hear and listen to people who have the same issues as you is really comforting. 
 
Thanks!

Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 1/7/2009 7:01 PM (GMT -6)   
Sorry all, I spelt "beginner" wrong!!

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/7/2009 7:18 PM (GMT -6)   
Shadam, I'm sorry you've received this diagnosis. Welcome to HealingWell and I hope you will find this site helpful and supportive. To address your questions in order:

1) How often to flares usually last?
This varies from person to person. Some people have easily controlled flares that last a few days to a few weeks. Others have had flares lasting a few years. You can have one or both kinds of flares.

2) When you are not flairing, are your stools solid and do you feel normal (not feeling the urge to go every 2 minutes)?
When you are in remission, your stools should be solid and the urgency goes away - the urgency frequently is the last thing to go, as it is a symptom of rectal inflammation (proctitis) and the rectum is the last part of the colon to clear up.

3) What are the best meds to take (currently on Asacol which doesnt seem the most effective) other then steroids?
Again, this varies with the person. You want to take the lowest level (least side effects) medication that gives you acceptable relief from your symptoms. If you check the UC resource thread at the top of the board, there is information about medication used for UC. Asacol is usually the first medication used; if you're having significant urgency you may want to talk to your doctor about medicated enemas, as they can help heal the rectum and get rid of that.

4) I'm young, in my mid 20's, can I have a few drinks on the weekend and not worry about a flare?
Again, this varies from person to person. I think most of our members do have a drink or two on occasion. If you're in remission it likely won't bother you.

5) Are there any herbal type meds that people are on that seem effective?
None helped me, but again this varies from person to person. If you look around at the forum, I'm sure you'll find a lot of differing opinions. You probably want to avoid anything that talks about a "cure" or guarantees improvement. At this time the only cure is surgery, and because we all react so differently there is no one thing that will help every one of us. Most products that provide such claims are primarily intended to separate you from your money.

6) Is there every going to be a cure for this disease?
I have to believe there will be a cure. At this point they're just beginning to understand the process by which it develops and to identify causes, so a cure may be a long way off. But at least now there's a lot of research being done. Probably because we stopped being intimidated by embarrasment and suffering in silence, also because the incidence of UC is increasing rapidly.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


stephaleph
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/7/2009 9:41 PM (GMT -6)   
First of all, I want to say sorry you got diagnosed. True, this disease SUCKS, but it really isn't that much of a life-changer once you get it under control. Well then again, I suppose that depends on the person and the severity of your UC. I have pretty moderate UC, so I'll answer your questions according to my experiences. FYI, I was diagnosed when I was 15. So I feel your pain.

1) How often to flares usually last?
That's hard to say...again it really depends on YOU and your UC. For me, I probably only get a flare up every other year or so.

2) When you are not flairing, are your stools solid and do you feel normal (not feeling the urge to go every 2 minutes)?
Yes. You feel perfectly normal. Your stools are solid, although you probably WILL excrete more than normal. Meaning you'll probably have one large load once a day or so, and then you'll be fine. But it's not like, painful diarrhea like it is now. it'll be normal.

3) What are the best meds to take (currently on Asacol which doesnt seem the most effective) other then steroids?
As for BEST, again, depends on the severity of your UC. Currently I'm taking Lialda which is the same as Asacol but with a time release so you only have to take two once a day instead of three, three times a day. I also take mercacaptour, which is an immuno-suppressant. Your doctor will probably wane you off of steroids as your flare up calms down. They only give you those if you start bleeding.

4) I'm young, in my mid 20's, can I have a few drinks on the weekend and not worry about a flare?
Well, in MY experiences, I've gotten a little trashed and been okay. Getting drunk to the point where you THROW UP will probably have a bad affect on your colon, so try to avoid that. Just don't have a drink every night, and you'll be okay to party every now and then.

5) Are there any herbal type meds that people are on that seem effective?
I've heard about aloe vera juice. It seriously tastes like swamp monster piss, but if you can stomach it it's supposed to REALLY be a miracle medicine for this disease.

6) Is there every going to be a cure for this disease?
That is do not know. They don't know the cause of UC, though they have made some progress in learning about it.

In the long run, don't let it get to you so much. Just take your meds, take it slow for a while until you learn how your UC affects YOU personally. It's not so bad. It won't kill you and you won't always be a bleeding, vomiting diarrhea-bomb. I know how I felt when I got diagnosed. it's not fun knowing that your body is just naturally ****ed up. Just try not to stress out about it (FYI, stressing out is rumored to contribute to flare-ups) and you'll live a perfectly normal life. Good luck!
 
 
Steph, I'm sorry I had to edit your post.
 
1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use, including medical marijuana use, threats of suicide or self-injury, or threatened or intended physical harm).  Discussions of suicide or self-harm that are deemed negative and therefore potentially injurious to others are also not permitted.

Post Edited By Moderator (Judilyn) : 1/7/2009 8:23:05 PM (GMT-7)


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 1/7/2009 10:04 PM (GMT -6)   
Here are my experiences, hope it helps!

1) How often to flares usually last? I have had UC for 2 years now. I get a flare every 3-4 months for a few weeks. I'm learning to recognize the early symptoms better and hopefully cut it off to be shorter.

2) When you are not flairing, are your stools solid and do you feel normal (not feeling the urge to go every 2 minutes)? Once every morning and all is well

3) What are the best meds to take (currently on Asacol which doesnt seem the most effective) other then steroids? Just Asacol for me, Steroids when I flare. 40 mg then taper.

4) I'm young, in my mid 20's, can I have a few drinks on the weekend and not worry about a flare? Doesn't seem to bother me. I'm 33 and still enjoy my drinks once in a while.

5) Are there any herbal type meds that people are on that seem effective? Haven't tried any.

6) Is there every going to be a cure for this disease? I do the little I can. I realize some want to be private about their diagnosis but I started participating in the annual walk for the CCFA. http://online.ccfa.org/site/PageServer?pagename=TS_homepage


Good luck!
33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
 
1600 mg Asacol a day
Ferrex
Pre-Natal Vitamins
Lovenox
On and off Prednisone, 40 mg then taper
 


UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 1/7/2009 10:47 PM (GMT -6)   
Excellent questions. I had those exact questions a few weeks ago.

Glad to see during remission that normal stools, a few drinks every once in a while and some sense of normality is possible for some here.

I am new to it and being weaned off the Prednisone now but still have Tenesmus most of the day but I am trying out different foods to see if diet is causing that.

Again, excellent questions.
Male, 30
Dx: moderate-severe UC 12/08, Lifelong GI issues including an intesusception at age 4
Current meds: Prednisone (20mg), Lialda, Prevacid 

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