Diagnosed with UC on Tuesday. Have some questions

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

gilbernick
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 1/19/2008 10:38 AM (GMT -7)   
Glad to see this forum.
 
I had some blood in my stool about 1.5 months ago.  It progressively got worse and worse until no poop was coming out, only blood.  A little concerning to say the least.  I had the colonoscopy on Tuesday and was diagnosed with UC.  Wed morning they started me on 40 mg of Prednisone and an antibiotic. 
 
What has been your experience(s) with how long this steriod takes effect?  I started Wed morning and Thursday night and all day Friday I was on the toilet every 1-2 hrs.  This is the worst its ever been.  The urge to go comes on very fast and very urgent.  Then after I get done, it feels like I have to go again right away.  Blood is still present.  I've been eating a low fiber diet, in reality I've been hardly eating nothing much at all to try and give time for healing.  I'm concerned that this is not getting any better.  It's only been 4 days now of the steriod, but it seems to be a fairly decent size dose.
 
Also, are you guys continually on some type of steriod or med, or when the flare ups go away, is it more of a diet restriction?  I don't like the idea of being dependant on some type of med for life.
 
Thanks for listening.

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/19/2008 10:49 AM (GMT -7)   
Hey. Welcome to the forum. sorry you have to join us, but the people here are really great.

Ok, to answer some of your questions.... first, steroids. yes, 40mg is a decently high dose, and most people do respond to pred within a week (and, in many cases, much sooner, as in 48 hours). But, some people need to start on a higher dose of pred, 60 mg. Both 40 mg and 60 mg are typical starting doses of prednisone, depending on the severity of your disease. If you don't respond to the pred within a week, I would definitely call your GI.

Diet - some people end up with UC that seems to be effected by diet, and those people do eat a more strict diet. Others end up with UC that really seems completely unrelated to food, and those people tend to eat whatever they want (as long as they're feeling ok). the role of diet in UC is something that people talk about a lot on this forum, as there is no concensus, unfortunately.

as for long-term meds, yes, most of us are on long-term meds, or, at least, when you're first diagnosed, most people end up on meds for at least a few years, and if you stay in remission that whole time, you could then maybe get off your meds. that is something you would decide with your GI. But, in general, most people stay on meds indefinitely.

one of the frustrations of this disease is that every single individual responds differently, so you will have to figure out, via trial and error, what works for you. It is important to educate yourself and know your options, and it is also definitely useful to seek advice and experiences from others on the forum. but, ultimately, it is a very individual experience, so what works for some people may not work for others.

I hope this helps. others will definitely have more to say. oh, but lastly, I want to emphasize that thought most of us are on drugs long-term, prednisone, and steroids in general, is not a drug that should be used for long-term. it has a lot of nasty side effcts, and it eventually stops working anyway. there is definitely a time for it - and it sounds like you are there right now - but it is something to be used sparingly. and do NOT get off it without a taper schedule from your GI.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/19/2008 11:04 AM (GMT -7)   
Gilbernick, I'm sorry you needed to find us, but glad you're here. Welcome to HealingWell. You'll find a lot of good information in the resource sections here, as well as from the members.

Your introduction to UC sounds classic to me. There are several classes of medications used for UC. Steroids are used to try to achieve fast relief. For me they always began to show improvement within a couple of days, but for some people they will take longer.

Another category of drugs are called 5-ASA's (Asacol, Colazal, Pentasa.) These are the mainstay of treatment for most of us. Many people will achieve remission with only one of these. Generally doctors recommend that we continue to take them even when we are in remission.

For many of us, rectal medications taken in the form of enemas or suppositories are a key weapon against UC. Because the oral medications may not reach the rectum in sufficient concentration to be effective, applying the medication directly can be very helpful.

Steroids are recommended for short-term use to bring a flare under control. Most docs don't like to use them for longer-term therapy because they have some pretty serious side effects when used for long periods.

Immunosuppressants such as Imuran (Azathioprine) and 6-MP may be used when the 5-ASA alone doesn't produce adequate results.

Biological medications are one of the newer weapons against UC that just doesn't want to quiet down. These are drugs like Remicade, Humira, Orencia and others. Some are already approved in the US for UC, while others are in the testing phase. And there is a tremendous amount of research being done into new therapies.

Also, many people on the forum use non-prescription helpers such as probiotics, slippery elm, turmeric, etc. or special diets. What works for one may or may not work for the other.

One frustrating thing about UC is that everyone is different, different approaches to treatment work for us and sometimes it takes a while to find what works for you. Another frustrating thing is that because it's naturally a condition with remissions and flares, it can be hard in the short term to really know what worked.

Your feeling of constantly needing to go is called tenesmus. It's caused by the inflammation in your rectum and is very common during a bad flare. Some people find relief from sitting in a tub of warm water, others from ice packs. Others use ointments with anesthetic qualities. It's very unpleasant, but it will go away when you're in remission.

Some information to ask for from your doctor: where is the UC located in your colon. For some of us it's proctosigmoiditis (just the lower end of the colon and the rectum). Others have involvement in their entire colon. Also ask the severity of the inflammation. It isn't a bad idea to ask for a copy of the report from the c-scope for your own records.

We all know what a scary time this is for you because we've all been there. It helps to educate yourself about your condition so you can be a partner in your own treatment. Also, we're all here to provide information based on our own experiences and support during the bad times.
Judy
 UC Forum Moderator
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 1/19/2008 11:18 AM (GMT -7)   
Welcome to the forum. Hope you will be able to find answers here. The support here is phenomenal. I'm wondering if the antibiotics are causing you to feel worse. I've read that can be a side effect. Why are you on antibiotics? Are you taking a good probiotic, as well? I'm only speaking for me, but there was light at the end of the tunnel. I had UC for 8 years, on and off meds, depending if I was in remission. You asked about diet, well, I believe it can make a difference for some people. I realized, only by trial and error/experimenting, that my UC symptoms had a fungal etiology, maybe from living in a few blantantly moldy houses, taking birth control pills, using antibiotics, eating a lot of grains which are contaminated with mycotoxins over the years... dunno. Changing my lifestyle to a somewhat antifungal diet...reduced sugar, grains, yeast (actually none at all when I started until I got better) still makes all the difference for me. Some people say they aren't affected by food, either way. You will not know for sure which category you fall into unless you are willing to experiment yourself. There are no tests, as far as I know. I was like you, I didn't want to be on drugs the rest of my life, and they only worked so long, and then I had to find something different, with more side effects. I am not against drugs. They helped me get through a lot of bad times. If I hadn't tried an antifungal program, I would still be on them. No one was more surprised than me when I started getting better just by changing my diet, let me tell you. There are options out there. If some sound worthy to you to try, do so. No one can tell you how your body will react, with the drugs or diet. Good luck. I'm sure you will hear a lot of valuable advice and experience here on this forum.

gilbernick
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 1/19/2008 11:51 AM (GMT -7)   
Thank you for the replys.  I'm checking in with the doctor on Tuesday.  Only thing I know right now is that my entire large instine was very inflamed but nothing in the small instistine.  The antibiotic was a precaution against infection.  Funny thing is that my general doc first diagnosed it as a anal fissure.  I wish I would have seen a GI doctor before I did and maybe this flare wouldn't be so bad.
 
Thanks again for all the help.  The breakdown of the meds/treatments were exactly what I was looking for.  I realized w/in the first 10 minutes of researching this disease there was no specific cure (except surgery) or med that would help everyone.  That's when the "oh sh@#, this is really serious" thought came rushing into my head.  Knew I was in it for the long haul.
 
 

maud
Regular Member


Date Joined Jan 2008
Total Posts : 90
   Posted 1/19/2008 10:43 PM (GMT -7)   
all i can add my friend, is that it all will be ok, dont panic and take one day at a time, only on meds for 4 days is far too soon to be exspected to be ok , give the meds 2 weeks hunny x
and welcome

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/20/2008 10:24 AM (GMT -7)   
gilbernick - The first two general doctors I saw diagnosed me as having just an anal fissure, even though I was having horrible stomach cramps. One of the doctors said it was "just the stomach flu" and an anal fissure. I wish I could have seen a GI sooner too.

Hang in there.
23 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D); fish oil


blessteve
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 1/20/2008 10:45 AM (GMT -7)   
Welcome aboard sorry you have to be here.
As you can see there are great people here with a wealth of info.
Diagnosed panColitis 1990.
Current Meds Asacol x4 twice a day.
Pred for flares. I still have my colon THANK YOU GOD!!!
vitamins-veggie juice-wheat grass juice--fish oil
Started 1/01/08
Freindly bacteria:raw milk-kefir made with raw milk--natto--probiotics
Antifungus:Caprylicacid, Pau D Arco, Black walnut hull, Oregano oil
grape seed extract.
Anti inflammatory:fish oil  1/15/08 started Turmeric
1/10/08 Started healthy diet again.
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 14, 2017 1:59 PM (GMT -7)
There are a total of 2,905,471 posts in 318,864 threads.
View Active Threads


Who's Online
This forum has 158220 registered members. Please welcome our newest member, Pj585.
414 Guest(s), 15 Registered Member(s) are currently online.  Details
Michelejc, PeppermintTea, tickbite666, Aset28, Charlie55, Samura, NiceCupOfTea, Lynnwood, Hardlyrob, edgaroo, SharonZ, AZ Guy, Szabo246, straydog, JkorourkeRN for husband