soo....just beginning life with UC...not sure what to expect

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LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/11/2008 4:14 PM (GMT -6)   
Hello All,
 
My name is Chuck and I live up here in the cold (at least today) country of Canada. I'm 28 yrs old and I have just been diagnosed with Ulcerative Colitis. Not the best news I've ever had, but I'm doing my best to stay positive.
 
I have been prescribed a drug to keep the symptoms under control (I'll have to double check the name), and prednisone to help out right away.
I am really a bit unsure of the prednisone, but have been told it's the best way to get the symptoms under control quickly and then can wean off.
 
My questions are  ( for now :-) )
Has anyone had any experience with prednisone? Is it as bad as people say. I am really scared of the side effects.
 
and..
 
I am curious how you all cope. I am generally a healthy person, love outdoors and play sports such as hockey, biking, tennis, etc. Will I be able to keep this under control and live a pretty normal life? I've heard some horror stories.

I don't know where to start.......

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 12/11/2008 10:27 PM (GMT 0)   
Welcome and I'm sorry about your diagnosis!! It's really just trial and error with this lovely disease. Some people do great with the meds. and live a normal life, others struggle for months, and sometimes years to obtain remission. Prednisone is such a double edged sword, it's like a miracle drug for most that can give you your life back but at the same time can cause some side effects. I've been on it 3 times and all of my side effects have been reversible, except for some bone loss which I'm treating with Fosamax (I don't even notice the bone loss so it's not like it's hurting me at the moment!!). Try and research as much as you can and remember to be your own advocate with your doctor.

I'm not able to lead the life that I used to but there are many things that it doesn't hold me back from doing. I try not to let it get me down and I try to do as much as I can to lead a normal life. Best of luck to you and remember that we're all in the same boat and are always here to help!!
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/11/2008 6:54 PM (GMT -6)   

I'm sorry to hear of the troubles you have gone through as well glamourgirl. I am hoping to keep this in check and remain as normal as possible.

I know the last 5 months pre-diagnosis have been tough....lost some weight, diahrea etc.

I am pretty nervous to start prednisone I will admit. I am hoping it's a one-time deal and I can keep it under control afterwards. *fingers crossed*.

I know it sounds stupid, but I think I am so nervous about how this will affect my life because I have been so healthy and active my whole life, then bam...I have this and everything changes. I just want to be as healthy and close to that as I can possibly be. I have been a somewhat anxious person my whole life I guess, but kind of kept it hidden. (I am a guy of course).  But really the only thing that makes me extremly nervous is my health. You guys might hear alot from me as I try to cope and get used to this new way of life. Sorry ....

Well...off to plan when I start my first cycle of pills. Today I had to take no pills, tomorrow I take 17...wow. My new life begins.

I have hockey this weekend. I hope I'm ok to play...

Anyone who has any more advice for me, I'm all ears!!!! :-)


Happychic
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/11/2008 8:50 PM (GMT -6)   

Hello Pushingforward,

I have been reading this forum for the last couple of days and decided to join when I read your first post.  I am 37 and was diagnosed with UC in 2005.  I have had just a couple of flares in the last 3 years, which makes me feel quite lucky after reading some of the horror stories.  After trying Colasol and being on Prednisone twice, the Colasol stopped working for me. I also tried Pentasa for a while, but that didn't last.  I am currently just taking lialda(2)  and a multivitamin each day.  I actually feel really good and go about my life as usual, though I spent many days without leaving the house when I would have a flare.  I guess I just wanted to let you know that this is a trial and error disease.  You have to find what works for you (with your dcs help) and pray that it continues to work for you.  When I first started on the Prednisone I felt AWESOME!  I guess I didn't realize just how bad I had been feeling until I felt better.  After a couple of weeks that honeymoon was over and I was ready to taper off. I had no real side effects, but that might be because I wasn't on it very long. Anyway I wish you the best of luck and hope that you stay positive about things, in my opinion that is a major part of the battle!


MollyMonster
New Member


Date Joined Sep 2008
Total Posts : 9
   Posted 12/11/2008 10:02 PM (GMT -6)   
Hey Pushing Forward,

Like the others, I'm very sorry about what you're going through. Here is what I know...

While I rarely post, I've lurked here for a couple years. It's one of the best resources you could possibly have, both for answering questions and for the sheer power of knowing there are others out there that understand. For me, that's very comforting. With that said, when I'm in remission I rarely visit here...I live my life like every other person! Sure, there may be some foods I have to watch out for, and I've had to take a couple pills (Pred, Imuran, etc) every day, and now I'm on Remi every eight weeks...but by and large, it's all good. So just remember that (for me, at least) UC has ebs and flows...you just gotta find a doctor you trust and go along for the ride. Sometimes I can get too wrapped up on reading all the not-so-fun stuff on this board, and I need to take a step back and remember that people don't usually come back to post all of the "read about the really cool thing I did today because I felt great!" stuff. turn

To address your Prednisone question, I've been on it 5 times over the last few years. The first 4 times, I had no complaints...gained a bit of weight, but if I focused on making healthy choices to fill the cravings then I could even avoid that. I typically started at 40 mg and tapered off at 5 mg a week, then 2.5 mg from 10 to nothing. However, this last time...honestly, it was awful. I started at 60 mg and just couldn't get well enough to taper, so I was on it long enough to truly experience side effects others on here have talked about. It sucked. :-) That's when I went on Remi, and fingers, crossed, it's helping.

I don't really have any good advice, except...remember you're not alone. (in a good way, not a creepy-you're-being-followed kinda way!) smilewinkgrin

P.S. I just reread your post, and I want to hammer a couple points in. When I was first diagnosed, like many others, I thought my life was OVER. Five years later, I can tell you it's not...it's just different. I'm still a very active, athletic 20-something, which my doctor encourages. He usually gently makes fun of me for doing too much. And honestly, sometimes I do overdo it. I'm pretty sure I've set off my own flares at times by stressing too much about school, my job, whatever. So I have learned to let some things go, and to listen to my body more. I think I've matured a little more than I otherwise might have at this age. I take more precautions when I travel, but I still travel several times a year, including overseas. You just have to plan more and be flexible. Also, I've become much more sympathetic towards others. And I usually eat a bit healthier than I did. All in all, I'm certainly not glad about this whatsoever, and I'm not trying to sugarcoat things...sometimes it's lonely, sometimes (like yesterday after a treatment) I have my "why me??!?" pity party days, sometimes it's just obnoxious....but your life is FAR from over. It is what you make it. :-)

Sorry that was so long...the tone of your post touched home and I hope at least some of it helps.

Post Edited (MollyMonster) : 12/11/2008 9:19:38 PM (GMT-7)


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 12/11/2008 11:08 PM (GMT -6)   
Just wanted to add my two cents worth. I have have UC since I was 8 and am now 35. In those years I have danced with two ballet companies professionally and have been very active in many other sports. (Biking and jogging). Some days are harder than others but as long as the people around you know, you will find them very accepting of your "off" days. The two things I have learned the most over the years is to take care of yourself first and that it's ok to have a day of rest.
As everyone else has mentioned, this is a disease of trial and error and you need to find what works best for you. Keeping a daily food journal as well as writing little notes about stress level that particular day have been very helpful in the past. If you have any other questions this is definitely the place to be. The people here are knowledgeble and extremely friendly. Good luck in your endeavours.
 


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/11/2008 11:27 PM (GMT -6)   
I'm sorry that you've been diagnosed with UC, its awful. I wasn't terribly upset upon hearing my diagnosis...probably because I had no idea what it was or how it would affect me, I was just relieved it wasn't cancer. I've really found that, over the course of the last year, writing in a diary (dorky, I know) has helped tremendously. Just keeping track of meds and reactions, foods, flares...anything I could think of pertaining to my UC has helped me to cope. Probably won't work that way for everyone, but just a suggestion. As for prednisone, I think it affects everyone differently. My step-mom said it made her euphoric whereas it made me a crazy person! I've been on it pretty consistently for a little over a year, with a few weeks break here and there, and I can say that it doesn't affect my mood as much anymore as it did the very first time I took it. Of course I can always expect the moon face, increased appetite, and insomnia. The best advice I got before starting prednisone was to stay active, no matter how little it was...even just a walk around the block was better than nothing at all and I've remembered that and it truly did help me, atleast to blow off some steam and anxiety. Anyways, I hope this has been helpful and I hope that prednisone works for you and that you'll be able to maintain your active lifestyle as best as possible...! Stay positive! =]

LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/12/2008 7:49 AM (GMT -6)   
Thanks everyone for their responses. It really helps to know other people are going through this as well, although I wish it on no one.
I am really hoping that these pills (Pentasa) work for me. I know it's trial and error. I just don't want to start the prednisone again if they don't. I'm afraid of that as much as the disease I think. Hopefully my side effects are minimal.
 
I loved hearing about how everyone is still active, it makes me feel that I can keep up with my life.
I have a ski trip planned in 2 months. Will prednisone make my chances of breaking a bone more? I don't want to miss it, but I also don't want to be in a cast on top of this...
 
I saw the pictures of my colon yesterday too by the way...... shocked
Could have done without that....I'll just take his word for it next time.
 
I'll check in soon...gotta get back to work... :-)
 
 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day


Happychic
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/12/2008 8:40 AM (GMT -6)   
In my experience the pred made me feel wonderful, like new person! My energy had gone so far down from the flare that I felt good after the first couple of doses. I think that the bone loss comes with extended use of Pred. The thing that bothered me the most was the increased appetite. I had been eating so little because of the flare, then the pred made me feel better and I could eat again. I had to be really careful to not overeat because I was always hungry. Of course everyone reacts differently. I stepped up my exercise to counteract the eating!:)

theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 12/12/2008 2:45 PM (GMT -6)   
I always tell people who have just been diagnosed that they have reason to redecorate their bathrooms and maybe instal a new commercial toilet for those bad flares. All joking aside, I was diagnosed at 22, it is a hit to the male ego for sure. But in hindsight it made me a stronger minded person and you learn to cope. It is bizzare at first and it wont hit you till the end of year 1 that you really are fine. The begining is rough and the nights you will spend sitting on the toilet wanting to just sleep are pretty grueling. But, you will survive, it just is another way of surviving you may not be used to. First things first get probiotics and Rowasa. It is a real gamechanger for me and many others.
Jeff, 24, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Update 3/25/08: Entire Colon UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Probiotics by Ethical Nutrients- Intestinal Care (Started Recently During a Long Flare Seems To be Working Wonders) 2x day
Slow Fe (Iron supplement)- 1x day
Lexipro- 2x Day 10Mg


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/12/2008 2:55 PM (GMT -6)   

That's funny klep. I have thought about putting a tv in my bathroom. Might not miss so much of the game.

I noticed on your other posts you work out still at the gym. I play hockey and am dying to get back to the gym. It's a good sign to see you can still maintain that.

I start prednisone tomorrow morning and I hope its a one time shot and then I can get this into remmision.

What is Rowasa you are talking about.

What pro-biotics does everyone use? Anything else helpful you guys do to cope or help keep symtoms down.

Another thing I was going to ask is...after I get this under control...what exactly is a flare-up. Is is a couple bad weeks? Or back to square one with prednisone etc....Learning all this as I go along...

Cheers to you all.


 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


Happychic
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/12/2008 3:01 PM (GMT -6)   
Usualy Pred is only prescribed for a bad flare. My GI usually has me ride it out or change meds. My flares usually last 1-2 weeks. Pred is to calm things down and then your other meds are to maintain that calm. I guess a lot depends on how bad your flare is. Also, I suggest that you contact your GI as soon as your flare begins. Never let it get too far, or it can get worse and then you are back to takin Pred. Doesn't this all sound like fun? You had nothing better to do , right?:))

LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/12/2008 3:29 PM (GMT -6)   

haha happychic,

How'd you know I had nothing better to do...this makes my life so full and complete :-)

You know..it's funny that this is not caused by stress....but get this....here's my last year in a re-cap:

May 2007 - new house, healthy as can be, playing sports, new puppy...happy.

Oct 2007 - start having problems with my car...put over $1000 into it...no luck

Nov 2007, my car I still owe $5000 for just dies...out of nowhere. I have to buy a new car, pay for that and still pay off the old car...that is dead as a doornail. It was a 2001, so should have had many years left.

Jan 2008, my dog gets into my neighbours parking lot, drinks antifreeze, rushed to emerge..on IV for 2 days...$500 later

May 2008 - Giant tree falls in my yard...through my neighbours yard ... my cost $2000 after cleanup and removal of the rest of the tree, plus fixup.

June 2008 - notice leak around chimney. Fixed it myself, had it fixed professionally 3 times not...still leaking to date - $300

July 2008 - Someone runs a red light. Smashes my car, thankfully insurance covered that and the rental...for the month it took to fix.

Coinidentally, maybe that was the last straw- July 2008, $9800.00 later with nothing to show... I go to fart...it's water.....you get the rest....hence I'm here.

I'm can be anxious, but I'm a pretty easy going guy. I remained pretty down to earth through all of that, but possibly it caught up to me without me knowing it. Anyways...who knows...it's a done deal now.

I love that everyone here helps out all the time. Don't think the questions end here hahaha...

Talk to you all soon. :-)


 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 12/12/2008 3:41 PM (GMT -6)   
     I've had UC for over ten years now.  For me ignorance is bliss because I had NO idea what UC was when I was first diagnosed.  My friend had Crohn's Disease and it is very similar.  At first I thought I had cancer but was greatly relieved to find out that the UC is treatable....not curable, but treatable.  The ONLY drug which helps me reach remission is prednisone.  Unfortunately, I have developed osteoporosis from using it over the last ten years.  Four years ago I suffered a compressed fracture of the lumbar spine when I took a flop.  At times I have some lower back pain but I can live with it.
     Everyone with UC is different and can tolerate different foods better than others.  With this last flare (which lasted long...seven months), my doctor suggested I take a probiotic. They gave me Flora Q in the hospital but I take Powerdolphilus which I purchase over the net.  My nutritionist recommended it.  It's not as expensive as the Flora Q.
     I also follow a low residue diet while flaring.  Right now I am in remission...yippeee...so I can eat anything.  That's another crazy thing.  When flaring I am soooo sick I feel like croaking off.  However, when in remission I don't feel like there is a thing wrong with me.  Nuts huh?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Happychic
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/12/2008 4:54 PM (GMT -6)   
Pushingforward,
Just wait til you are in remission and can pass gas again w/o passing anything else! It will bring your appreciation of it to a new level:)
Sorry to hear about your "crappy" year (crappy in many ways, right?). Just hang in there - it sounds like you have the right attitude to handle this well!

LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/12/2008 5:20 PM (GMT -6)   

Happychic, it's funny you say that.

I remember being younger and always holding in a fart if anyone was around. If I could have seen the future, I would have farted my whole life away. You are soo right...when I fart right now, I feel like throwing a party.

I never know what's coming after...makes life a little bit tough.

I know I'm going to get through this...its the only way I can...by believing it.

I am scared about it, reading how everyone has all these long term symptons...makes me wonder if that's the next 20 years of my life. I won't think that way tho...I'll just think about it getting better and what I can do with the rest of my life.

I have already donated money to the Colitis and Chrones Foundation of Canada. I want to try to be more involved now that I am getting an understading of how this affects so many peoples lives.

I'll keep everyone posted and will try to be on here frequently.


 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 12/13/2008 1:39 PM (GMT -6)   
Hi Chuck, sorry to hear of your diagnosis.  just wanted to comment.  I am 36 and diagnosed at 25.  I am very athletic, put myslef through college on a swimming scholarship.  When I was diagnosed, I was relieved.  I now had a name, something concrete instead of everyone thinking this was all in my head.  I have been on prednisone 3 times in the last 10 years.  2 of those were caused by massive hormone flucuations.  I am kept pretty constant with maintence drugs, and probiotics.  I am hopeful that you will be able to lead a normal life with your maintence drugs as well.  The issue I have with the UC is that I never know if I am going to have a good day or not.  Every little twinge worries me.....it has made me  a little bit of a hypocondriac.  I wanted to tell you about that since I didn't see anyone on here talking about the emotional road you will likely go down.  I worry about my health, how this is affecting my children, my husband.  For me, that is the worst part.  I wish you the best of luck with your meds and I hope you are in remission shortly.  Have a great time on the slopes and keep us posted on your progress.

diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/13/2008 3:28 PM (GMT -6)   

Thanks lemonhead.

I have def had up and down days...and I know what you mean about "twinge". Just last night I was lying in bed and I heard the gurgling. I had to run to the bathroom. My girlfriend was like "Is that really your stomach?" I answered..."Yep, that's my 10 second warning...find a bathroom NOW or pinch those cheeks tight as can be and pray." I think she finally got it.

I try my hardest not to worry day in and out. I find my favourite music helps, try to keep busy, even if it's around the house near a bathroom some days...and relax at night. The emotional part is being generally athletic, then looking in the mirror and seeing my hips and ribs staring back instead of muscle and a love handle ;)

I'm getting there...I have to get used to the idea that this is a disease that will change my life dramatically. I love that I found this site. I check it all day when I'm around. It makes me feel awesome to hear about people like you who, even with some struggles, can live a normal life.

Just remember, when your feeling terrible or are worried about feeling terrible, feeling nervous does nothing to make it better, just makes it harder to deal with. I have to remind myself that ALL DAY...

Anyways..I'm in it for the long haul now I guess. I hope I can keep positive and active like so many of you have... Thanks for writing back to me.


 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/13/2008 3:31 PM (GMT -6)   

PS, I started my prednisone today.

Freaked out a bit by that. I've been doing work around the house and feeling a bit "spacey". DOn't know if it's all in my head yet...but this drug scares the sH** out of me.

A side note - I believe you are supposed to keep your electolytes up with this? Or is it another drug...i've lost track already.         Anyways....Coconut water is a great re-hydrator. It was actually used in wars as an IV for those who lost too much blood or something...look it up. (just don't drink too much...the equivalent of 4 coconuts can act as a laxative so I've read ;)

Have a good day all !!


 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 12/13/2008 5:26 PM (GMT -6)   
     What is your dosage of the prednisone?  Are you on any rectal meds?  Oh right, I think you mentioned that your UC is throughout the colon?  Guess the rectal meds wouldn't do anything then....maybe just treat the rectum.  They help me a lot but I have ulcerative proctitis.  Did your doctor recommend taking a probiotic too?  I think they are helping me.  Never heard of coconut water.  Just be sure it doesn't have a negative effect on you.  Prednisone can make you feel strange.  I know I have mood swings while on it, insomnia too.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/14/2008 7:50 PM (GMT -6)   
My dosage of pred is 50mg for 2 weeks, then tapering off for 9 weeks (5mg less per week). Is that somewhat the norm? I haven't had any side effects yet after two days...but maybe felt a bit spacey at times.
I was told by someone to take your calcium supplement later in the day as it can help you sleep. I am doing that in hopes of avoiding the insomnia.
 
Coconut water comes from young coconuts. I have drank coconut water before I had this as well. Never had a problem. They actually give it to athletes instead of gatorade sometimes. The pittsburgh penguins I know have tried it. The announcers were talking about it during a game one time. Read up on it...tastes ok too.
 
I have another colonoscopy in 3 months to check progress. I will mention rectal meds to discuss pros and cons with my dr. Hopefully things are progressing by then....
 
Thanks everyone for the support. Has made my first few days of being diagnosed a bit easier.
PS...I know I don't want to stay on pred too long....but.....I sure feel good today. It's 8:50pm and no D.
 
 
 
turn   turn turn turn
 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 12/14/2008 8:23 PM (GMT -6)   
     Oh, the prednisone will work, no doubt about it.  However, my GI doctor calls it the worse/best drug, meaning while it helps with the inflammation, it plays havoc with your system.  Sort of like selling your soul to the devil...I'll help ya, but let me take some calcium out of your bones first.
     I should talk..the prednisone queen.  My taper was a bit faster than yours...at least my last taper was.  I started with 40 mgm a week then every week thereafter dropped 10 mgm until my last week when I had to drop just 5 mgm.  It seemed to work, finally.  I had very poor responce when my doctor started me at 30 mgm.  When I finished that taper two weeks later the flare resumed.  I've been off the prednisone since Nov. 1st and so far, so good.  Kinda early for you to have side effects from the prednisone just yet.  Then again, maybe you will have NO side effects.  Let's hope that is the case.  Oh, another suggestion to ward off the insomnia...take the prednisone in the morning.  You can take the entire dosage at once.  I used to spread mine out throughout the day, but the doctor told me I could have taken it all at once.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 12/15/2008 7:46 AM (GMT -6)   

You should be good on 50mg of prednisone.  I was on 30, had no side effects except itchy feet, and hunger.  Maybe a bit of roid rage...you'll have to ask my famly about that.  But I always felt really good on it.  I am sure it was a mix of feeling great, and relief.  Something to watch for is mood changes...my doc wanted to put me on an anit-depressant while I was on it.  I declined and did OK, but don't be surprised if it makes you blue.  And from what I understand the prednisone will keep you in remission for months after you wean off of it.  If you are like me, take the prednisone, kick it into remission, wean off, and stay in remission for years with minor blips, but nothing you can't handle.  I am so glad to hear you are feeling better.  You have such a great outlook and positive attitude, and that will really help you along your "journey" with UC.  It is great to see someone just diagnosed with such a great attitude.  You have made me smile today and I am grateful to you for that.


diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/15/2008 3:27 PM (GMT -6)   
Well...I am trying my best to have the best outlook I can. I know I will have rough times...I already have a bit. It's hard to stay positive through those.
I'm just looking at it this way...while I can. I have it, I can't change it.
If I feel good on one particualr day, I'm going to enjoy it. I have no idea what tomorrow brings.
I know I don't want to be on the pred for extended time, but for now it's helping. So since I "have to" take it, I might as well accept the good with the bad.
 
Let's see how long I can keep this attitude!!! haha.
 
 
:-)  
I'm glad I could make you smile today lemonhead. I think it's great to have people to relate to. This forum has helped me immensly already and I'm grateful to everyone that has take their own time to answer my questions and concerns or give me suggestions. It shows alot about everyone's character here.
 
I hope I can be help to you people or others some day too...even if it's just making someone smile.
 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 12/16/2008 12:20 AM (GMT -6)   
Hi Chuck,

I was on prednisone once. I didn't mind the short-term side effects. It's the long-term side effects that scare me. Basically, prednisone ages the connective tissue. That's why it causes cataracts and osteoporosis over the long haul. Osteoporosis is a long-term side effect. Your bones won't become brittle so quickly (not unless you already have weak bones). I'm lucky in that I have strong bones. I saw a chiropractor after I got off the prednisone. He took some x-rays and said my bones were quite strong. However, he noticed two big packets of air--one on the right side of my intestines and the other on the left side. He said that if I had eaten something wrong, then I could have much air in the intestines, but because the air had formed into packets, it meant I had a digestive disorder of some sort.

I loose a lot of blood when I have a flare up. As a result, I become anemic. Being anemic definitely affects my sports. I often feel weak, light-headed, dehydrated, and out of air when I exercise. I absolutely hate it. It's worse than the runs to the bathroom.

-------------------

Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06

-------------------

Probiotics (orally and up the but)
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
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