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

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.......

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!!!!

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.

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!)

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)

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! =]

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!:)

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.

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.

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!

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.

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 !!

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.

 

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.

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.

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Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06

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