Steroid enema / fear of steroids

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debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 11:25 AM (GMT -7)   
Hi everybody,                                                                                                                      
 
 
 First I would like to say this forum has been a great source of comfort as well as info these past few weeks as I sort through the ever changing flood of emotions and worries about having an incurable "disease" I know you have all gone through way more trauma than I have at this point and I feel a little like a wimp to even bring this post to the table, but here goes.
 
Yesterday I called my GI to find out the results of my colonoscopy I had two weeks ago.  He said it was Crohn's and he found several patches of inflamation throughout the entire colon, the worst part being in the sigmoid, and a very small bit in the terminal  ileum.  Up till now I've have had no treatment what so ever. He said he would phone in an Rx for a steroid enema, that would be safer than pills and I could try that first.  He said I would be feeling better within a month, so I was happy and said goodbye.  Then I went online to get more info about meds, steroids, side effects, ect...  Now I'm scared and confused.  I haven't gone to the pharmacy yet (I don't think he ever called it in yet) so I still have time to ask more ?s and change my mind before it's too late. 
 
Questions: confused
 
1-Is there anything safer and better with less side effects? 
 
2-Is weight gain a given? (overcoming major depression, can't handle gaining weight right now)
 
3-Is this what they usually start you out on?
 
4-In real life what do most people feel like after first using this steroid treatment? (sick, better ect..)
 
Any information will be greatly apreciated,  I'm already on meds for depression/anxiety (lexapro) migraines (Topamax) and ADD (Adderall xr) will it react and mess up this balance I finally found that works (it took a while)? My case is this, I have mild to moderate inflamation, not severe and no other complications that I know of.  I'm on medi-cal  because I am un-employed at this moment, so it is hard to find a good doctor to take you  or spend any amount of time on you (they don't make much money from med-cal patients).  So I have to do my own research.  Thank God for this place and all of you wonderful caring people out there!  God bless you all! 

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 11:30 AM (GMT -7)   
DO NOT BE SCARED....I too have crohns-colitis (CD affecting the colon where UC typically hangs out) and have suffered with proctitis (inflammation of the rectom) on and off for years and the ONLY thing that has helped with my proctitis is using steroid enemas...I use "cortifoam" once at bedtime because that's typically my least active time of day with my CD so I know the enema will be in until I "go" in the morning after a good nights sleep...

If you do not use the cortifoam or other steroid enemas you will increase your risk of disease activity getting much worse.

I have been on Cortifoam for as long a one full year BEFORE tappering off of it and never had a single side effect from it, the steroid via enema is much safer, since not much of it gets into the blood stream compared to taking oral steroids (prednisone) and that's why there are very little if any side effects from using the enemas.

I strongly suggest you get your RX for the enema filled, I highly doubt you'll regret it....I've been on and off it my entire 16 yrs of having crohns and for me it's the only rectal med that works.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 11:46 AM (GMT -7)   
tongue  Thankyou Thankyou Thankyou PB4!
 
My GI thinks I've had this for long time too.  I did have my appendix out in May, they thought it was a tumor cause it was so
 
huge and scarred from disease. They called it granulomatous appendicitis. Now we know it was caused by the Crohn's. 
 
I love your signature, it's my favorite, every time I see it I laugh. I don't have one yet.  Thanks again I'm feeling better already.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 1:38 PM (GMT -7)   
LOL! Well I'm glad you feel better, just wait until the rectal meds kick in!!!!

about my sig, I'm the youngest of 6 kids and when I was little my sisters (old hags) used to tease me saying my bum was broken because there was a crack down the middle of it...irony is, when I grew up and hit my early 20's I found out it really was broken!!!! So I told them they were right, they felt so bad that I got sick with CD (like they thought they had cursed me or something) but hey sometimes you gotta laugh right!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 1:53 PM (GMT -7)   
That's so funny! My nick name my parents called me when I was little was debbidookie. I guess they were too poor to buy a new crib for me and to one they had was missing a bar. So to keep me from falling out they turned that side toward the wall,(this was back in 1958 mind you) I guess I would always stick my butt through that space and some how poop or dookie as my Texan dad calls it down the wall. Thus debbidookie! I was gonna use that for my ID but it's kind of ebarrassing. I was the youngest so I got my share of relentless teasing. I know what you mean, you do gotta laugh! Thanks again. P.S. Maybe I will change back to debbidookie!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 3:04 PM (GMT -7)   
LOL...I like debbidookie, helps knowing the story behind it, and I think it's cute...funny how we all have our child-hood experiances molding our lives eh!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 3:08 PM (GMT -7)   
PB4, look I did it. debbidookie is back!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 3:10 PM (GMT -7)   
LOL, I like it.. mind you I get kinda lazy and usually shorten peoples names when I'm on here...but I like it!

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 3:16 PM (GMT -7)   
i"m not sure how it would be spelled either. how is dookie spelled? maybe with a Y dooky?  like doo doo?  or dukey?  They just called me that but I don't think any one ever put it on paper.  No documentation haha!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 4:37 PM (GMT -7)   
I think you can petty much spell it however you like so long as it gets the point across....ya could you imagine if that was your legal name??? Mind you there are some doozies out there, I went to school with a guy named Lucky Boy, no lie, and that was his legal name.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 4:45 PM (GMT -7)   
I ran the statement department of a 33 branch bank for four years so I've seen some doozies. Did you know there really is a Grizzly Adams?


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 6:34 PM (GMT -7)   
OMG really??? Poor guy, some parents are so mean arn't they? Then again, there are many who love having an unusual name...which I cannot figure out for the life of me why, but hey, whatever floats their boat I guess.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/11/2008 7:01 PM (GMT -7)   
If you have major depression then there are two things you should think about with steriods.l

First the enema is safer for you then oral as less will get into the blood stream.

Second steriods can cause psychological effects, depression, irritability, rage... so let all of your doctors knwo about your emotional state and any and all drugss you are taking and if you notice psychological effects get help.

Weight gain is optional. You probably won't notice a huge change in appitite with the enema.

debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 7:03 PM (GMT -7)   
PB4, I didn't get my enema yet. I live in the mountians and the local long Rx didn't have it. They ordered it so it will be here tomorrow. Whew!!! I get one more day to sweat it out. I don't know if thats good or bad, I sorta just wanted to get it over with at this point. Thanks for your support, I don't know what I would have done without your feedback. You've been through this for along time so I trust youve tried lots of stuff and know what works. Crohn's Colitis is what the Dr called it. Or Granulomatous colitis. For years I just thought I was a gassy constipated person. I thought maybe it was IBS or something. I never dreamed it would be something like this. I will be 50 on Feb. 9 and I'm having all kinds of revalations about myself. Some good most not. Must be the age of.........stop! Could it be menopausal symptoms? AAAAAAAAAAAAAAAAAHHHHHHHHH!!!!!!!!!!!!!!!! NNNNNNNNNNNNNNOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 8:00 PM (GMT -7)   
Oh gawd, not menopaus now too....well I look forward to menopaus actually because for the last 6ish yrs of dealing with crohns my periods have been horrible with exacerbating my CD symptoms (funny how the first 10ish yrs there didn't seem to be any difference during period time)...I never know what to expect now but it's usually not good, so being 41 myself I'm pretty sure menopaus will be here before I know it since times flies so fast the older we get (for me it seems to anyway).

Ya I refer to it as crohns-colits because it's easier to say than granulomatous and lets face it, the general public that are unaware of IBD struggle with the words crohns and colitis as it is. If I used the term granulomatous then they'd probably run screaming or at best, look even more confused then when I say crohns.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 9:10 PM (GMT -7)   
I was kidding, I don't think I'm having menopaus yet though I'm getting close. I'm still regular like clockwork and I don't have any of the normal hotflash stuff you hear about. But the PMS and emotional part is getting so bad, and like you said the crohn's symptoms are so much worse at that time. I just was thinking meno has to be right around the corner. I just hope it waits a little longer till I get all this other stuff under control. I used to take Ibuprophen for cramps, it's the only thing that works. last month was the last time I took it. I started bleeding really bad and now I can't take it anymore the DR says. What do you do for cramps?
Last time I had crohn's cramps and period cramps at the same time. I thought I was gonna pass out from the pain a couple of times. I have some vicodin from past dental work, I guess if it get really bad I could take one and go to bed. I'm due tomorrow, waiting for cramps to start at any time. Probably in the middle of the night. Why does everything bad or painful always happen in the middle of the night?


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 9:28 PM (GMT -7)   
One of my sisters is 51 and hasn't had her period for about 4 yrs and in the last 2 yrs has been getting hot flashes.

I don't get period cramps for the most part, my bowels just get messed up during that time of month...I'm pretty sure the main reason I don't experiance much cramping is because I exercise regularly so it's true what they say about doing stomach crunches to help with period cramps...for me at least.

Even at my most severe of flares of 30+ BM's a day with bleeding and lots of mucus, I've never had much problems with stomach pains so I've never had to take pain meds thank goodness...and I have severe issues with perianal crohns skin tags and even at it's worst I don't take pain meds, just lots of HOT sitz baths with plenty of epsome salts.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 9:47 PM (GMT -7)   
WOW!  30 bms! you poor thing! I'm not complaining anymore redface


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 10:04 PM (GMT -7)   
Well I'm hoping those days are "behind" me LOL and never to return but that's the thing with this stupid disease you don't always know what it has in store for you...When I was going through the 30+ times a day that's what finally brought on the depression and major anxiety, it's so weird, I lived through so many yrs before it got that bad and now thankfully I'm much better, not full remission but I'll take what I can get.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


debbikay
Regular Member


Date Joined Dec 2007
Total Posts : 102
   Posted 1/11/2008 10:19 PM (GMT -7)   
Well PB4, I'm so glad it isn't like that for you anymore. I haven't had anything near that severe. I think I better rush to longs as soon as that darned enema comes in! lol Thankyou for answering all of my questions, you have been so helpful and so much fun to talk to. I'm gonna go to bed now (actually I am in bed, I have a laptop) I might play a roung or two of bejeweled and go to sleep. My son saw me playing bejeweled on my laptop and he said "I'm embarrased, thats not even a real game!" It's fun for me! Good nite all.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/11/2008 10:37 PM (GMT -7)   
You're very welcome, it's great therapy for me and you're a pleasure to chat with...enjoy your bejeweled game (honestly I've never heard of it myself) and have a great sleep!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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