When will my meds work??

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ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 8/10/2008 2:56 PM (GMT -7)   
well after only being diagnosed less than a week ago..i started on prednisone and asecol and this weekend has been the worse ever!! friday night i was in so much pain that i was on the toliet for an hour..only being able to produce a bunch of blood and of course just exahuastion from all the pain, pressure, and me trying to "push" whatever is in me out just to get rid of the pain...and now again today, sunday, i've been on the toliet about 6 to 7 times with blood and nothing else coming out...im sitting here now with a heating pad on me hoping that the pain goes away..it just feels like i have to go all the time and its that painful "i have to go" feeling..im sure u all know what i mean lol...the doctor said in about a week i'll feel alot better..and this wednesday will make a week of being on meds, so hopefully i feel better soon! i was just wondering when these meds will actually kick in (if anytime soon!) and when this freekin pain is gonna stop..im just so worried that im gonna have bad days like these and not be able to go to class, go to work, or coach my cheer squad..and plus i have my GREs in a couple of weeks, my Psych GREs in october and then all that work to try to get into grad school...so it sucks...i hope i can get better and strong enough to do all of this stuff..i really cant see myself doing all of this when i feel so dead...but im hoping for the best!!! its crazy though!!!
21 year old Female
*\o/* active cheerleader/cheer coach, love working out, and a full time college student *\o/*
Diagnosed with CD August 2008
On Prednisone (for a month), Asacol, cansa (for 2 weeks), starting Remicade in 5 weeks


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/10/2008 3:11 PM (GMT -7)   
You might try going into the doctor pretty soon then...I just went through the same problems this past couple of weeks(couldn't eat, lost alot of blood/fluid/weight) and had to go to the ER because of the severe complications due to the blood loss. Prednisone by itself is not enough and asacol is so mild. I would go in as soon as possible..at least get some pain killers for a little while? They slow down the activity of your digestive system and give you some hours of relief. Of course you can't use them too long or they'll stop the system more than it should BUT if you can get some from your doctor I highly recommend it. They've helped me through a lot until I could get the proper treatment to start getting better. I'm currently in that process. Still losing blood but much less and the horrible 24/7 cramps have subsided.
I'm so sorry you're going through this and I wish the best of luck on your tests! Please, get better soon!!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec
Surgery for ectopic pregnancy in July of 2008.


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 8/10/2008 3:18 PM (GMT -7)   
aww thank u! im sorry that u had to go through this too! i know how it is lol..and plus ur young like me so im sure u know how that is too lol..yeah im gonna see my doctor in 2 weeks, but im calling tomorrow to let them know what is up just in case they think i should go in (my mom thinks i should see them soon!)..the blood loss is what is really scaring me...i get off of the toliet and just walk around in a haz and feel like im gonna pass out..its really scary...but thanks for the encouragement!
21 year old Female
*\o/* active cheerleader/cheer coach, love working out, and a full time college student *\o/*
Diagnosed with CD August 2008
On Prednisone (for a month), Asacol, cansa (for 2 weeks), starting Remicade in 5 weeks


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 8/10/2008 3:29 PM (GMT -7)   
It took a few weeks for everything to calm down when I started on prednisone. My inflammation levels in my body were super high, so it took some time for it to get it under control. Asacol is a mild medication, I used to think it never helped, until I decided to go off it. Then I started to flare! So I just keep with it!

Hope you start to feel better soon.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 4mg now, Asacol, Questran, Toprol XL (for high blood pressure).


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 8/10/2008 3:36 PM (GMT -7)   
oh Im, this is so much to go thru, and at least all of us here know that and don't mind you sharing your sadness with us. All I can tell you is the first weeks and months are often really bad...no way to make it go away until you go thru it. the pred should kick in really soon and that should help. how much pred are you on? have they checked your blood for inflammation?
the heating pad was my best friend, so I am glad you are using that. do you have someone taking care of you? it is really ok to be a big baby right now. all the meds and tests kick your *&^, so take it easy. try not to worry about the GRE and the fall; it will be what it is and you are getting the care you need. that's all you can do right now, sorry to say.
please keep checking in. I am a mom of young adults and a college prof (and yoga teacher!) so I have tons of sympathy and support for students like you. big hug, yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/10/2008 4:31 PM (GMT -7)   
IMAUD, I'm so sorry to hear you are going through this. It took me a while in the beginning for my meds to kick in. I remember what you are experiencing all too well. When was the last time you had an actual bowel movement? Are you constipated? If things get worse, please call your doctor. I hope you start to feel better soon. Blessings, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 8/10/2008 5:36 PM (GMT -7)   
very good advice and alot of encouragement..thanks! i hate feeling so useless and making my family take care of me, but when i feel like this i can barely get up and walk around, talking even bothers me! lol..too much energy wasted haha...yeah i dont remember my last real bowel movement lol..it must have been weeks ago...its basically constipation, blood, and a little diarreah...im thinking i may totally be anemic now..especially after today!..i just feel like falling asleep all the time now and just not with it really...im on 40 mg of pred for 2 weeks and then weaning off...the doc said he'll never put me on it again, if the asacol doesnt make me stable along with this shot of pred then he wants me to try remicade, but im hoping the pred does the trick soon and the asecol will just help me stay stable!...im talking to the doctor tomorrow..im supposed to see him in 2 weeks, still gotta schedule it, but i think he needs to know about all this blood loss..maybe he'll make me get my blood taken, my mom thinks i should! im feeling better now tho..i just took some anti diarreah stuff, i dont know if thats good to do, but i think it helped lol...atleast i can sleep tonight...i have a long day of work/practice tomorrow...here we go! lol...
21 year old Female
*\o/* active cheerleader/cheer coach, love working out, and a full time college student *\o/*
Diagnosed with CD August 2008
On Prednisone (for a month), Asacol, cansa (for 2 weeks), starting Remicade in 5 weeks


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/11/2008 2:39 AM (GMT -7)   
IMAUD, definately call your doctor today. He needs to know about the bleeding/constipation issues. Let us know what he says. Blessings, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/11/2008 5:23 AM (GMT -7)   
Don't wait two weeks!! You need to go in...everything you're describing is exactly what I was going through and it's extremely dangerous :( If you go in they can at least give you some fluids and maybe even blood to help the anemia, but you should really consider going in as soon as possible. I hope something gets done for you..you don't have to wait to call your doctor I mean you can go into the ER and they should admit you to the hospital. I dd that and then put down my GI as my primary care doctor so things were done much faster..
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec
Surgery for ectopic pregnancy in July of 2008.


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 8/11/2008 8:13 AM (GMT -7)   
i feel alot better today!!! and my doctor just called and im going in next tuesday to see him, but if it does get worse I will either call or just go to the ER..hopefully that was just a little problem that is now over with, but if it does happen again im not gonna mess around! Thanks for all the great advice!!!
21 year old Female
*\o/* active cheerleader/cheer coach, love working out, and a full time college student *\o/*
Diagnosed with CD August 2008
On Prednisone (for a month), Asacol, cansa (for 2 weeks), starting Remicade in 5 weeks


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/11/2008 12:49 PM (GMT -7)   
IMAUD, I'm so glad to hear you are feeling better!
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 8/14/2008 9:35 AM (GMT -7)   
ImAud, (love the name, btw), I'm still relatively new to the treatments, too. I've had mild CD since high school, but was only DX'd last October. Unfortunately, my GI took the typical start-at-the-bottom approach of treating it; use the most mild meds, and then go up the drug pyramid until something helps. There's been alot of new research showing that this technique isn't the best way. Some Docs are now starting with the high powered stuff right off the bat. With how severe your symptoms are, I wouldn't hesitate in talking to your Doctor about more aggressive therapies. After years of being a "sheep" (that being, "Yes, doctor, whatever you say"), I have learned that the best way to insure the best health care from your doctor is to educate yourself about your disease, and then taking an active part in your treatment. Don't just sit there and suffer after bleeding and cramping all day. Get on the phone.

I'm not a Doc, so please keep that in mind, but... Typically, high doses of steroids (prednisone, etc) are usually used to get the severe symptoms under control fast. High doses ranging from 40 mg/day on up. If your current dose of steroids isn't helping (usually they help within four days of starting them), then talk to your doc about the possibility of increasing your dose until it does. You'll need about three days to see the benefit from changing to a higher dose.

After the steroids get your symptoms under control, your doc will put you on some sort of "remission maintenance" drugs for long term use. Steroids *can* be part of that treatment, but usually at much lower doses. Usually, Docs will put you on some sort of mesalamine (like the Asacol you mentioned), but there is much controversy over whether or not mesalamine actually helps CD. In my case, it didn't. Mesalamine is the very lowest, most mild treatment there is for CD.

In addition to a form of mesalamine, your doc will probably put you on some sort of immunosuppressant or immunomodulator: Imuran, Azasan, 6MP, Methotrexate, Humira, Remicade, Cimzia, etc. etc. These are the Big Guns of long term therapy, and the ones used most often in more severe cases of CD. The problem is that most of them (methotrexate and it's relatives excepted) take quite a long time to take effect. Most docs will keep you on a moderate dose of steroids to keep you in remission until the long term drugs have had time to take effect, then they will taper you off of the steroids. My doc kept me on a minimum of 20 mg/day of prednisone until the long term meds took effect. Unfortunately, I'm still having to take the 20 mg. day of pred, but hopefully you won't have to. I would *seriously* question my doc if he was just going to give me steroids for a month and then just take Asacol after the steroids were gone. Especially if my symptoms were as serious as yours. There just isn't much chance of you maintaining remission from Asacol alone. It does happen sometimes, but not very often. Again, I'm NOT a doctor, I'm just going by my own experiences as well as those here and on other CD related sites. Just don't be surprised if your symptoms return after your done with the pred and he's just having you take asacol.

The very best advice I think there is when it comes to CD: read, read, read, read. Everything you can find about it. Educating yourself about this horrid condition will greatly improve your chances of finding adequate treatment, and helping your doctor decide what treatment is best for you.


Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.

Post Edited (CrohnsDaddy) : 8/14/2008 10:41:31 AM (GMT-6)


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 8/14/2008 9:57 AM (GMT -7)   
i totally get what ur saying (and ImAud is basically my name...I'm Audrey :) hahaha)...im seeing my doctor Tuesday so I'm going to mention this all to him...it's weird though, like the other night i felt completely fine! it was amazing! and then last night i was up from 2 to 3 on the toilet shaking and on the verge of throwing up...just having diarrhea and blood, lots of blood..and just now today, I had actually almost normal looking poop! lol...it was soft, but it had a shape and there was only blood around it, not all in the toilet like usual..i've been on pred for a week and a day now, and I'm wondering if maybe now finally it's going to start working. The doc said if it doesn't work he's going to put me on remicade after a 6 week dose and wean off from pred. I really think these next few days will determine if these meds are finally working! I thought I would have good and bad days last week, but it turned out to be only good and bad times of the day! I'm sick in the morning, late afternoon, and usually bed time. I'm hoping this passes though, but I will make sure that I tell my doctor about all my symptoms! No way will i do this for another week if it happens while I'm on prednisone! I'm just so confused between what is considered "normal" when first being treated for CD and what isn't considered normal..I'm not sure if this is how u r supposed to feel or if this is an extreme...my twin sister has ulcerative colitis and says that this is how it is until the meds start working, but i think she's being a jerk and totally not understanding what I'm talking about. She said that I just have to "get over it" and stop worrying so much! So i'm pretty pissed at her for saying that, because I totally don't know what is normal and what isn't at this point! If it gets any worse this weekend I'm calling my doc..if not I'll see him tuesday morning and let him know alllllll the details!
21 year old Female
*\o/* active cheerleader/cheer coach, love working out, and a full time college student *\o/*
Diagnosed with CD August 2008
On Prednisone (for a month), Asacol, cansa (for 2 weeks), starting Remicade in 5 weeks

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