Flare-up Quest. for long-time sufferers!

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jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/23/2007 12:11 PM (GMT -7)   
I've been newly diagnosed, about 2 months now. I'm on Entocort, Pentasa and Percocet for pain. I guess i have an enormous deal of inflammation and am also anemic. I was wondering how long severe flare-ups tend to last? And being on all of this medication how long can I hope to stay in remission?

rubixqueen24
Regular Member


Date Joined Dec 2004
Total Posts : 162
   Posted 10/23/2007 1:06 PM (GMT -7)   
It really depends on the person. I will say this though, that sometimes it takes a while to get the right meds. This is a great place to be you can bounce off a lot of ideas and learn a lot from us. Good Luck!

jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/23/2007 3:59 PM (GMT -7)   
Thank you. Guess I'll just have to muddle through.
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain 


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/23/2007 4:39 PM (GMT -7)   
I think it varies from person to person, but I got diagnosed 8 months ago in a really bad flare.  I took all that stuff pentasa, imuran, you name it.  I'm on Remicade now and I'm still not straightened out, but I hope you have better luck than I have.
DX: Crohns in March 2007
Meds: Remicade


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/23/2007 6:44 PM (GMT -7)   
Are you able to function from day to day?
Can you hold down a job? Are you in pain everyday? These are things I'm going through right now. I'm in a great deal of pain still and I'm hoping the drugs I'm on now are helping because I don't want to be switched to prednisone. Is the Remicade helping for pain?
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain 


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/23/2007 6:57 PM (GMT -7)   
Its helping some, mostly with my joints. My stomach still hurts all the time and I'm so sick and tired of being sick and tired. I don't know why this happens to people but I guess its one of those things we just have to deal with. I think I'm still trying to accept it and am angry at the world right now. I was on prednisone for a while but it makes me CRAZY (really) so I know what you mean there. Good luck and I hope we find some relief ASAP. I don't know how much more of this I can take.
DX: Crohns in March 2007
Meds: Remicade


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/23/2007 7:15 PM (GMT -7)   
It's so nice to know there's other ppl out there with the same probs. I'm so tired of being sick! I've had to miss out on so much and I know no one can really understand that one day it's under control and the next, I'm doubled over in pain not moving off the couch. Thanks for your replies. Have you had any surgeries yet? I guess I have that to look forward to at some point.
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain 


john's girl
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 10/23/2007 7:34 PM (GMT -7)   
The Entocort really helped me get out of a flare, but I was also prescribed Imuran at the same time. If the Pentasa doesn't seem to be doing much for you (it's a pretty low-level drug), you might want to think about moving up to Imuran or 6-mp (the sister drug). The day-to-day logistics of flaring are the worst, I feel for you. I hope remission comes soon for you!

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 10/24/2007 5:02 AM (GMT -7)   
Jenny...I just had to say something positive here. You see, we all tend to come here more often when we are sick or feeling crummy or having a problem. There are times that get better for many of us---and most of us are off living life instead of being here to say how great we feel.
I was diagnosed in 1990. I "felt crummy" for several months after my emergent surgery. However, I had years of remission with little or no pain just other symptoms that seem minor compared to pain. I had flares that lasted weeks then were over after some prednisone. I have only been on Pentasa for the last 13years.
Everyone is different. I just didn't want you to think that there are no good days ahead.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Concerned mom!
New Member


Date Joined Jul 2007
Total Posts : 19
   Posted 10/24/2007 5:20 AM (GMT -7)   
Jenny, take one day at a time.....everyone is different....my daughter
has had CD for 3mths been on predisone/pentasa.....lots of abd pain
all the time....But she went for her iron infusion a couple wks ago
and there has been a turn around, she is still having tenderness but
she has more energy and can function.....But we take one day at
a time because you never know w/CD....Hope you get feeling
better, this is a great site for support.....

God Bless
My daughter was just diagnosed w/CD on 7/12.
She is currently on predisone which Dr. is weaning
her off. Pentasa and Nexium.


crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 10/24/2007 7:56 AM (GMT -7)   
It took me a little over a year to get the right meds with many hospitalizations, tube feedings and a surgery, but am happy to say that I've been in remission for what will be 10 years in November. So even if I should flare any day now, at least the past ten years have been great.
 
Sharon

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/24/2007 8:21 AM (GMT -7)   
From my understanding it can take as long as 6 months for some maintenance drugs to kick in...if you're dealing with major severity then often they'll give prednisone as a "boost" for the maintenance drugs to kick in.

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


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/24/2007 9:26 AM (GMT -7)   
Thanks to everyone who's posted replies; this support is amazing! I'm going to the doc on Friday so I'm definitely going armed with more knowledge to my appt. Thanks again!
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain 


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/24/2007 3:05 PM (GMT -7)   
Its a battle, but we will make it through. I'm not currently working, I applied for my disability. I have two small children and this disease makes it rough, but what the future holds we never know. I haven't been able to gain remission yet, but there's a lot that have had no problem. It varies from person to person and I hope your illness gets better soon! Good luck to you and let me know if you need anything :)
DX: Crohns in March 2007
Meds: Remicade


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/26/2007 3:27 PM (GMT -7)   

Hi

I read your post and sounds like we were diagnosed w/ crohns around the same time about 2 months ago.  I am also on entocort and pentasa.  My symptoms have not gone away or lessened at all and include diarrhea up to 8-10 times a day, alot of gurgling and noise in my intestines, gas and bloating.  I have alot of pain when I eat bread products and eggs.  I am avoiding dairy and wheat.  There is not much left to eat right??  I am trying to hold off going on the prednisone but maybe I will ask to try the 6mp first.  Do you know if you can get the inflammation down with 6mp.  I know 6mp is an immune suppression drug but if it stops the body from attacking itself then we can heal ...I think??? 

What are your symptoms?

Christine


MV
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/26/2007 5:38 PM (GMT -7)   
My Pentasa (4mg daily) tends to clear a flare up in a week or so, although its fairly controlled. I think when i first had it diagnosed, they used Prednisolone at 30mg daily which was tapered down over 6 months. As other replies have said, it can vary from person to person.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 10/26/2007 6:05 PM (GMT -7)   
Jenn, now you can really see this is a very individual disease. No 2 people are alike. Imuran & 6MP take 3-6 months to get in your system, so they are not quick fix drugs. You need something else fighting the battle while one of those is trying to get in place to battle. I had a resection 5 yrs ago of the small bowel, spent 3 1/2 yrs on Remicade and it finally sort of lost its punch. I am now on Entocorte, Lialda and Imuran. If I try to stop the Entocorte I start into a flare and I have been on it 16 months. Lets hope you get on a medication that really helps you.....Susie


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/26/2007 10:16 PM (GMT -7)   
I was just put on prednisone about 2 days ago, 40 mg., since my pain has sky-rocketed this past week. I'm off the entocort while I'm on the prednisone, and hopefully will be tapered off before any horrible side effects kick in. I believe it also lowers immunity. My doc ordered another CAT scan to compare to the one I had before I started the meds, he's trying to find out why my pain has gotten so bad; maybe strictures/fistulas. He said after the results of the CAT scan we'll figure out what other meds he'll add; i.e. 6mp, Humira/Remicade. Not sure yet.
If you like dairy, I switched to Lactaid, which is actually really good. I eat a lot of plain noodles, like spaghetti noodles and angel hair pasta, with butter. My symptoms have been constant abdom. pain mostly on my right side and it wakes me up at night. I've been on some serious pain pills for the past week and have been living on the couch. My bad BM's come and go, it'll be horrible one day and I will have maybe one another, like pencil-thin. Anyway, your doc will prob. try the prednisone first, even though i begged not to be put on it; i guess that's the next conventional step. Also, try Ensure/Boost. I just bought some today, maybe it won't hurt as bad as eating solid foods.
Jennifer
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/26/2007 11:15 PM (GMT -7)   

Hey Jenn, I know what your going thru (I'm sure all of us do, hehe)
I was on Pentasa at the start and it helped, but faded, so I went on Entocort 9mg/daily, it took about 2 months to kick in, then got off it about 6 weeks ago as it stopped working.

I guess the doc took you off the entocort b/c your in a bad flare and need help asap.  Entocort can take up to 3 months to fully kick in. Pred takes up to 7 days max until it kicks in fully, but the least 3 days. I never had any symptoms until day 4 at 40mg. I've been going down on the pred, over the last few weeks, now at 35mg. The side effects are horrible but it does help the stomach pain/cramping, however I'm still having the pain here and there, but it's partially due to food. Keep a watch on that and see what bothers you.

Whatever you do, don't give up and don't stop taking the pred if you feel worse or better without talking to your doc.
The pred shuts down your steroid glands and your body works on the pills.  It does lower your immunity, just like imuran, 6-mp and many other drugs us crohnnies gotta take, but just avoid people who are really sick, wash your hands a little more than the usual and you'll be fine.

Pencil thin poop or pebbles is b/c you might be constipated from the percocet, I got that from it and it's kinda of annoying.
Also, be careful, percocet can be very habit forming if you take it for a while. I know your in a lot of pain and plain Tylenol does nothing, i'm in the same boat. I wish the best for ya and hope it all goes away soon :)



DX with CD May 2006 @ age 22
Tried Pentasa and Entocort, worked for a yr and a bit
Now on prednisone 37.5mg and having some side effects, "..time goes by so slowly..."
"We're always here for you if you need to talk!"

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