Flaring BAD, need advice.

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BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 9/26/2009 8:28 AM (GMT -7)   
Diagnosed at 21, about to be 35. Last flare was 4 years ago, around this same time. I'm on Humira every two weeks, one pen. I'm not quite sure it's doing it for me. It seems like I start feeling bad a week before it's time to take it again. Anyway, I can't see my doctor until Monday or I hope I can see him then. I'm in such pain it's almost unbearable. I am having severe cramping all in the front and into my back. I haven't slept and I can't eat. I have some entocort left over from the last time I was flaring. I was wondering if any of you have taken steroids without seeing your doctor first. I'm desperate. I guess I'm just wondering if it's a bad idea to take the entocort without asking him. I really just don't know. I'm hoping it would hold me over until I see him. Any thoughts will be greatly appreciated.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/26/2009 8:49 AM (GMT -7)   
Some people here do take steroids on their own to try to get things under control. I'm not sure the entocort would be able to do much in 2 days. Your inflammation may not even be in the area where the entocort is effective. But as long as you've taken it before I don't think it would hurt you. Hang in there.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 9/26/2009 8:51 AM (GMT -7)   
Dana31,

I am sorry you aren't well. Are you having bowel movements and/or passing gas? We first need to rule out an obstruction. If you are in that much pain, I think you should go to the emergency. Maybe your GI will have you take Humira once/week, that is the dose I take. I have taken prednisone myself knowing I am seeing my GI, but you need to consider that it can disquise things and hide infection ie no fever.

I hope you get some relief, I hate to think of you in so much pain.

Take care,
Julia

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/26/2009 8:53 AM (GMT -7)   
I am wondering if the Entocort is four years old if it is even still any good? It could be that you need to switch up your meds as the Humira sounds to be petering out on you. Maybe its better to wait until you can see your doc. I am sure he would write a new script. I am thinking if you are feeling so bad, could you not go to either the ER or an urgent care clinic to get something to hold you over for the weekend? Sure hope you get feeling better soon. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/26/2009 9:35 AM (GMT -7)   
Good point Nanners, if it's 4 years old it may not do anything anyway.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/26/2009 10:08 AM (GMT -7)   
I'll double, more or less, the dose for about a week and a half on my own. If it works then of course you slowly taper down, and if it doesn't then it's time to see a doctor.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 5 mg, pentasa 2 pills 4x a day, omeprazole in the morning, and a women's multivitamin. I'm also trying a B vitamin complex, but it doesn't seem to be working so I'm considering the shots.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 9/26/2009 10:13 AM (GMT -7)   
The entocort is about a year old, I guess I had a semi-flare when I was transitioning from remicade to humira. Sorry I made it sound like it was 4 yrs old. Here are my symptoms right now. The flare started on Thursday. I was cramping so bad I couldn't do anything but lay on the couch, I had a slight temp, and my bowel movements were very off for me. I was constipated, and I ALWAYS have D. I went a few times that night and it was very hard to go every time. As of now, I'm having really bad D (like water going through) but I have only had ensure and chicken soup to eat. I do kind of feel like I'm blocked up or something. My abdomen is huge. No gas and some rumblings, just not my normal bowel stuff going on right now. I just feel heavy and full in my abdomen.

ALSO thanks to all of you for your input. The understanding itself helps tremendously! This site is a wonderful outlet and I am so thankful for it!!

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/26/2009 11:41 AM (GMT -7)   
I have prednisone that I can take whenever I think it's necessary. I would at least tell your doc (or one of his/her nurses) and say that you are going to go on entocort. Best of luck.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/26/2009 1:56 PM (GMT -7)   
Constipation followed by D often means a stricture is the problem. It could be from inflammation or from scar tissue, but either way, you need to see your doctor about it. Maybe it would be a good plan to go to emerg for some diagnostics...

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/27/2009 7:33 AM (GMT -7)   
I agree with Keeper, you sound as if you have a stricture/blockage going on. I would not self medicate at this point. If the pain gets too bad, I recommend going to the ER. If you cannot move air or stool thru your system, you could have an obstruction and those can be dangerous. So if you get pains that are centered around your belly button and come in waves like labor pains, get your butt to the ER. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 9/27/2009 8:20 AM (GMT -7)   
Oh my gosh! That's how I was feeling Thursday night, the only way I could describe it was like "labor pains". I'm feeling better now, it must have opened up some because I'm able to pass stools now, just not much. I'm still having the pain in my abdomen, but the cramping has subsided. I'm going to try and get into my doctor tomorrow or asap. Do you think that'll be okay? I think I'm over the emergency state.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/27/2009 8:50 AM (GMT -7)   
Yeah if you are feeling a little better I think it can wait until tomorrow. But if for any reason it returns, go to the ER right away. Try to stay on very liquidy diet until then. That should help some.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/27/2009 4:02 PM (GMT -7)   
I suggest you go to the ER if the pain is that bad, I do NOT suggest starting pretz before you speak with a doctor.
I hope you feel better real soon!!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   

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