Can't get this flare under control!

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mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 11/15/2008 10:23 AM (GMT -7)   
ok- so it's been months now...prednisone has tapered down to 5 mg, still taking 12 Asacol pills a day...nothing else (trying Rowasa, but can't keep them in long enough to judge their effect).  This flare has been going on for months now- I got a lot better but now it seems to be getting worse again...
1- Urgency to go to the bathroom about 7-8 times a day, but when i get there it's just a bit of blood and mucus
2- More blood again- it's not scary amounts, but still disconcerting...
3- When I try to go to sleep if I lay on my side I immedietly have to get up to go to the bathroom -- weird (has anyone else experienced this?)
 
Any thoughts?  Also does anyone have any idea how to keep Rowasa enemas in for more than 27 seconds?  I think the things should come with a cork!  haha

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/15/2008 10:42 AM (GMT -7)   
Sorry you are feeling so rough. This DD sucks doesn't it. I think you should contact your doc since you are having such a hard time with the enemas.

I did want to tell you that if I lay on my right side for too long I definetly get sick too. Its nice to know I am not alone with that. I can lay on the left side no problem, but on the right, I get a build up of gas and then am in the BR soon after.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 11/15/2008 5:29 PM (GMT -7)   
Im sorry too you are going through this :( Has it gotten worse since the pred taper?
I am like Nanners, laying on my right side causes pain and a trip to the bathroom.
Can't help with the enemas, as I have'nt had to use them - yet.
Good luck and keep us posted on how you are doing.
Jo

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 11/15/2008 7:37 PM (GMT -7)   
thanks! i mentioned the laying on my side thing to my doc and he was like huh??? haha- thanks for the support!

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 11/15/2008 10:48 PM (GMT -7)   
Oddly enough, I mentioned the laying on my right side thing to my doc, and he said that it has something to do with my illeocecal valve (sp?). He said that the valve that controls the flow of waste from your small intestine to your large intestine is located on the right side, which might explain why putting pressure on it would make you have to go to the bathroom. He suggested placing a cold water bottle on it for 20 minutes every night to help it "close" and stay closed... and it really does help me sleep better some nights. It might be hogwash, but - it seems to be helping a bit.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 11/15/2008 11:05 PM (GMT -7)   
wow.  thanks!  i will give that a try!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/16/2008 12:40 AM (GMT -7)   
How long have you been using the Rowasa for? It can take a while for rectal meds to kick in...I prefer cortifoam myself, it usually works within a month but it does depend on how bad the flare is in the rectom...I've been on cortifoam in the past for as long as a month before tapering off of it, but that was the one time I had to be on it that long in my entire 17 yrs of having crohn's so that's not bad, like I said, for me cortifoam usually kicks in quick depending on how bad the flare will depend on how long before you notice improvements...maybe if you don't notice any improvements you should ask your doc to switch you onto cortifoam?

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


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/16/2008 3:44 AM (GMT -7)   
Sometimes the cortifoam that pb4 has suggested is easier to retain. I used to have the hardest time retaining the enemas! I use hydrocortisone enemas as needed. This is what has helped me....

1. I soak the bottle in a sink of warm water for about 10 minutes. I have found that a cold enema makes me want to go immediately, where as it is better warm.

2. If you can remove the top of your enema, then try to expel any air that is in the bottle before insertion.

3. Once you insert the enema tip, take a few deep breaths to try and relax. Then, SLOWLY squeeze the contents in.

4. Continue to take deep breaths and try to relax.

5. Try to give yourself an enema during a time of day when your bowels are least active.

I am unable to retain an enema overnight. My GI said even 1 hour would be helpful. After the enema is in, I lay on one side for 15 minutes, then on my back for 15 minutes, then the other side for 15 minutes, then my back again for 15 minutes. This will ensure that your colon is coated properly.

I hope these suggestions help you. Good luck!:-) Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/16/2008 10:37 AM (GMT -7)   
Thats very interesting patientspiders about the valve. But whats weird for me is I lost my valve in a resection, but still can't lay on that side for long. And the problem started after my surgeries.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 11/16/2008 7:30 PM (GMT -7)   
thank you all! i will try your suggestions as well as looking into the foam. I can barely keep the darn enemas in for 1 minute before i'm running to the can! haven't been on them long- basically a week (but that was wasted due to hte lack of retention...)
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