Not sure what to make of this

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JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/30/2009 8:28 AM (GMT -7)   
I was wondering what some of you might make of this as I am having some really bad pain. 
 
about a year ago I found out my CD had spread all over my colon, especially in the rectum.  No medicines helped and I finally went on Remicade which seemed to help after the first two doses.  I had no pain in my rear, no bleeding, normal stools and going 2-4 times a day.  I got my 3rd infusion about 2 weeks ago and I don't feel like it took this time.  I am starting to have pain in my *ss again.  When ever I go to the bathroom the past couple of days it is like I have a fire down there.  It is hard to wipe completely as it really really really hurts.  There is also a little bit of red blood on the toilet paper..none in the water.   I have never had any fistulas, strictures, tabs, etc associated with CD.  I don't know if it is just the CD acting up again or something new. I have an appointment with my doc come mid January but I am not sure if I can handle the pain until then.  I don't feel like it is ER worthy either.
 
Has anyone experienced anything like this and can give me insight.  I am hoping it isn't a flare of the CD cause that might mean that after I have gotten a full dose of Remi..that it isn't working already :(
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/30/2009 9:17 AM (GMT -7)   
It could just be a hemmie. I know anytime my husband has a flare up, because of the number of times he has to go, he ends up with hemmies. Are you on any other meds other than the remicade? I wouldn't give up on the remicade yet, though it could be that you need some extra help.

Perhaps a mesalamine or steroid suppository would help calm the area down, since it sounds like the issues are in the anus/rectum. Do you have any other symptoms of a flare up - tensusmus, diarrhea, etc? My husband is on remicade + 12 grams Lialda + 1 Canasa Suppository daily to maintain his remission. Given that Mesalamine is fairly safe, perhaps you should add that to your regimen, and see if it keeps things calm.

I would not wait until mid January to see the doc. I'd try to see the doc sooner, so that if this is a flare up, you can arrest it before it gets bad. At least call him, and see if you can get a phone consult, or something.

Also, Tucks wipes are a godsend when you have that burning feeling down there, and helps keep the area clean. I highly recommend using them.

I hope this is just a small road bump, and the road to remission will be clear once you get over this small road bump!

Hang in there.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/30/2009 9:46 AM (GMT -7)   

I can't use mesalamine as I think I am allergic to it.  I took one dose of Liada and had such a bad reaction to it I almost went to the hospital.  Lialda is the same dosage as the suppositories so that is out of the question.

I am not on any other meds as I have had adverse reactions to all of them..which is why I am on Remicade.  I have a mild case of CD but because I can't take anything else I graduated to the harsh stuff.  This was a last option for me.

Also, I am not really having any other symptoms of a flare.  I don't even have D.  It is still a formed stool and I am still only going 2-4 times a day.  It is just a lot of pain.  I have tried witch hazel and it didn't help much (the main ingrediant in Tucks).

Thanks for your help though.  I hope it is something simple like a hemmie and will go away real quickly. 


36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/30/2009 9:55 AM (GMT -7)   
Maybe a steroid suppository - that's normally what they do for bad hemmies too (Anusol is what the doc prescribed for my hubby). Or if you know it's a hemmie, you can try preparation H. Still, do talk to your doc without delay.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/30/2009 10:11 AM (GMT -7)   
Sounds like you might have fissure going on. A fissure is a small tear in your anus that gets irritated everytime you go #2. I would put a call into your GI and see if there isn't a cream or ointment he can prescribe. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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