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sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/22/2009 10:12 AM (GMT -7)   
Well its been awhile since I've posted on here.  I guess when you are feeling well you kinda forget about it.  Well its back with a vengance.  A little background, I lived with Cdiff and crohn's undiagnosed for about 6 months.  Cdiff nearly killed me.  Anyway by the time they figured out it was Cdiff my crohns had flared into an uncontrollable state.  Delicate balance between treating Cdiff and crohns.  We thought we had gotten both under control but it looks like the damage is not repairing itself.  I had severe sharp L and R LQ pain.  Which went away with remicade for 3 months.  Last week we bumped it up to 4 weeks and now 3 days later the pain is back.  I'm scheduled to see the dr Friday for a new game plan but I'm wondering from you guys if I should stick with Remi or move on?  I kinda wish I could get surgery to remove those two sections, they just won't heal....   FYI normal BMs just pain. 
 
Any thoughts?
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/22/2009 10:55 AM (GMT -7)   
Wow, you sound remarkably like my husband. He too was diagnosed with both c-diff and crohn's, and it nearly killed him too. He's currently battling another c-diff flare. Like you, we realize that treating both is a very fine balance indeed.

My husband recently relapsed with c-diff, but we didn't catch it because of diarrhea or the smell or cramps. He just felt tired, had some sharp pains, and so we got a stool test just to be safe, and it was positive for c-diff! If you have any symptoms at all, I'd recommend getting the simple stool test for c-diff just to be on the safe side, even if it doesn't seem like c-diff isn't the problem.

Is the damage in your colon inflammation or scar tissue? If it is scar tissue and it is causing blockage, maybe they can do some kind of balloon inflation or something like that (if that is even possible for the colon - I know they do that for the small bowel). If it is inflammation, maybe adding Lialda back can help bring down the inflammation, or some other med like 6-mp, imuran or methotrexate. Or maybe a short course of steroids will help bring down the inflammation.

I hope you figure out the best course of action for you, and you get relief.

(((Hugs)))
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


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 9/22/2009 11:05 AM (GMT -7)   
How long have you been on remicade?
Humira 2 times a month.
Prednisone 10mg every other day, down from 20mg every other day. :)
Lialda 2 X day.
Imuran 100mg day
Phenergen PRN
Remeron 15mg day
Pain Meds


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/22/2009 4:03 PM (GMT -7)   
After dealing with Cdiff for 6 months I got a round of antibiotics and then started on Remicade July 1st. Almost immediately after starting remicade the pain went away. So I've been on it for about 3 months. I don't have D or mucous. A little bleeding though. But the sharp abdominal pain has returned. I tried with steroids months ago and got serious myopathy. I still have severe leg pain and I've been off the prednisone for 4 months now. I tried Lialda and sulfites and enamas about 6 months ago and it gave me serious D. Dr. says he does not want to give me anything that will cause more D because it will just irritate the ongoing inflammation. But it may be a different story now with the Cdiff gone I don't know.

When they did the colonoscopy dr said it looked like someone took a brillo pad to it and that is the same spot where it hurts. Its just not healing for some reason. So, I don't think its scar tissue.

Thanks for your help!
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/25/2009 4:15 PM (GMT -7)   
Hi guys
Just back from the dr. Alot of information to process, so I took my husband with me. Anyway, he said that something else may be going on besides the crohns, so I have a CT scan scheduled. It will be interesting to see if the colon has healed. Every time I had one the wall of the colon continued to thicken. So if it is better the remicade is working. I think he is suspecting something with my ovaries. Great! I'm so confused and don't know what to think now. He also said the diagnosis of crohn's was not definite bc it looks like UC (location wise) but biopsies revealed granulomas which are only present in crohns. So he said safe to say crohn's colitis. I just want to feel better..... The pain continues after only one week after my remicade infusion.
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 9/25/2009 5:07 PM (GMT -7)   
I just got my first c-diff infection. I didn't realize you could have it for so long and not know. My fever kind of did me in so now I look back and wonder if my symptoms were due to c-diff for longer that what we though. I too have a big question mark over whether or not I have cd or uc. I'm tired of being sick. My flares always used to respond to pred but I've been flaring so long I don't even remember when I last felt good. I haven't tried remicade yet. I have an ultrasound of my ab on Monday. I have been getting bad stomach aches. Worried the cd has decided to hit my stomach or something but hopefully I'm just being paranoid. They are tapering my pred without giving me anything new to fight it. Seems like a weird strategy to me. Either I'm falling through the cracks or I'm confusing them so bad they don't know what to do.

I hope you get better soon sickofitall. This is a hard way to live.
Dxd CD in 2003. Scope Aug/09 shows UC.
Meds: Colazal, prednisone, vancomycyn, prilosec, darvocet, bentyl
Currently in bad flare-up


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 10/2/2009 4:58 PM (GMT -7)   
Dr called and said the CT scan showed a Kidney cyst on the right.  So, ultrasound scheduled to figure that out and a flexid on Tues. to figure out the left abd. pain.   I'm wondering if this cyst is from Remicade?  I also seem to have bad sores on my face.  (never had that before)  I hope he says I'm all clear to get off remicade.  Drs talking about 6mp or Az.  The only issue I'm having is the pain on both the R and L lower abdomen.  No digestive problems since starting remicade so I'm scared to get off too.
 
Any body else had this reaction with renal cysts?
 
Thanks!
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/2/2009 6:42 PM (GMT -7)   
Hi. I'm glad your doctors are doing the work to get to the bottom of things with you. My husband has been on remicade for about 18 months now. He pretty much was diagnosed with crohn's along with c-diff infection as well. He hasn't had any issues with his kidneys, so I can't offer you any advice there. I don't think Remicade causes any cysts . . .it could just be a coincidence.

As far as the abdominal pain goes, have you been tested for c-diff again? If not, you should get tested for c-diff again . . . if our experience is anything to go by, when you have crohn's, and you are immunosuppressed with remicade, c-diff can come back at any time. So, do get tested again. For my husband, c-diff both times has started as a sharp pain right at the top of the ribs . . . so I wouldn't be surprised if your abdominal symptoms are because of c-diff. If you still have bleeding, there's still something going on . . .so it sounds like you need the CT and also the c-diff test.

One thing we've decided, is that everytime my husband feels sick in the stomach, we'll get a c-diff test . . . since it seems to happen quite a bit with IBD people. Remicade is what helped my husband out of his terrible crohn's flare - if he can continue taking it, and keep c-diff at bay, that's what we're going to try to do. So, I'd recommend continuing with the remicade, if your doctors think that the remicade is not causing the kidney cysts, and if kidney function is fine.

Good luck, and I hope you find relief soon.

(((hugs)))
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


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/2/2009 7:00 PM (GMT -7)   
Heitmeiser:

What are your symptoms other than pain? Do you have diarrhea or constipation or blood in stools or anything like that? One of the things that they mention, and that we are currently struggling with, is possible post infectious IBS. My husband now tests negative for c-diff, but has been dealing with food intolerances (which he didn't have a month ago), gas, and weird bowel movements, and having to sometimes get up in the night to go poop, and some unsettled feeling in his stomach. Our GI says that c-diff and it's treatment does a number on the colon, and that sometimes, after c-diff, about 20-25% of people can end up with post infectious IBS, and this is what he hopes is going on with my husband.

It's so hard to tell from symptoms alone whether it's c-diff or crohn's or IBS really. If you have any of the classic symptoms of c-diff (such as large watery bowel movements with lots of frequency and urgency), or of crohn's (such as blood), and it continues for 3 days or gets worse, you need to see the doc right away, and try to do something about it. We are using the 3-day rule - if something continues for 3 days, or if it gets worse, it's time to go get tested for c-diff, and if it is negative, do more diagnostic work to see if the crohn's is flaring again.

High dose solumedrol (120 mgs) did nothing for my husband when he was flaring and he was fighting c-diff. Without remicade, my husband would definitely have had surgery. And it is my belief, that my husband would have been in the same boat now as well when the c-diff came back . . . except, the remicade is keeping the crohn's at bay. It's been a Godsend for my husband, and I think if you have some serious inflammation going on, regardless of whether you have UC or crohn's, you should try it. He felt better with the second infusion.

It is my opinion that c-diff makes a crohn's flare up really really bad. Crohn's basically they think is an immune condition that attacks the digestive system, because it misidentifies normal flora as being invades . . . introduce something really bad like c-diff, and the immune system dysfunction that causes crohn's in the first place goes completely out of control. This is a complete guess of course, and really has no medical backing . . . I just _feel_ that my husband's crohn's flare ups will be much milder without c-diff in the picture, much much more manageable, and probably will respond to steroid medication. But you put c-diff in the mix, and there's nothing else other than remicade that would do the trick. I am really looking forward to the more novel therapies they are coming up with for battling c-diff, including the c-diff vaccine that it's in the works. Can't wait, want it now! Of course. :-)

Hope you get to feeling better soon. Hang in there. And don't be afraid to try remicade.

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


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 10/19/2009 5:40 PM (GMT -7)   
Hi guys!
 
Just wanted to follow up with what happened.  Dr. says that the flexid (Sp?) showed signs of inflammation in spotted areas.  Last time the ulcers and inflammation were continuous through the lower colon area and now they are sporadic in small areas.  He says to continue the remicade because it is obviously working to heal my colon.  I also had an ultrasound on the kidney and they said it was nothing to worry about and should not be causing any pain.  My problem is I am still having this sharp LLQ and LRQ pain.  To the point where I get doubled over suddenly, then it goes away.  Dr. says if this continues he may add 6mp if the pain continues.  But I'm kinda concerned it may be my ovaries and don't want to add another med if it won't help.  Its not crampy pain nor is it relieved with a bowel movement.
 
Endometriosis has always been of concern.  I have had bad problems w/ periods in the past.   That would make sense as far as it the pain not getting better after the infusion.
 
But now I can't tell what is what??
 
Thoughts?
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 10/19/2009 7:13 PM (GMT -7)   
What is C-diff exactly?
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying

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