Ugh, the pain!

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chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/3/2009 12:16 AM (GMT -7)   
19 days into a flare. The pain only started about 5 days ago. I'm having a scope in 7 hours, so I prepped last night. The pain is almost unbearable. I had to take a percocet yesterday and now I'm awake at 2am in more pain. I hate this. My GI took me off all meds (slowly) 5 years ago because the scopes were absolutely clear. He even wondered if I was mis-dx. I'm curious as to what he'll see this morning. SOMEthing bad is going on in there.

I just wanted to vent. It sucks being up multiple times in the night with pain/D. The prep also made me violently ill last night. I thought the gatorade/miralax combo would be better than the golytely, but it seems both make me vomit. Fun times. eyes
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/3/2009 6:03 AM (GMT -7)   
(((HUGS))) I hate the scope preps too. Hopefully though your scope today will provide some much needed answers. Be sure to let the doc know about your pain.

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"*
*~* http://www.healingwell.com/donate *~*

Post Edited (Nanners) : 9/4/2009 7:49:49 AM (GMT-6)


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 9/3/2009 6:48 AM (GMT -7)   
Good luck with the scope today Steph! I hope you're feeling better soon.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again.
Finally have appointment with a new GI! (9/3)
Current meds: 4g Pentasa, 150mg Trazadone, daily multivitamin, vitamin D supplement, Ativan as needed


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/3/2009 10:40 AM (GMT -7)   
Well, scope went great. Too great. No sign of Crohn's. WTH?!? I don't get it. Three weeks of D, a week of pain and nausea, and NOTHING is there?? He did several biopsies and he'll have those back in 4-5 days. Also the prometheus tests came back normal. I don't understand. :(
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 9/3/2009 12:16 PM (GMT -7)   

Chrisnsteph,

Glad your scope went well---was it a colonoscopy?  Just curious.  Since Crohn's can occur anywhere in the GI tract, will you also be having an endoscope to view your esophagus, and stomach?  Also, a colonoscopy doesn't check the entire small intestine (a CT and small bowel follow through does).  Also, blood tests aren't always 100% accurate.  Did your prior Prometheus tests show Crohn's?Just ideas---

Sorry to hear you're feeling so poorly.

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/3/2009 12:20 PM (GMT -7)   
Last flare, the Crohn's was in the TI, which is clear now. It was just a colonoscopy. This was my first time taking the prometheus tests.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/3/2009 1:05 PM (GMT -7)   
Just because the scope showed no active Crohns, that doesn't mean your not flaring. Maybe you should ask for a pill camera test. This is a camera pill you swallow, and it takes pictures of your digestive tract all the way down. This test will show the small bowel better. Hugs and 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"*

chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/3/2009 4:05 PM (GMT -7)   
COULD this be 'just IBS,' as the doctor put it? I've had diarrhea 2-6x/day for 19 days straight now. Doesn't matter what I eat. I have intestinal pain. It's always worse in the morning. No blood, very little mucus. No fevers. I'm losing weight, but I'm also dieting. However, the weight is coming off FAST (21 pounds in the past month). I'm tired a lot, but sleeping through the night (except last night, but that was due to the prep).

Right after I got home, I got a call from the doc and the prometheus tests came back. Completely normal. I had regular blood tests a couple weeks ago. My WBC was slightly elevated (11), but sed rate was normal.

The doc won't give me meds for anything until he knows what we're dealing with. He thinks maybe I was misdiagnosed in 2003 (the pictures I got from the scope show many, many ulcerations, bleeding, and the biopsy was 'indicative of crohn's'). I'm not sure if a misdiagnosis is even possible from that. But even if that WAS Crohn's, could this just be severe IBS?

He says the biopsies could show microscopic disease. I have a feeling they won't, and he'll call it IBS and put me on anti-spasmodics. I'm just frustrated that I still have no answers.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2009 6:53 AM (GMT -7)   
If you were diagnosed by biopsies then you have Crohns. Also, Crohns can be anywhere from the mouth to the anus. So a scope will not see everything. Too many docs put too much credence in the scope, and will say oh its IBS. I would ask him for the pill cam, that shows areas the scope can't reach. 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"*

chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/4/2009 9:18 AM (GMT -7)   
The pain is worse today. Could the procedure cause pain the next day? It makes sense, with so many biopsies. Should I call and get some pain meds??
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 9/4/2009 11:56 AM (GMT -7)   
I've had pain after a scope before, but usually it was just trapped air that went away that day. I'd say if you're still in pain, it's probably whatever was causing your original pain upping the ante. I agree that you should have a small bowel check. Ask your doctor about the pill cam or a CT scan.

And if you're in enough pain, ask for pain meds. Though they may not be very willing to give you any without a diagnosis.

Good luck; hope you feel better soon.
22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Humira.


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/4/2009 2:38 PM (GMT -7)   
I just spoke with my GI. He's calling in some tramadol 'even though the scope looked great and the biopsy results aren't back.' I asked what happens next if the biopsies of my colon are normal-would we do a pill cam or what? He said, 'No, it would just indicate IBS and we could do some anti-spasmodics.' I told my hubby and he said if this guy stops testing before he finds the problem, we'll find another GI, even if we have to drive further to get to him. Maybe it IS just IBS. I just don't know. I've been in tears off and on all day with the pain. I'm passing gas and diarrhea, so I'm confident there's no blockage. And doc said I wouldn't have pain from the biopsies. I just wish I could have an answer. I wish they would've found the crohn's so I could get back on meds for it.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/5/2009 7:41 AM (GMT -7)   
Well I disagree with the doc saying the scope doesn't cause pain. I always have to do mine on a Friday, because I need the weekend to recover from it. I always cramp for a couple of days afterwards. JMHO
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"*

chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/5/2009 11:05 AM (GMT -7)   
Well, I went to the pharmacy to pick up the tramadol and the pharmacist strongly recommended me NOT filling it. He said it's VERY bad to mix it with anti-depressants like zoloft, which I take 100mg of daily. I looked online and found the same thing. Lovely. He's going to call my doc, but due to the weekend and holiday, it will be Tuesday. I had some percocet and took some this morning because the pain had me doubled over.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission since 11/2003...currently suspect the beginning of a flare
dx with bipolar II 8/2009, still trying to figure it out
Omeprazole 40mg, zoloft 100mg


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 9/5/2009 12:19 PM (GMT -7)   

Chrisnsteph,

You may already be aware of this, but IBS does NOT cause bleeding, ulcerations etc; however, IBD (Crohn's or Colitis) can.  With IBS, there are no structural changes or damage to the intestines.  Something to consider---could your pain etc. be caused by a perforated bowel?  Although a perforated bowel during a colonoscopy is extremely rare, it does happen.  Symptoms range from abdominal pain, to excessive gas, to distension, to diarrhea, to nausea & vomiting.  If the pain etc. continues or gets worse, I'd sure consider a CT scan to see what's going on.

Good luck, and I hope you feel better soon!

 



54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 9/10/2009 1:05 PM (GMT -7)   
Hey Steph,

I just wanted to see how you were feeling. I was thinking of you because I am currently in a similar boat -- just got scoped today (upper and lower) and everything looked clear, even though I know something is going on with my Crohn's. They took biopsies, so I'll find out about them Tuesday and I'm having a barium X-ray next Friday. Are you feeling any better? What did the biopsy show?
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again.
Colonoscopy/endoscopy scheduled for 9/10; barium X-ray scheduled for 9/18
Currently taking: 4g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 9/10/2009 9:34 PM (GMT -7)   
I'm so sorry you're dealing with this. I, too, am wondering where you stand at this point.

I had a colonoscopy about a month ago - my first in about 3 years - and the last time I had one, my GI at the time said I looked "fine" even though I obviously was not. Moved to a new GI after I flared so badly it meant hospitalization for 2 weeks (just 4 months after my scope looked "fine").

Anyways, I knew I was starting to flare this time and I actually was hoping he would find something in the scope. I even told him that and he said he'd never heard that from a patient, LOL! I just needed to know it wasn't in my head.

It sounds silly to other people to hear someone hope they find something wrong but IMO it's a natural reaction.

*hugs*
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