Please help (those that know me)

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Nana CC
Regular Member

Date Joined May 2007
Total Posts : 121
   Posted 8/31/2007 3:54 PM (GMT -7)   
OK! Last week I posted that I have finally come to accept that I have this disease and I have been trying to have a change in my thinking which has really been working well for me. Today I got a call from the Austin GI doctor's nurse about my colonoscopy. She said there was no signs of Crohn's in my colon and that I could taper off the pred. That he wanted to see me in a month if I needed pain meds see my PCP and have a colonoscopy every 10 years. I hung up going WHAT? After thinking about it for a half hour I got the distinct impression they were telling me there was nothing wrong with me. I had told them since I went that my pain was more around the umbilical area and upper R and L quad. So after thinking about it my understanding is that Crohn's can affect any part of the digestive system and just because it is not found in one part does not mean that it is not in another part. Please if this is wrong let me know. So anyway I called backed and asked them about that thinking and they said that is why the doctor wants to see me in a month to talk about that. I asked could it not be in my small intestine or stomach? Thinking that the asacol which is made for the colon might not do it's job higher up. Then I also questioned why when they took me off the Librax the cramps came back. I saw a doc here in Temple who I told the doc gave us the impression that the colonoscopy looked good and that would be a sign that the asacol was working and that increasing the imuran might help with other locations. So I don't know what to think. Maybe it was C-diff and the meds are keeping me feeling bad. I just don't know what to think! I know I have not been able to get off the pred since May cause once it gets down to 10mg/day I get d back but could that just be a side effect of coming off of it and will go away. I would love to get off all this stuff and go back to being normal. I need to know what you experienced people think. Can it be affecting my small intestine or stomach without affecting my colon at the same time? Could I try getting off all the meds without putting myself in danger to see what happens?  PLEASE LET ME KNOW WHAT YOU THINK!!!!!
Thanks in advance.
Diagnosed 4/07 with Crohn's after hospital stay. Meds: Asacol, Librax, Azathioprine, Prednisone, Prozac, Buspar, and Xanax and percocet PRN.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 8/31/2007 3:57 PM (GMT -7)   
Pill cam
Forum Moderator 
I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...

Veteran Member

Date Joined Nov 2005
Total Posts : 722
   Posted 8/31/2007 5:47 PM (GMT -7)   
I agree with Navy about the pill cam and also think you should get a 2nd opinion.
I was diagnosed in Boston but when I moved back home to upstate NY, 3 different Drs. told me I did not have CD. One of the Drs. even diagnosed me and undiagnosed me within a year. He took me off of all my meds and I got rectal abscesses every 4-6 weeks. I am finally taking remicade-not sure if it's helping yet but I am hopeful.
Best of luck and keep us posted! :-)
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 8/31/2007 10:09 PM (GMT -7)   
Get a pill cam and a second opinion. My GI did a colonospopy and pill cam on me, discovered I had crohns disease in ilieum and esophagus ...didn't bother to tell me....sent the results to my family doctor. Apparently after discussing it with each other, and knowing my personal history and difficulties at the time, they agreed that it would be best NOT to tell me I had crohns disease. Put me on med, but failing to have a pharmacist that relayed anything, and no computer to check things out, I took their word for it and thought I was going absolutely coo-coo. .....this had to be all in my head...after all , according to them I did tend to worry about everything etc.
Well, it was 2 years later, in a major, major flare that I ended up back in the GI's office and he says. "By the way, I diagnosed with crohns disease 2 years've you been?" I could have chocked him. I guess, knowing that all hell was breaking loose in my life at the time, they figured they were doing me a favor....their intentions may have been well-meaning....but I haven't been able to take a doctor's word for anything since then.

Get a second, and third opinion if you have your gut instinct on this one...pardon the pun!'
Good and prayers.
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

Regular Member

Date Joined Jun 2007
Total Posts : 210
   Posted 9/1/2007 1:51 AM (GMT -7)   
Even if I don't know you I hope it's ok if I answer you. I have got Crohns in my upper R og L quadrant, my pain is also more around the umbilical area and upper R-L quadrant. 5 % of all Crohnies got their disease in the duodenal and jejunal area, which causes pain like yours. I have a narrowing in the upper intestines, which leads to pain, cramps and nausea. Now and then I got partial obstructions which makes me vomit and then I get a severe pain. Since I have this narrowing the hospital won't let me do the pill cam examination, but they gave me an x-ray with barium contrast instead. This examination was nothing to worry about. When it comes to food I have to avoid fibers that's in some fruits and vegetables. If I eat this food, I will have pain and swelling for the entire afternoon. If I avoid stuff like this, I feel much better. I am now on prednisone since the middle of july, and my pain has dissapeared. But of course I react if I eat veg's and fruits, as usual with gaz, swelling and bloating. I have also had a colonoscopy. Nothing found there.
The best of luck
From Ingrid

Post Edited (Skjura) : 9/1/2007 6:39:45 AM (GMT-6)

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 9/1/2007 2:33 AM (GMT -7)   
Hi, Nana CC.  I agree with everyone here.  I would go for the pill cam.  (Capsule Endoscopy.)  It will inspect places that a traditional colonoscopy can't reach.  Is it also possible that the meds you are on are "healing" your current Crohn's condition and looks better than your last colo?  I would also get a second opinion.  Or, request an appointment sooner with your current GI.  I know the nurse gave you the info, but I would get all the details from your doctor, along with a detailed comparision of both colonoscopies.  All the best to you, Julie

Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12.5mg a day
Imuran just increased to 50mg
Acidophilus daily
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/1/2007 4:18 AM (GMT -7)   
Hi Nana so glad to hear your scope was good if you need the small intestine checked go for it. You could have narrowing that still causes you some problems but it is great that at least your large intestine looks good. It could be going off the pred causes you symn. I know as I lower I get a little D for a few days but seem to regulate a little the Rem was doubbled and that made a difference air flowing good and good BM's.I was DX with CD in both large and small so for me one test would not tell me everything that is going on inside there.So glad your change of thinking is doing you some good and let us know if we can help. lol gail

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 9/1/2007 8:15 AM (GMT -7)   
don't feel crazy and I know it is hard not to. I have been diagnosed and undiagnosed and now am waiting for other test results, and my story is not uncommon. I think different docs and tests and days show different things, so our path is often a rocky one. when I am feeling sane I am able to not worry about "what is wrong," but focus on symptoms and quality of life, as I may never know what is wrong. keep educating yourself and don't panic. big hug, YP
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and with pain, but doing ok.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 9/2/2007 10:40 AM (GMT -7)   
If you feel better on the meds and you are not having side effects then I don't see why you can't stay on them. As far as coming off pred, I have never taken it but when I came off my entocort my withdrawal including severe stomach pain and D which passed after a few days and led me to remission. So your D could be from a withdrawal. I hate how doctors undiagnose us all the time. I like to think that things look better b/c the meds are working. Im sorry you are in this situation. The bottom line is, it isn't your diagnosis that matters, but how you feel every day.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 9/2/2007 12:28 PM (GMT -7)   
Yes, crohns can affect the entire GI tract from the mouth to the anus and more then one area at a time can be affected as well...if your colonoscopy showed clear then tests for the rest of your GI tract need to be done, including the usual, blood and stool samples.

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

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 9/5/2007 9:34 AM (GMT -7)   
You can also ask for a Prometheus test to see if you have the markers for IBD.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (26) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

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