When to report changes

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Veteran Member

Date Joined Jan 2004
Total Posts : 598
   Posted 10/16/2007 8:11 AM (GMT -6)   
The last time I saw the gi NP she said to be sure to report any "changes" in my condition and not to let it go.  I'm not sure what this means. Anything significant that is a change is obvious i.e. bleeding when there was never any before.  I reported that I was doing great gut wise (I made it clear I still had problems elsewhere and she made it clear that was not her dept.) but just after that I had a significant stress in my life which I have gotten a handle on. However, I think it did affect my gut to a degree. Is this a "flare?" I have no idea. Not sure if I should call or not  She didn't say what they would do. I've been dealing with this on my own for so long and ignoring most (never having anything really alarming) so this is so foreign to me. No one has been interested before. I would also hate to think I'm missing out on some additional treatment that might help by not calling.  I also don't want to get scolded in Dec when I see her again. Anyone in this situation?   
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 10/16/2007 1:43 PM (GMT -6)   
I am. I debated back and forth about contacting my doctor. I've never had bleeding, I don't lose weight, I do have "d" but it has been better lately, but I do have fistulizing Crohn's. My tailbone area has been extremely painful for about 6-8 weeks and getting progressively worse. Now it's my whole rear end. Even had a x-ray but nothing showed up. Started running a slight fever. 99.2-99.8. My normal temp is 97.8. Do I call or don't I? Got my answer when I got a sudden sharp pain in my gut. I'm scheduled for a CT scan on Thursday and a GI appointment Friday. I guess it is better to be safe then sorry.

My suggestion is to call and give them your symptoms. Let them make the decision if they need to see you. Now if I'd only take my own advice.
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

Regular Member

Date Joined Jul 2006
Total Posts : 144
   Posted 10/16/2007 3:58 PM (GMT -6)   


i have the exact same problem, i too have no bleeding or weight loss, i do have the diaherra though alot.  I have had the worse time with fistula's and i have a permament c-ton in.  After my last surgery everything was fine for about 2 months until i started having pain down there.  It has slowly gotten worse and i also have the tailbone pain.  I did get c-scan's and they found nothing of course and it's not infected they say.  I am still looking for anwsers for the pain i have and it's very frustating. 


as for root,

If something is wrong and you are feeling worse I would call, at the least, and leave a message for your doc or make an appointment.  I always try to minimize myself and brush off pain and worsening symptoms but one time i did that i had an abcess.  so the best thing is, if you think something is wrong call.

26 years old
dx with crohn's at 23
Surgery for fistulas in 2006 and 2007

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/16/2007 6:22 PM (GMT -6)   
Hi I think what your Dr. means is changes like weight lost, more pain, bleeding , bowel habit changes that are not good, things like that. What changes have you had that are different from the last time she seen you ? lol gail
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