Whats remission feel like? Will I always be tender?

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QueenCityCrohnie
New Member


Date Joined May 2010
Total Posts : 16
   Posted 7/22/2010 6:07 AM (GMT -7)   
I visited my doctor a few weeks ago, Ive been on Entocort for a few months and moving back to a Pentasa or Asacol. I have normal bowel movements, and no blood. D is pretty rare for me. My doctor says I am keeping my Crohns under control however my lower right (area of ileum where my Crohns is) is tender and has been tender with gurgling. He didnt seem to think too much of this. Even in remission am I always going to be tender here? Last night my girlfriends small dog just jumped into my lap and put one of his feet on the spot and it felt... not good at all :). Its frustrating always guarding the area from getting bumped or touched and hoping it will not always be like this.
Thanks

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/22/2010 7:36 AM (GMT -7)   
The gurgling sounds like a stricture (narrowing due to inflammation and/or scar tissue) and the tenderness could indicate active Crohn's. My daughter had no tenderness after a few months of Entocort - but she did have some gurgling, yet the doctor said she could taper of Entocort, anyway. She landed in the hospital.
 
You are probably not in remission...Entocort hasn't been proven to put anybody in full remission (meaning no symptoms whatsoever plus a colonoscopy to show no signs of Crohn's internally). So it makes sense to try Pentasa or Asacol, or other meds.
 
After my daughter landed in the hospital, she went back on Entocort and stayed on it for years. It took about five months for her tenderness to go away and seven months for her gurgling to go away. A cat scan done before she landed in the hospital showed she had a stricture, but years later, another cat scan showed the stricture had disappeared. This was thanks to Entocort and diet.
 
BUT a colonoscopy done last year showed she still had active inflammation - a couple of ulcers in the small intestine. So Entocort had not finished the job - and, given time, the continuing Crohn's inflammation might bring back another stricture.
  
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 


QueenCityCrohnie
New Member


Date Joined May 2010
Total Posts : 16
   Posted 7/22/2010 8:22 AM (GMT -7)   
Did she just taper off the Entocort too fast without a maintenance drug added and the pain increased? Or what prompted the hospital visit?

tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 7/22/2010 9:48 AM (GMT -7)   
My Crohns is also in my Ileum. I was on Entecort for awhile and my symptoms did not fully go away. I had just enough relief to feel almost normal. (I felt pretty good but with some pain on and off and still tender) Since I was so bad off before the Entecort my doc and I thought we were making progress. One month later the Entocort stopped working. We added Pentasa. No relief. At that point my doc was convinced the meds could not have stoped working so quick after working well for a month and thought I might have an abcess or other complication that was causing such pain. After a CTScan he found out he was right. I was in surgery 3 weeks later. After my resection I went in to real remmision, no inflammation and no indication of crohns and had no pain or tenderness whatsoever for a year. I am flaring very bad again now and have just started Remicade. It is very possible that the Entecort is working just good enough to relief some syptoms but not well enough to put you in remmission. (like MJMOM said) Hope Pentasa works well for you and you obtain real remmission.

By the way my old GI called my lack of sysptoms while on Entecort remmission but my new doc does not reffer to being in remmission untill all inflamation and internal signs of Crohns are gone.
26/year old Female- Crohns active since June of 08- DXed (finally!) March 09- Resection June 09- remmission for 1 year- flaring now - Starting Remicade on 7/15/10- Scared again after a year of denying I was sick.......... Thankful I have a good support system behind me.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/22/2010 10:23 AM (GMT -7)   
No, she didn't taper too fast. She followed a slow taper schedule:
 
first, 4 weeks at 9 mg daily
then, 3 weeks at 6 mg daily
then, 4 weeks at 3 mg daily
then, 3 mg every other day (one day on, one day off Entocort) 
 
When she got down to the every other day schedule, she went into full flare on the third of the "off" days and landed in the ER.
 
That was in July 2006 and the good news is that is the last time she flared. We weren't taking any chances, so she stayed on Entocort for years.
 
What scared us most was that when she went back on the Entocort, it took longer for it to work for her. This meant that if she went off it again, and then tried to go back on, it might now work at all.
 
So she stayed on Entocort for years, most of the time, on just one pill...combined with diet changes.

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/22/2010 6:08 PM (GMT -7)   
My experience with Entercort is that it helps a lot and makes me feel better but won't actually keep me from having an obstruction if it's going to happen anyway. I think it's a great drug (for me) but I did experience some side effects (more annoying than harmful).

QueenCityCrohnie
New Member


Date Joined May 2010
Total Posts : 16
   Posted 7/23/2010 10:58 AM (GMT -7)   
What kind of side effects did you get from it out of curiousity?
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