Had surgery 3 weeks ago and already in another flare?

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JSG
Regular Member


Date Joined May 2005
Total Posts : 24
   Posted 10/21/2007 10:34 AM (GMT -7)   
So I was on remicade and 6mp for years and years.  My crohns was completely controlled with that.  Seven months ago I stopped the 6mp to try to get pregnant.  After going off the 6mp I noticed that my symptoms were coming back much sooner and I was having a hard time making it to my remicade appt.  Because I was already on the highest remicade dose my doctor wanted me to consider switching to humira.  I never got a chance to make the choice.  A couple weeks later I was in the hospital with an abscess in my intestines.  I had a resection and although the surgeon was pretty sure he took out all of the diseased intestine as well, my GI wanted to do a colonoscopy and SBFT a month after surgery to make sure.  Well a week after surgery I started getting welts on my legs and sores in my mouth, then hemrrhoids came back, and now....3 weeks later my joint pain is so terrible I can only hobble around in pain.  My colonoscopy is scheduled for Oct. 31, the SBFT is a few days later, and my appt to see the GI to discuss the results and whether I'll go on meds is Nov. 5.  I'm miserable.  The only thing that seems to be controlled are my stools, but it's still really painful when I go no. 2 because of the painful rear end.  I guess I'm going to call my GI tomorrow and let him know what is going on.  I just don't know why this is happening?  Is it possible for so many symptoms to come back so shortly after a resection?  I haven't been on any crohns meds while healing from surgery.  Is it possible to have joint pain and welts on the legs without having active disease?  I'm just so depressed.  I had really hoped that I might be able to go off all meds for awhile after surgery and it doesn't look like that's going to happen.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/21/2007 11:29 AM (GMT -7)   
I wonder if any of these could be from getting off all the drugs. I know when I quit taking Remicade/6MP I had horrendous joint pain which was caused by serum sickness (to the Remicade) that the 6MP had kept in check up until then. If so, it will take a while for the pain to go away.

I hope it's not the CD returning, at least if it's the Remicade you know the symptoms will go away.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/21/2007 11:54 AM (GMT -7)   
All I can tell you is my experience. I had a CD flare within 6 weeks of one of my resections. I swear it was because there was some microscopic diseased sections left. Back in the dim dark ages of this disease, when my mother was first diagnosed, 1965, they would take out feet of intestine, to make sure that they got all of the diseased section. Of course, now they know more, and that taking out more intestine causes problems down the road, and that most likely we will need more surgery and every inch they can save now is important to the well being of the patient in the long run.

You should call your doctor and see if you can move your appointment up or at least get a phone call back to discuss your concerns. It sounds like you have something going on, and you don't want to leave it too long.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Robyn1973
Regular Member


Date Joined Nov 2005
Total Posts : 30
   Posted 10/21/2007 12:36 PM (GMT -7)   
I wonder if surgery isn't half of our problem. I didn't have crohn's until I had a laparascopic tubal ligation. 2 weeks after that my symptoms started, but it wasn't bad yet. Occasional abd pain, chronic constipation, fever, joint pains, and minimally elevated sed rate. After 6 month feeling icky, a CT showed that my intestines bunched up. (Intussception) I had surgery for this, still not diagnosed as Crohn's. In surgery fixed the intussception and incidently found my ileocolic junction was inflamed. They removed the section & biopsy revealed Crohn's. After surgery my Crohn's came on full force. My sed rate skyrocketed, my crp jumped. I had worse fevers, worse pains and began fistulizing. I regret ever having my tubal. I think I might have gone thru life without Crohn's rearing its ugly head. Someone else I know never had a problem until she had a hysterectomy. Just a theory.
Diagnosed 6/2005.  Ileocolic resection.  Tried Asacol, Pentasa, & Imuran.  Crohn's fistulized, used Cipro & Flagyl (w/side effect of neuropathy).  Started Remicade 8/2005 & doing much better.  Upped to every 6 weeks due to breakthrough symptoms at 7 weeks.  Possible flareup from flu shot 11/06.  Occasional gallbladder issues. 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/21/2007 1:15 PM (GMT -7)   
Hi Sorry to hear you are not doing so good. I have just been put back on pred. and I got some leg pain yesterday so I grapped a crutch and used that till it stopped paining and then I was ok again. I find if I do this I don't have to take tynelol for pain I rarely take pain meds. I know it is hard to go back on meds but I looked at what I went threw last year and decided to take the pred. on 20mgs. I do feel better the last couple of days but still getting loads of noise and gurgling. Seems it sometimes takes some time to get things straitened out. Hang in there things will get better. lol gail

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 10/21/2007 5:16 PM (GMT -7)   
Yes its possible to flare after surgery. I had an emergency resection while in Mexico on vacation. I had a complete blockage along with an abscess. They removed 12 inches of the small bowel. Of course they fixed the immediate problem, but I continued to be really sick after surgery to the point my gi put me on Imuran & emicade. I was on it for 3 1/2 yrs. Now, I am on Entocort, June was a year of being on it.
I hope you get to feeling better soon.

Call your dr do not wait.......Susie


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 10/21/2007 6:20 PM (GMT -7)   

within 6 weeks of my last resection, i had crohn's again. Months later, a scope showed a few inches of recurring disease with partial obstruction.

If meds/surgery aren't helping, you might want to consider trying the maker's diet and probiotics? It's done more for me than meds/surgery have.

best wishes


JSG
Regular Member


Date Joined May 2005
Total Posts : 24
   Posted 10/21/2007 7:58 PM (GMT -7)   
Thanks so much for the replys.  I had considered just trying to wait it out and not call him.  I'm one of those people that hate to be a pain.  But after all of your replys urging me to call and not wait, I will call tomorrow morning.  I sure hope it's just a reaction from going off of the remicade, but I'm not so sure it is.  It feels exactly the same as when I'm in a flare. 

Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 10/21/2007 10:08 PM (GMT -7)   
There is always a good chance some diseased area was left behind. Then there is the possibility that the meds were controlling areas of inflammation which became reactivated when you stopped the meds. I am very sorry you have to go through this and hope that you can start Humira or something else to calm your symptoms.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/22/2007 5:03 AM (GMT -7)   
JSG said...
Thanks so much for the replys.  I had considered just trying to wait it out and not call him.  I'm one of those people that hate to be a pain.  But after all of your replys urging me to call and not wait, I will call tomorrow morning.  I sure hope it's just a reaction from going off of the remicade, but I'm not so sure it is.  It feels exactly the same as when I'm in a flare. 
 
Does your joint pain move from one joint to another?  Did it start with one joint then another, and moves from one day to the next? 
I still think you should call your doctor, but I hope it's the Remicade.  A Prometheus (Infliximab HACA) showing your antibody levels could help you decide, but only time will tell for sure, your symptoms should dissipate over time (it took 4 months for me). 
Good luck at the doctors, but make sure you bring this up because so many doctors aren't aware of what some of the side effects of Remicad are, I had to go 4 hours away to a specialist to get my diagnosis.
 


Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


JSG
Regular Member


Date Joined May 2005
Total Posts : 24
   Posted 10/22/2007 2:29 PM (GMT -7)   

I called this morning and because my dr was doing scopes today I couldn't get in to see him, but I did see a nurse practioner.  She looked at the horrible sores on my legs and wrote down everything I told her and then she went and talked to him.  He said he was disappointed to hear it because he's sure now that there is active disease somewhere in me.  He still wants to do the scope and SBFT because he wants to get me on meds that will be friendly for family planning.  In the meantime, to get me to next week he's put me on a low dose of pred.  I hate pred!  I just feel like crying. 

 

Judy...my joint pain travels, but it has always traveled on me.  I didn't see your message today before I left, but I'll make sure to mention remicade withdrawls to him the next time I see him.  Well see how the pred helps in the meantime. 

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