Recurrence of CD after surgery

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Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 2/12/2009 10:33 PM (GMT -7)   
I'm trying to get a handle on the rates of recurrence after surgery. This is what I've found. Can anyone shed some light on this?

CD RECURRENCE
CD recurs in 50% of people within 5 years of surgery, with no meds. I'm trying to find good studies on whether taking meds reduces this, but I think they do.

http://www.ccfa.org/info/surgery/surgerycd
http://www.wjgnet.com/1007-9327/11/3971.pdf
http://www.ncbi.nlm.nih.gov/pubmed/15362027


SURGICAL RECURRENCE
30% according to the link below (25% according to ccfa site link above) of surgical patients will need another surgery in their lifetime. Optimistic spin: Odds are that most people who have surgery will only have 1 surgery.

http://www.everydayhealth.com/crohns-disease/webcasts/can-elective-surgery-help-manage-your-crohns-transcript-1.aspx

But then this site says that 70% of those who have one surgery will need at least one subsequent surgery.

http://www.medscape.com/viewarticle/588009

Confusing!!!!!
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 2/12/2009 10:44 PM (GMT -7)   
If you continue to avoid gluten and dairy, I wonder if that wouldn't help your chances of staying in remission? Or get crazy and go back on SCD. Sometimes when people have surgery, and get to feeling better than they have in a long time, they let the healthy eating and whatnot slide. So long as you keep on your toes and maintain a healthy lifestyle (and take maintenance meds of some sort), it seems like it would really help your chances of staying in remission. Just a thought though, I have nothing to back my theory up smilewinkgrin.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/13/2009 7:34 AM (GMT -7)   
Well I have had 2 resections myself. The first one was emergency and the second was 3 years later because I had developed a stricture at the reconnection site. I think for the most part folks do really well after a resection. Its been 4 years since my last and although I am dealing with the changes the surgeries created I am in remission and have been for awhile. Hope that helps some.

You have to also remember that many folks who are doing well are not posting here anymore, they have moved on and have gotten on with their lives.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 2/13/2009 9:13 AM (GMT -7)   
Nanners what changes happened after the last surgery?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/13/2009 1:26 PM (GMT -7)   
My diet is much more strict. Things that never bothered me before, bother me now. I live on a low residue diet all the time now.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/13/2009 1:30 PM (GMT -7)   
And I guess that's from strictures, rather than inflammation? How can you tell from the two?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/15/2009 8:08 PM (GMT -7)   
From what I've read so far, the best thing to do is quit smoking, but i don't smoke....
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/15/2009 8:32 PM (GMT -7)   
Yes, smoking is hell on crohn's. But if you have ulcerative colitis, it can help it. When UC people try to quit smoking, they have to be very careful about a flare up. Weirdness.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/15/2009 8:57 PM (GMT -7)   
Njmom, the ccfa says the relapse rate of CD after surgery is 50% and half of these will need another surgery in their lifetime, so that's where I get 25% from.

http://www.ccfa.org/info/surgery/surgerycd

This surgeon says it's slightly higher, 30%, on page 5.

http://www.everydayhealth.com/crohns-disease/webcasts/can-elective-surgery-help-manage-your-crohns-transcript-1.aspx

Do you have info that conflicts with the CCFA and this surgeon? Please let me know! Thanks for helping me out.

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/15/2009 9:22 PM (GMT -7)   

Hi Rider Fan,

The links you provided are very useful. But they don't confirm that "30% according to the link below (25% according to ccfa site link above) of surgical patients will need another surgery in their lifetime. Optimistic spin: Odds are that most people who have surgery will only have 1 surgery."

Actually, the CCFA site said, as you noted, that 50% of patients will have a recurrence within five years. Then it says "about" half of those with recurrent symptoms will have a second surgery. It doesn't say whether it is talking about those with recurrent symptoms in five years, or six, seven, etc., or a lifetime. It also doesn't identify what percentage of patients have a recurrence in 6 years, 7 years, etc...presumably, these stats are higher than 50%. Because it is unclear about the lifetime chance of a second surgery, the 30% stat is not supported...this seems to be only the best case scenario, looking at only five years out from the first surgery.   

http://www.wjgnet.com/1007-9327/11/3971.pdf - This link says, "Post-operative recurrence rates defined by clinical symptoms are 17-55% at 5 years, 32-76% at 10 years and 72-73% at 20 years. The rates of recurrence requiring re-operation are 11-32% at 5 years, 20-44% at 10 years, and 36-55% at 20 years." Aside from the fact that these stats are all over the place (32-76%?? at 10 years), it concludes, "Thus, the re-operation rate tends to steadily increase with time, reaching approximately 50% at 20 years after surgery."  50%, not 30%.

http://www.ncbi.nlm.nih.gov/pubmed/15362027 - This link doesn't talk about second surgeries, but does say post-op disease recurrence can range between 34% and 70% in just 24 months.

There are is a lot of great info in these links -- thanks! But the 30% lifetime stat you came up with is just not supported by these links. Furthermore, none of these articles talk about third, fourth, or fifth (and more) surgeries. 

Post Edited (njmom) : 2/15/2009 9:25:20 PM (GMT-7)


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 2/15/2009 9:34 PM (GMT -7)   
That's very helpful njmom, I've been looking for those stats all over the place.

Right now I think I'd take a 50% chance of needing another surgery when I'm 53. Also, let's assume there will be some better options in the next 20 years, medically and surgically.

On the other hand, 50% chance of CD recurrence within 2 years is significantly worse than the 50% in 5 years as per CCFA. If my symptoms come back mildly like they had been for the first 8 years post dx I could handle it....

So confused...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/15/2009 9:52 PM (GMT -7)   
This is interesting. The average operative recurrence for the non-perforating patients was 13 years and 1.7 years for the perforating disease group. My CD is non-perforating.

I wonder how much this difference influences the numbers in the 2 links above?

Njmom, have you read of such a large difference in re-surgery rates before? This is quite a difference!

http://www.springerlink.com/content/l1kn6t38545v688j/
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/15/2009 10:29 PM (GMT -7)   
This study was mentioned in http://www.wjgnet.com/1007-9327/11/3971.pdf - which then went on to say that other studies found no difference in recurrence for perforating vs non.
 
It concluded by saying, "Evidence for differing the recurrence rates in perforating and non-perforating diseases is inconclusive."

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/15/2009 10:52 PM (GMT -7)   
oh
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 2/15/2009 11:15 PM (GMT -7)   
I was diagnosed when I was 32, but had symptoms for several years. I had a surgery 9 months after diagnosis. A colonoscopy showed that the disease was active again 11 months later. Its been another 6 months, meds aren't really helping and my symptoms are worsening. My doc is already talking about needing another surgery. He told me that the earlier you have to have surgery, the more aggressive the disease is, that is what factors into whether or not you need another surgery. I think statistics can be very useful, but when you get right down to it, your chance of recurrence is going to be dependent on so many things that what is 'normal' may or may not have anything to do with you. It's frustrating, this disease. It just never seems to be very logical!
diagnosed w/Crohn's 11/06. 35f with 2 boys and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 2/16/2009 4:56 AM (GMT -7)   
Well I'm hoping that I won't need another surgery.
My neighbor had surgery about 14 years ago and has been disease free every since. Oh and she is not on any maint. meds, just probiotics.

Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 2/16/2009 6:20 PM (GMT -7)   
Well I have a colonoscopy scheduled for mid MArch....First in 5 years. I have a feeling that the diseased part of my colon is dead or nead dead and no longer functioning as I have pretty much been not so great for the past year and 4 months...My remission periods use to last 2 to 3 years since 01 and before that first remission period was 6 years.

I have had Crohns since I was 14 years old...Im 29 now...no surgeries as of yet...I think that is a loooonggg time to just have done tier 1 meds. I did try 6mp for about 8 months but relpased in Sept of 08 so figured there is no use in continuing that.

I am going to talk to my doc about surgery this year. I am not afraid of it at all...the hospital stay is 3 to 4 days tops, and your home and off work for about 1 to 2 weeks tops...that is nothing...I mean we are all use to PAIN on going for months at a time if not years for some of you. I am ready to take the plunge and get some good life quality back. Plus my diseased section is only about 4 inches at best...Im like take that peice of crap and throw it out the window! LOL reconnect the good ends and let me go on....SInce my disease seems to be mild and very slow progressing Im not worried about surgery reoccurence, plus I have learned so much more about diet and nutrition and the TOXCICITY of Refined Sugar on our systems....

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/16/2009 6:23 PM (GMT -7)   
Sounds good Doc. How is the SCD going?

From what I've read it takes about 4-6 weeks to get back to work....
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Panayo
Regular Member


Date Joined Jan 2003
Total Posts : 246
   Posted 2/16/2009 7:28 PM (GMT -7)   

Rider Fan -

     The thing to remember is that surgery does not cure Crohn's, It only removes the affected part of your intestines.   The best way to prevent "hopefully" further surgery is to get on a maintenance schedule and follow it faithfully.

     I've gone a couple of years, 5 years, seven years even as long as nine years without surgery but in my case it always came back, some of those times were without any drugs but I finally learned my lesson.  Twenty one of two years ago I decided to go on maintenance drugs forever, never had another problem to speak of.

     I've had severe Crohn's over 53 years now, 9 surgeries and never let any of it slow me down.  I never read or listen to stats on what can happen, when, how and why cause it just doesn't happen that way, everybody is different.  If you want to spend time researching, research your disease, how and why things happen, what can we do to prevent them from happening.  The more you know about Crohn's the better off you will be.  In my case, I learned how to control inflammation of the intestines and have lived the good life since.

     I eat anything I want, Drink anything I want, I even smoke and now I'm even thinking about getting marrried again, and I'm only 81 years old since 2/6/09.  Crohn's never stood a chance with me.

     Respectfully


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/16/2009 8:25 PM (GMT -7)   
Hi Panayo. Thanks for your thoughts. 6MP worked well for 8 years, I went off it to father a child. I will not stop taking maintenance drugs again.

I know surgery isn't a cure, but if you read my thread on Humira or Surgery, I think you'll agree that I can't go on like this.

thanks again.
Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.

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