Surgeon said no Crohns

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 2/9/2009 4:13 PM (GMT -7)   
Hi. Now that I've had my resection done just over a week ago my surgeon said that I now have NO Crohns, does he mean no inflamation?
He also told me which I don't like to much is to stop all my medication. He only suggested to tapper from 5mg of pred over a 5 week period.
 
Does this seem the normal after a resection, I mean stopping all maintenance meds?
 
Thanks
Medication at present 6mg Budesnoide, 200mg Azathioprine, 3000mg Pentasa.
 
Operation due 28th Jan due to narrowing stricture.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/9/2009 5:02 PM (GMT -7)   
Well, there are some who get away w/no maintenance meds after surgery. I was one. But not by any real choice. My resection was in 1978 and the only med they offered me was asulfidine which made me more sick than the Crohn's had so I went basically untreated when my Crohn's was active which is why I ended up having a resection so soon after my first, continuous flare started.
 
Given today's meds and how well I have responded to the mildest (mesalamine) as well as Imuran  there is no way I would go w/o a maintenance med after a resection today. Go w/what you are comfortable with. If your gastro won't script a maintenance med, ask your family doctor to script it if that will make you feel more confident. Dr May in the old CCFA Ask the Specialist forum always told us the med and dose that got us into remission was the med and dose to keep us in remission.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/9/2009 6:19 PM (GMT -7)   
You should be having a conversation with your GI about maintenance meds, not your surgeon. Your surgeon is an expert in surgery, not in medicine.

As for you having no crohn's, I'm not sure what it's appropriate to say about that. What do you think? Why do you think he said it? How did you feel when you heard that? Were you relieved? Excited? Happy? Hopeful? Confused? Upset? Anxious?
Belleenstein:

30+ years living with Crohn's.


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/9/2009 7:08 PM (GMT -7)   
Well, I guess first of all, you will ALWAYS have Crohns, it does not go away, and never will until we find a cure.  Your symtoms may subside but its always lurking around in there.  What your surgeon probably ment is that he took out the disease section, and that you now have no active Crohns.  I personally am not on any maintenance meds because none have worked for me so far, and my surgeon took me off Humira because he feels Im way too long for the long term side effects, which I agree with and plus it wasnt doing anything for me anyways.  I would have to say tho a maintenance med/s are a must for most people, if they can find one that works.  I have no inflamation or active crohns but Im still in the bathroom 10-20 times a day, and I still get pain after eating...neither of my resections have done anything to help me.  But Id say to talk to your GI doctor and see what he says, most dont tell you to get off your meds.
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly)
 

aquagirl900
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 2/9/2009 11:16 PM (GMT -7)   
After my resection, I had microscoping inflammation and my doc put me on Humira...I think I will be going off of it soon because I still go to the bathroom 10 times a day and have some pain...and the injection site reactions are getting really really bad...I don't know what my doc will do after the Humira...I spent 3 years on Pentasa and it didn't really do much for me...

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 2/10/2009 4:27 AM (GMT -7)   
When I was diganosed my GI told me I had to take Salofalk, that I'd be all cured in a matter of months and that Crohn's could return in like 10 years time but that it probably wasn't going to. mad

Needless to say that I should've switched my doctor back then. There are a lot of GIs that don't know what they're talking about. And surgeons know even less. So I'd have to agree with the others, you should talk to your GI.

As far as the stopping your medication part goes I don't know what I'd do. Maybe you could try it and see how you feel. Honestly, it would be great if you didn't have to take medications but you have to be really careful because even if you feel good your CD could be active. So maybe try staying off meds and do check-ups often?

But you know what? You have to see how your body's going to react on lowering your steroids dose. No one can guarantee that you won't be feeling worse when lowering your dose. A surgery is a shock for a "healthy" body and how could it not then be even worse for us Crohnies?

Hope everything goes well!
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 2/10/2009 5:01 AM (GMT -7)   
My GI doctor told me that I will still be on my Asacol as a preventitive after my surgery. My surgeon also said that she would take out all of the active Crohns and that possibly I may not have the Crohns come back with mant. meds.
I'm completely alright with taking meds as long as the Crohns stays away.
My neighbor had a resection 15 years ago and she is not taking any meds and is doing really well. She said that her doctor doesn't agree with her, but it is her decision.
What I'm saying is that what might work for someone else might not work for you.
It's your decision.
Good luck!

Good Days
Regular Member


Date Joined Oct 2008
Total Posts : 146
   Posted 2/10/2009 6:13 AM (GMT -7)   
My surgeon who is great also told me after bowel resection that I no longer had chrons. What he meant was that he had removed all the inflamed areas. He did not mean it would not come back and certainly did not tell me to no longer take my meds. My GI dr has me on mainenance drugs to prevent a flare up. Chrons is genetic and that gene does not go away. Also my bowel resection was in June of 07 and in Oct 07 I had a colonoscopy and the GI dr. told me the chrons was back (though not badly) around the resection site. He also told me he had never seen it when it did show back up there. However, with maintenance drug I am better and Just in Jan had another colonoscopy which shows only mild chrons. Take the adivce of your GI dr.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/10/2009 8:22 AM (GMT -7)   
I am a definite firm believer in maintainence meds. After my first resection my GI at the time (now fired) said I could stop my Asacol. Well I did and wound up getting sick again. So I went back on the Asacol and everything is good now.

Also I once enjoyed a 20 year remission med free, but would I do it again?? Heck, NO!!! My 20 year remission ended with an emergency resection. While you are busy getting on with your life, the Crohns is still in there microscopically doing its damage. So do talk to your GI and stay on some type of maintainence med. As I said I take Asacol and its one of the mildest meds out there.

Good luck,
Gail *Nanners*
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"*

spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 2/10/2009 9:23 AM (GMT -7)   
Thanks for all your replies.
I thought it was strange when the surgeon told me to stop all my medication, I was that unsure I asked him again the following morning.
I said to him about continuing with maintenance meds and he replied saying , erm good question........ I'm 99% sure that your GI will stop your Crohn's medication due to the fact you don't have any more Crohn's. I will see you in 6 weeks time with your GI.

I really thought he wouldn't of said that because he works along side my GI every week in a very reputable hospital here in the UK which apparently my GI specialises in Crohns and Colitis. Anyway, Today after reading your views I carried on taking Pentasa, stopped the Azathiroprine. If My GI does confirm to stop taking meds I will go and see my GP.

Thanks all.
5mg Pred tappering over a 5 week period.
 
Resection 28th Jan 2008


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/10/2009 11:52 AM (GMT -7)   
When your doc said "no crohn's" he means there is no CD activity, inflammation, polyps...he didn't mean you were cured, just that there is no crohn's showing anywhere since your resection...the only downside with CD is that it's known as the "cutting away disease" because after surgery usually at some point the CD will affect another part(s) of your GI tract, that siad, it could take months or even yrs, it's hard to predict CD for each person.

As far as I know, taking meds when there's "no crohn's" won't necessarily stop CD from returning...it's also important to remember that because CD can affect any part of the GI tract that some meds are targeted to reach the colon while others the small intestine. You need to talk to your doc about this more.

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


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/11/2009 2:05 PM (GMT -7)   
Saying to someone after surgery that "there is no crohn's" is about providing the patient with a psychological boost. Sort of the same way many physicians treat cancer patients. How many times have you heard that "they got it all" only to see the patient have a recurrence a year or so later. The key is, that your outlook can affect your recovery, so I think surgeons paint a deliberately rosy, if vague picture.

I remember after my first surgery that my surgeon told me they had got it all. Months later, back in hospital, I raised this with a medical internist and he just smiled and confirmed what I always in my gut knew -- there is no such thing as getting it all. Just because they can't see it doesn't mean it isn't there microscopically.

I've been told twice by two different surgeons that "they cut it all out". In one case, all my meds were stopped by the surgeon. Less than three weeks later, I was in serious adrenal failure and my disease was again active. When I arrived for an emergency appointment with my GI he took one look at me and asked, "what have they done to you now?" Back on IV steroids, flagyl and azathioprine to try and get it settled down again.
Belleenstein:

30+ years living with Crohn's.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 6:25 PM (GMT -7)
There are a total of 2,735,608 posts in 301,319 threads.
View Active Threads


Who's Online
This forum has 151422 registered members. Please welcome our newest member, Gabor88.
281 Guest(s), 17 Registered Member(s) are currently online.  Details
Psilociraptor, bluelyme, PDL17, mikeb2308, Rikky1, Park12, Derwood, Pratoman, NiceCupOfTea, Lynnwood, Dyna1, gfields, aloha234, k07, Michael165, Tall Allen, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer