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Wed, January 27, 2016 12:19 AM

Ibe been thru all the treatments for my colitis still no improvement. Currently doing remicade infusions done 2 so far. Not sure how much it has helped. I have spoken to a surgeon about having my entire colon removed...anyone had this done before? Thoughts? Should i keep with remicade to see if that helps or is the surgery really that much better. Thanks for any advice

FPO mavman41
Joined Apr 23, 2015

Thu, July 06, 2017 9:11 PM

Reply posted for mavman41.

I was diagnosed with Crohns in 2004. Over the course of years, I tried multiple medications, the final one was twice a month injections of Humeria. Eventually it was a joint decision between myself and the Doctor to have a total colectomy preformed in August of 2016.   The list of medications was long with little, if no benefit seen medically and surely none felt. So as much as I wanted to avoid the surgery.... I went ahead in an effort to retake some measure of control over my bowels, bowel movements, life, and hopefully have less pain.

As I approach one year now, I have SO MUCH LESS PAIN.  Don't get me wrong, for there is a big adjustment to have stoma/ostomy, yet I'm only take one medication now (Humeria) to keep my disease under control (from spreading). I used to take 11 different medications just for the crohns and it's symptoms. 

I think you are a little early yet, and should give your new medication a chance to work.  Still, if/when the time comes that you think surgery is your last option, embrace it without fear.  It was life changing for me in a good way.

FPO irisheyes
Joined May 1, 2013

Tue, March 14, 2017 7:06 PM

Reply posted for mavman41.

My suggestion is to hang in there, it doesn't take long to figure out if a med is doing its job or not.  In addition, there are loads of options now with new ones happening all the time.  If all of the Imuran's and 6MP's and Humira's and Simponi's and others are exhausted, then it's definitely major surgery but also not the end of the world.  In addition, if it just becomes so painful that you can't go through all the options, don't be afraid to opt for surgery if that's really what you want.  But with so many treatments now available, it pays not to be hasty.  And also it pays to have the best doctors up on the latest meds.

FPO gcrawford
Joined Mar 14, 2017

Tue, November 22, 2016 4:25 PM

 Reply posted for mavman41.

I've had the surgery done and the J pouch done.  It's a major, major surgery and takes a long time to recover.  It was good at first, then I started getting pouchitis, then it turned out I have Crohn's disease as well.  Remicade hasn't helped.  Had a colonoscopy yesterday and that didn't go well.

FPO charbs
Joined Oct 31, 2016

Tue, November 22, 2016 3:49 PM


I have been living with UC for 2 1/2 years now. I was diagnosed when I was 25 and I just turned 28. I have tried almost every class of medication and all of them stopped being effective. I am currently on my sixth round of prednisone and scheduled for a Total Colectomy with a JPouch surgery next week 11-31-16.(It will be done in two surgerys) I found a great story on here from someone who had the same surgery done. If you go to Personal Stories,
Topic: Surgery
Disease: UC
Gender: Male
Age: 26-45
The person is mdhilton UC to Pouch Photo Journal

I read his story and it helped put me at ease a little more.
I am going to try and post after my surgery, I hope this helps out.

FPO mschonherr
Joined Jun 12, 2017

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