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Colectomy and NO MORE MEDICINE

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Posted 10/21/2018 10:00 PM (GMT 0)
I have Crohn’s disease and am on Humira 1x per week. My gastro doctor advised that it could be possible that if I have my entire colon removed, there is a chance that I would be able to stop all medicines for Crohns. Has anyone else had a colectomy/proctocolectomy and has stopped taking their medicine? If so, is it effective? I am worried that if I do have the surgery and stop medicine, I could continue to get other Crohns symptoms or it possibly spreading to my small intestines.

Thank you all!
Posted 10/21/2018 10:44 PM (GMT 0)
I had a colectomy last september it was an emergency though as it perforated , Im not on any medication as I dont have crohns anywhere for now atleast and my gastro doctor told me its not likely to come back as it was only in my colon when I had tests before and new tests this june showing normal small bowel and I dont want to take medications either if I dont need to but know it can come back
Posted 10/22/2018 5:59 AM (GMT 0)
I had my colon removed but I had UC not Crohns. It depends where your symptoms are bugging you the most, if it is mainly just in your Large Intestine you could benefit from removing it but there will always be the chance the inflammation in your small bowel which you may need to take meds for in the future. It is your decision and how bad your quality of life is becoming from the disease.
Posted 10/22/2018 4:06 PM (GMT 0)
With Crohn's, it's likely you will need medication again in the future. Maybe you would get a break, but to think you would be free of medication forever, is probably unlikely. Of course I am no expert. We have had people with Crohn's colitis, who have done well after surgery. Many are probably on medication.
Posted 10/22/2018 9:57 PM (GMT 0)
I have crohns and had most of my colon and my rectum removed in April and I'm still on meds. Currently I'm on Stelara since I've failed everything else. I've never been told I would be going off of meds, maybe since I've had active disease throughout my gastrointestinal tract.
Posted 10/27/2018 3:10 AM (GMT 0)
Had a total proctocolectomy due to Crohns in 2014. NO MORE MEDS. 😎
Posted 11/8/2018 10:36 PM (GMT 0)
I have Crohns disease. I had a total proctocolectomy and I am not on any medication. It will be 3 years in March and so far I've done great med free and no signs of disease have returned.

My disease was frequently referred to as Crohns Colitis and I never had any sign of disease in my small bowel. My understanding was that good candidate for no meds have never had any disease in the small bowel prior to surgery and you have the entire colon and rectum removed
Posted 11/13/2018 5:19 AM (GMT 0)
I had my proctocolectomy in July 2011 after a diagnosis of Crohn's Colitis with never having any involvement in my small intestine. I have never been on meds since my surgery and have no indication of any further disease. My GI had the attitude of, "if it ain't broke, don't fix it."

In reading up on Crohn's Colitis, to understand it as best I could, before agreeing to the surgery. I found that of the 5 types of Crohn's Disease only 20% of us fall under Crohn's Colitis, where the disease is confined only to the colon.

I also read that after a having a proctocolectomy for someone with Crohn's Colitis, and never having small intestine involvement, there is an 80% chance of NO recurrance. My GI agreed with that percentage.

There is no cure for Crohn's Disease, and I am ever mindful of that, but so far everything is fine and I have never regretted my decision.
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