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UC for 30 years. Offered surgery


Thu, November 28, 2019 4:36 AM

Hi I've had UC for near on 30 years. I'm currently on humira but have produced antibodies of a silly rate to this. My doctor has suggested removing my bowel. I have 3 children and don't want to put them through any more unnecessary grief than this already does. Has anyone had their removed and if so can you give me and honest account of pros and cons?
thanks Nat

FPO Natalieg27
Joined Nov 28, 2019

Tue, February 25, 2020 9:24 PM

Reply posted for Natalieg27.

I ve had UC for 30 something years, I had my first surgery January 15th 2019 2nd April 15th, I ran into one complication, which I may have cause it on myself. But I finally finished up with all the surgeries. Just finish Feb 11th, I know longer have the pouch on the outside, I have the jpouch on the inside. I'm healing well, but it's going to take time. Its depending on you and what works for you. I had a great surgeon.

FPO Clscott
Joined Feb 25, 2020

Sat, January 11, 2020 1:56 PM

Reply posted for Natalieg27.

If you talk to a gastroenterologist he may give you options. If you talk to a colorectal surgeon he’ll want to take it out. A collectomy may be your best option,  I had one, but just be aware when you consult a surgeon, surgery is what the specialize in, and they look at you as someone with a challenging case for them. They give nary a thought to what your issues might be afterwards .

FPO charbs
Joined Oct 31, 2016

Sat, January 11, 2020 12:58 AM

Reply posted for Natalieg27.

bowel removal should be the last option, unless the pain is too much and causing you to be very ill.

do some research your self into other meds/options, and stand up for yourself while discussing it with your doctor.

sometimes doctors are too quick to just suggest surgery, and be a bit sly about just giving an over view of how the surgey will have all these benefits to your "new" life instead of fully explaining every single detail, by just causally brushing over any complications that can come with it.

Having, everything or just part of the bowel removed in order to give you body a break is a massive upheaval in your life. Getting use to having a bag permanently attached to your abdomen comes with its own set of new life rules and unique issues.

 

I have UC from age 4, and had many flare up through out my life, in 2007 my intestine ruptured, resulting in emergency surgery and being left with a stoma.

its a lot of work,

so dont be bullied or scared into surgery unless you feel it is 100% the right decision for you

FPO stomabob
Joined Jan 10, 2020

Sat, December 28, 2019 11:57 AM

Reply posted for Natalieg27.

Hi, are you still considering the surgery?
 I'm new to this site and unfamiliar with how it works and therefore not sure how many replies you've recieved to address your concerns.
 I've had my Jpouch for 26 years. I could offer some insite if a Jpouch is the surgery you're considering. Or even Living with an Ostomy. Surgery could be a good option compared to managing and living with the DIS EASE as you have for the past 30 years. 

Curious to know ..
Vickie

FPO vjdahlheimer
Joined Dec 28, 2019

Thu, November 28, 2019 11:19 AM

Reply posted for charbs.

By the way, you need to put yourself first here, don’t worry about  Your kids, they can be remarkably resilient. You wouldn’t forgo this surgery if it were colon cancer, would you?

FPO charbs
Joined Oct 31, 2016

Thu, November 28, 2019 11:10 AM

Reply posted for Natalieg27.

I wouldn’t do the surgery until I had tried every option.  Have you tried remicade or Entyvio?  The surgery is a big deal, with a long recovery time. Two surgeries with the j pouch procedure.  I had it done. Your life will be different but close to normal afterwards. 

FPO charbs
Joined Oct 31, 2016

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