Should my husband go ahead with a colectomy?

Posted by maryallen @maryallen, Mar 30 6:20am

My husband has had ulcerative colitis for 30 years, which has been well controlled with mesalazine. He has only been hospitalised once before diagnosis and has barely had any flare ups or symptoms. His last colonoscopy revealed low-grade dysplasia and was told he would need a colectomy. He is reluctant to go ahead because of the life-changing effects of the operation but is aware of the risks. I know all cases are unique but has anyone been through this difficult scenario? He is 69 and otherwise healthy and has surveillance colonoscopies annually. We are in the UK. Many thanks for any guidance.

Interested in more discussions like this? Go to the Digestive Health Support Group.

Wouldn’t they want to do a follow up colonoscopy before recommending surgery? How much of the colon would be removed. I had a third of my colon removed and it was a life changer for me.

REPLY
@lsdd13

Wouldn’t they want to do a follow up colonoscopy before recommending surgery? How much of the colon would be removed. I had a third of my colon removed and it was a life changer for me.

Jump to this post

Life changer in a good or bad way ?

REPLY

Maybe best to get second opinion before going through such a big surgery like that ?

REPLY
@rozy288

Life changer in a good or bad way ?

Jump to this post

In a bad way. I had an acute diverticulitis attack but waited until healed to have the surgery to limit the chance of having a colostomy( which thankfully no colostomy) but something happened which has caused me to have permanent bloating and distention,change in bowel habits and pelvic dysfunction( although some of that may not have been a result of surgery)
Get a second opinion!

REPLY
@lsdd13

Wouldn’t they want to do a follow up colonoscopy before recommending surgery? How much of the colon would be removed. I had a third of my colon removed and it was a life changer for me.

Jump to this post

Thank you. The colectomy was recommended in June 2021 after finding LGD. His last colonoscopy was July 2023 where nothing adverse was found. He's due to have the whole colon removed as the UC has affected it all. Just seems very drastic prophylaxis. When you say it was a life changer for you, I guess you mean in a positive way.

REPLY

Apologies I didn't read the whole thread. So not at all positive. I'm sorry to hear that. We've had two second opinions who both said go ahead but we're going to get a third one if we can in the short window we have before the surgery is scheduled. The op has been cancelled twice in the past month which has given us more time to question the whole thing and get more anxious about what it means.

REPLY
@maryallen

Thank you. The colectomy was recommended in June 2021 after finding LGD. His last colonoscopy was July 2023 where nothing adverse was found. He's due to have the whole colon removed as the UC has affected it all. Just seems very drastic prophylaxis. When you say it was a life changer for you, I guess you mean in a positive way.

Jump to this post

I consider the changes quite negative, but it had to be done to potentially save me from a rupture, so I guess positive on that level.

REPLY

I had my whole colon removed due to UC about 40 years ago, The surgeon told me when he removed it, it just kept falling apart in his hands, I lived a very normal life with an ileostomy until about 3 years ago. I got a parastomal hernia after a cold with a very bad cough which caused it.--
So I guess it all comes down to how bad each individual situation is.
Still best thing is get a good doctor/location and 2nd or 3rd opinions.
Take care

REPLY

The whole colon is going to be removed but hopefully the rectum retained thereby avoiding a stoma but this will not be known definitely until the surgeon is inside. We will persist in getting further professional opinions and then weigh up what they say I guess although the surgery is booked, for the third time, for 8th April. I definitely feel further discussion and a full explanation of the risks are required. Thank you all for your advice and personal experiences.

REPLY

@maryallen
Will you have time to get the 3rd opinion g before surgery?
He shouldn’t have the surgery until he understands why the surgery is done.
There is a higher risk of developing colon cancer with UC and your husband does have abnormal cells found on colonoscopy.

REPLY
Please sign in or register to post a reply.