Should my husband go ahead with a colectomy?

Hopefully your getting a 2nd pathologist to look at slides, just having finished same nightmare! 2nd opinion came back only hyperplasia not dysplasia! Keeping my colon!
I’ve had similar course for 55 years.
All the worry caused a flare now I’m trying to heal my gut. Will do do fecal C test to check inflammation status in 3-4 months and decide on entyvio or continue current oral meds

That's incredible and encouraging to hear. Congratulations and I hope your flare up soon subsides and you find the best treatment. We are trying to get a consultation with a further expert who is known for doing things differently and we hope this might give us further options. We accept that a colectomy may become the only sensible route but just want to explore other possibilities first. When you are given such a difficult choice it is indeed a nightmare.

Hi, I was diagnosed with chronic severe ulcerative colitis at age 40 by Dr. William Tremaine at the Mayo Clinic in 1996. I was so ill and had been hospitalized twice before my doctor referred me to him. I was near having to have a colectomy but Dr. Tremaine said he "wanted to try one more thing" and try to avert the life changing surgery. I have been on the lowest dose of azathioprine (Imuran) for 29 years. I have some minor side effects that just starting appearing in the last year such as some skin cancer which was taken care of. I have lived in Colorado, Iowa, and now Kansas and nearly every GI doc suggested that I have a complete colectomy because the further you get from the date of your original diagnosis the chances of getting colon cancer increase. I have no family history of colon cancer and for the past 29 years I have had maybe one flare of just cramping and a bit of diarrhea - probably caused by what I had eaten. This year, Nov 2023, I had a precancerous polyp and the GI doc said I should have a colectomy. I have decided I would rather keep my colon as the colitis is well managed with my medication and diet. I have informed my GI doc that I do not wish to take on that huge lifestyle change at age 69. I am now scheduled for annual colonoscopies as well as the usual twice a year liver function blood tests. It is a difficult decision but one I have had time to discuss with others who have had this type of surgery. We all must make our own decisions but we have to remember that our doctors are giving us information based on present protocol and that they mean well. I do agree with the others who have posted getting a second, third, or perhaps a fourth opinion because this is a huge and life changing surgery. Communicating with your GI doc your questions and concerns is a must. Let him/her know what your goals are for your life. I am not a doctor but I am an adult who has been managing my severe chronic ulcerative colitis and asking my GI doc to help me reach my goal of keeping my colon. I wish you the best whatever your decision ends up being.

Thank you for sharing your inspiring story. You are brave. As suggested by many people we are seeking further opinions that are so far weighing heavily on the 'go ahead' side. But as you point out it is ultimately the patient's decision, which needs to be taken with the doctors' advice. I hope you continue to stay well and avoid surgery.

I have had UC for 26 years. One hospitalization (caused by me discontinuing meds) and mostly managed disease. I was to the point of annual colonoscopy. In 2019, a partially obstructing tumor was found (even though scope was clear a year prior). Surgeon recommended colectomy (said my colon had been given a good run) and Mayo GI advised the same. I was 53 at the time and am still quite active. I just couldn’t quite get my head around a colectomy. I went to a cancer center and was accepted as a patient. I had a bowel resection and immediate reconnection. Surgeon felt there was enough healthy tissue to warrant saving. It wasn’t without problems, and I’m sure my UC made it extremely difficult. I had four surgeries and was in ICU. But I still have my colon and am now on Entyvio which seems to be helping. More importantly, I have zero regrets for fighting for what was best for me. I’ve met with several doctors at Mayo who still think I’m making a mistake, but this is what my choice was. It’s something I really felt strongly about, and I feel comfortable that my risk of cancer is the same as it was before.
One thing that came up in a recent appointment at Mayo was that I wasn’t the only patient with this mentality, and that research is showing risk may not be as high as initially thought

Hi Lisa Thank you so much for sharing your story. You are brave to have stuck to what you feel is right for you and I admire your strength. It is interesting to learn that the risk may be less and I've also read a few papers indicating this. This week we have had an appointment with an oncologist who has told us that in my husband's case, the risk of cancer is very high and because his colon is full of polyps, surveillance going forward is not going to be very effective. So he has, with great difficulty, decided to go ahead with the colectomy. It is going to be very tough but the operation is on Monday so we don't have long to wait (as long as it's not cancelled again). I wish you all the very best for the future.

Thank you for sharing your story. I am also one who wants to keep my colon. Even though I have had colitis since 40 - now 69 - I have had no real flares or issues since beginning my medication. There are side effects to every drug but I was determined to keep my colon and my mindset has always been so. I believe you are right when Mayo states that you are not the only patient with wanting to keep your colon. I admire your resolve to do what is best for you. I hope the Entyvio continues to improve your health. Best wishes to you.