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When to opt for surgery?

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Ulcerative Colitis
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Posted 1/15/2022 10:01 AM (GMT -8)
Hi. Hoping to receive some feedback from people who elected to have the surgery please. When did you decide it was time? Are you happy with your decision to have removal or do you wish you would have fought longer and harder?

about my battle: 14 months of severe UC except for a 2 1/2 relatively normal reprieve. Have been hospitalized twice : 8 day stay and a 4 day stay. On daily Imuran. On my 4th course of prednisone. Have failed mesalamine, Humira, Inflectra at 10mg/kg BW. Now 7 weeks into trying Entyvio and my fecal calprotectin is still >3000, and major, major, major debilitating pain. Unfortunately, prednisone does not seem to be nearly as effective as it was earlier.

At what point does a person say, “I have fought this hard but I am ready to have surgery and hopefully be done with the pain?” Thank you for your comments.
Posted 1/15/2022 10:15 AM (GMT -8)
Hi maybe try LDN first? Low dose naltrexone, on line doctor can help
Posted 1/15/2022 10:52 AM (GMT -8)
Have you tried changing your diet?
I've had severe pancolitis for 6 years.
I decided to throw everything I've got at my UC in terms of the natural route.

The biggest of which is my diet.

I've been on Pentasa,Imuran and Remicade. Pred stopped working for me too.
Doc. wants me to try Entyvio. I told him to give me 3 months.

I'ts been two weeks and I am already seeing very positive results.

Blood is gone.

I cut out gluten,sugar,dairy,proccesed foods.

The ONLY foods I eat: Eggs,avocado,fish,homemade pickles,bananas cooked veges, loads of bone broth.

I plqn on slowly introducing other foods as time goes on.

You can never undo surgery.
Posted 1/15/2022 11:12 AM (GMT -8)
Basically it's subjective quality of life. I would never be able to tolerate as many do on here...truth.

q
Posted 1/15/2022 12:51 PM (GMT -8)
Thanks Yissurim. I am eating almost exactly as you hoping to find a benefit. I do include some tofu and salmon to help meet my protein needs. We shall see. My Gastro team still adheres to UC not being caused by diet, and nor can it be cured by diet change. But, I sure as heck hope sticking to a STRICT clean diet will help. I cannot see how it can hurt to try. Good luck to both of us.
Posted 1/15/2022 4:25 PM (GMT -8)
I’ve had surgery and it comes down to quality of life, don’t let life pass you by while you’re dealing with this disease.

You’ll hear from most of us who have had surgery that we wished that we did it sooner. I was on steroids for too long and needed another surgery to replace my hip in my 30’s. I might have to do the other one in a few years.

I have chronic pouchitis (everyone’s fear) and it really isn’t that bad. Having UC was so much worse. I sleep through the night and empty on my timeline. I love my j-pouch.
Posted 1/15/2022 6:26 PM (GMT -8)
After 32 yrs and my last colonoscopy showing a colon in very bad condition I wanted surgery. Dr wanted me to try Humira or Remi and I said NO. I tried enough different meds in 32 yrs and really didn't want to wait months for new meds to maybe work??. Last month or 2 before surgery were extremely tough to survive day to day. I got rid of a diseased body part and my life is great. Surgeries were Jan 9-2018/April 9/Aug 21. Best decision I ever made. No anxiety. No accidents in pants. Life is good. Good luck and be well
Posted 1/16/2022 7:34 AM (GMT -8)
I have severe fistulizing UC/Crohns..so I will be different from you. I fought against surgery for 2 years. tried LDN, beginning meds and then Remicade. While Remicade worked..sorta...we had to do a colostomy after I had an obstruction. I have had another hernia caused obstruction and the colostomy was moved a 2nd time. Both "emergency" surgeries but my Colorectal surgeon had made plans for surgery in case we needed it. In April I had the Hartmann Pouch sigmoid that was still remaining removed and the rectum mostly removed. I still have an anus. Post surgeries I am still on Remicade and methotrexate.

I feel better than I did before the surgery. Having a colostomy bag is better than constantly looking for a bathroom and having accidents. Gut wise things are pretty good. It's the other UC/Crohn's symptoms that I battle... Night sweats, arthritis, psoriasis, eczema, heat/cold intolerance, Uveitis, fatigue and nausea.

I'd do it again. My quality of life has improved.

Post Edited (clo2014) : 1/16/2022 8:39:56 AM (GMT-7)

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