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Potential Surgery

Sun, October 20, 2024 12:36 PM

My GI is recommending full colon removal. I dont yet know if i'm going to be a candidate for J-Pouch (hoping) - have to undergo a lot of liver testing first to see if its healthy enough. I am so scared....my family is demanding I get a second option. I'm not opposed but no one seems to understand what I am going through. I was diagnosed with UC in 2008 (im now 54) so this has been a lifelong thing for me. My last colonscopy showed severa dysplasia and huge polypos (20mm and 15mm removed) with so many more, they could not even begin to get them all.

Mental status is rough. A month after the colonscopy, my gall bladder had to be removed. I've lost 20 pounds and have no appetite at all.

cjckelso3
Joined Oct 20, 2024

Fri, November 01, 2024 2:04 PM

Reply posted for cjckelso3.

We are so sorry to hear about how difficult this has been for you, and we understand. It sounds like you are having regular monitoring and screening through colonoscopies, which is very important. A second opinion can sometimes be helpful for some patients to confirm that there are no other medical recommendations, but ultimately the decision for surgery is something you should partner with your doctor and surgeon about.

Undergoing those necessary tests are important and many people with IBD experience this prio to a surgery. After your results come in, be sure to have a conversation with your doctor to help you feel more confident in the decision and guidance you are receiving. Here are some tips, and questions you can ask that general, but please do customize them for your specific concerns:

1. Try to think of what may be your biggest fear about surgery, and bring them up with your doctor. Are you concerned about the risks of this surgery? Are you concerned about post-operative recovery? Be open with your doctor about these concerns so they can help give you the information you may need.

2. How long will my recovery be? What changes might I expect to my health and symptoms?

3. If I get a pouch surgery, what will treatment look like for me afterwards?

4. If I get a total colectomy, what will my daily living look like?

5. What are the pros and cons of each option I have? Are there other options beyond surgery for me?

6. How do the recent tests I have done guide you in your recommendation for me?

These are only a few starting points but the key is to open up that discussion with your healthcare team.

You may also want to know that you are not alone in this journey. Fear and anxiety among other mental impacts can really be tough on people with IBD going through this situation because there can be so much unknown. Here is some information you might find helpful. Speaking to other patients, getting trusted information online, and your medical are all great resources too!

Support groups, where you can meet others and share experiences: Crohn’s and Colitis Support Group | Crohn's & Colitis Foundation

General page with information about surgery: Surgery for Ulcerative Colitis | Crohn's & Colitis Foundation

Brochure on surgery: surgery_brochure_final.pdf

Educational video on j-pouch Understanding the J-pouch surgical procedure

administrator
Joined Oct 12, 2017

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