Community Forum

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.

Reply posted for RUSS1959.

RUSS, thank you for being open in this space. If you need a little extra emotional support, please call the National Suicide Prevention Lifeline: 1-800-273-TALK or connect with them via text or chat. The call is free and confidential, and crisis workers are there 24/7 to assist you. The Lifeline is there for everyone. We will be sending you an email separately with the link to the lifeline. Please look out for that. We are having some issues with links coming through here on the platform.

Thank you

Reply posted for cjckelso3.

reading this no only do i feel enormous empathy but its depressing.  I have been diagnosed with no only stomach ulcers, but irritable bowel syndrome and now colitis ...the later is probably ulcerative because of my history of ulcers. I haven't had a colonscopy, i can't even face that...  i hate invasive stuff and although i registered my city as Seattle (because I have to choose USA options), it is where i used to live and now I'm residing in Vietnam and therefore face formidable language barriers. The though of having colon removed and / or rectum is not acceptable to me... quality of life.... so I feel very lost and this doesn't help my long battle with depression. If, and there's a good chance this turns to cancer if it hasn't already then i feel suicide for me is the path to go. When I cannot go to toilet thats the end.  I am pumoing my system with very healthy food and juices, but right now my inflammation is high, I'm guessing that is the source of my daily pain, at least I hope so. I'm trying natural medicine now for 3 to 4 weeks to calm my stomach / colon etc down. I only had an ultrasound and MRI, obviously not invasive tests for my diagnosis. If you have family that you have strong ties with then good luck to you, hold on and do what you can. I don't. Although my post may seem radical and shocking....I always thought about quality of life, and what is the point of hanging around especially with negligible social life. You may ask, why am I here, to look for some health tips but I guess also is that to talk a little helps. Sorry again for your situation, and look to your family for strength. peace.

Reply posted for cjckelso3.

Hi, I'm in a similar situation. I have ulcerative colitis. I'm 51. A colonoscopy showed high grade dysplasia. A follow up colonoscopy showed the same. The surgeon advised total colon removal to avoid cancer. I may be a candidate for a jpouch. The surgeon actually suggested I get a 2nd opinion which I'm doing in a few weeks. It's not likely my prognosis will change. Part of me feels like rolling the dice. It seems so strange to remove an organ because it MIGHT get cancer. My IBD symptoms have been so much better with remicade. It might be easier to let go of my colon if I felt bad. I'm hoping I can at least put it off for a few months. My mental state is pretty rough, too. It's lonely which is why I guess I'm here. I feel like I'm living in a "before" bubble and I'm so worried about the "after." Anyway, hang in there.

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