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Complete Proctocolectomy

Anyone had this? I have been diagnosed with cancer in the transverse colon. So far it appears not to have gone outward yet. Doctors say I must have the last part of the
small intestine removed & everything down from there also removed, colon, rectum, anus. Have had Crohn's since 2006. Will have an Ileostomy. Doctors say if we leave
any of these parts in, the cancer will just reappear again due to the Crohn's.

BTW, the G. I. doc lost his colon due to UC at age 13, he's 65 now.

Anybody here have such an experience?
 

crohnsinct

Well-known member
Sorry to hear about your diagnosis.

No cancer here but my daughter just had her ileostomy surgery on 4/20. She was going to have a total procto colectomy with end ileostomy but they decided to just do a diverting loop ileostomy first to try to let the colon cool down and try the latest and greatest UC drug. But likely heading for total proctocolectomy in December.

We have met with two surgeons and prepared a lot for the surgery. Ironically my daughter’s surgeon also had the surgery, for cancer, he has Crohn’s also.

The surgery sub forum here isn’t as active as it used to be. You can try veganostomy. I know there are a bunch of people there who had the surgery due to cancer.

I am happy to answer any questions you might have about the ostomy though from a newbie perspective.
 
What kind of symptoms did you have prior to your diagnosis of cancer?

Actually, at this time last year, I was doing really well. BMs 2-3 per day most days. 4 BMs in 24 hours was a bad day, and that was rare.
BM quality was usually like applesauce, but sometimes better or worse depending on what I ate & just chance. Generally felt very good
overall. Could eat anything but hot & spicy stuff, which I don't care for much anyway. Was thinking I could be in complete remission in a few years.
Still feel this way now.

BUT... last summer went in for a checkup with my GP. Blood tests showed anemia. FIT test showed blood in stool. That led to a colonoscopy.
That showed a pre-cancerous lesion which the GI dr. said he could not remove & I needed surgery.

Decided I want a 2nd opinion. Got another colonoscopy. That one showed more problems including a carcinoma in the transverse colon.
New GI dr. said when one has colon cancer AND IBD, it's game over, that cancer will keep coming back. So he called for the procedure
mentioned in the first post.
 
What kind of symptoms did you have prior to your diagnosis of cancer?

Actually, at this time last year, I was doing really well. BMs 2-3 per day most days. 4 BMs in 24 hours was a bad day, and that was rare.
BM quality was usually like applesauce, but sometimes better or worse depending on what I ate & just chance. Generally felt very good
overall. Could eat anything but hot & spicy stuff, which I don't care for much anyway. Was thinking I could be in complete remission in a few years.
Still feel this way now.

BUT... last summer went in for a checkup with my GP. Blood tests showed anemia. FIT test showed blood in stool. That led to a colonoscopy.
That showed a pre-cancerous lesion which the GI dr. said he could not remove & I needed surgery.

Decided I want a 2nd opinion. Got another colonoscopy. That one showed more problems including a carcinoma in the transverse colon.
New GI dr. said when one has colon cancer AND IBD, it's game over, that cancer will keep coming back. So he called for the procedure
mentioned in the first post.
Good that you got a second opinion and found out everything. I wish I could be more helpful. Just wanted to send support. I am glad the doctor shared his own story with you. Please keep us posted.
 
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