Colon Cancer But Had Colon Removed For J-Pouch 19 years Ago (UC)

Flowers55 Member Posts: 4

I had ileostomy 19 years ago due to UC - had lost 55 lbs and 22 blood transfusions. Then J Pouch - It was a long period of adjustment, but had no regrets whatsoever.  About six months ago it started to be more painful then usual sitting,  getting worse every day.  I had a CT scan, at one time they tried to  drain the lump.  These were at world reknown hospitals.  I ended up going to the emergency room of one of the colo-rectal surgeons in area.  I went today and still in shock - and they are still going over pathology etc.  Doctor said I had colon cancer and even he was mystified, when I have no colon.  All of the sudden Evidently it is around the lump.He wants to put me in for chemotherapy and radiation - and mentioned I may loose some of my hip bone?? -  I am going to see the oncologist Wednesday as when I saw him a few weeks ago he said there was no need to worry as did my family Doctor.  I think they thought I was a hypochrondriac - - Oh yes, all Doctors but one wanted me to remove my rectum - 19 years ago - but a young intern said to do what I felt best - and a great military reserve Doctor specialist stepped in and saved my rectum.   I kept insisting something was wrong with my CEA?? high blood work - but was told that was due to the type of surgery I had had - etc. misc.  I feel like I am in one of those hospital spinning doors - I had to push the Doctors because of my consistent pain.  Unfortunately I was brain drained as Dr showed me the pix  but did not ask him those questions weighing on my brain today.   Thanks for "listening" 


  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    You've got to be kidding!
    You've got to be kidding! Have never heard of such a thing. My husband was diagnosed with UC (pan) in 1999. Very very sick with it throughout the years. Lots of aziathyoprine, steroids etc.... Went for regular scopes. Always knew the colon would likely have to come out once dysplasia was detected. Diagnosed with stage four cc two years ago. Sub-total colectomy and ileostomy. Now stage four cancer to deal with. May regrets re not having colectomy sooner. You were very smart to be proactive. Can't believe you developed cc anyways. I'm sure the doctors are confused. Did you deal with a lot of pouchitis over the years?

    Welcome to the group. Please keep us posted. Stay active here. You will learn a lot.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member

    Welcome to the board.  I'm sorry you are going through all this even after having an ostomy so many years ago.  Wishing you the best and sorry that you had to find us, but we are a great group of people that can help you through.  Please keep us updated.