New Member (long time reader)

Networks
Networks Member Posts: 13
edited March 2014 in Colorectal Cancer #1
I have been lurking around this Great site for some time now and would like to share my experience and get involved with this community.

I was DX'd with stage 3 rectal cancer in 3-2004 with one node that seemed suspicious per the ultrasound although CT scans were negative for node involvement. The mass was 6 CM in size in the rectum and was 7 CM from the Anal verge. I went through six weeks of chemo/radiation preoperatively (5fu via a pump for six weeks). After a 6 week rest the surgeon at the Mayo Clinic performed a TME (Total Mesorectal Excision).The Pathology reports indicated a complete pathlogical response from the previous treatments so there was no evidence of any cancer cells during the excision which is Great news! A temp ileostomy was performed. I received 6 months of Folfox chemo after the surgery.After the chemo my CEA was higher that the norm (3.8 at one point yikes!!) and my liver panel was also higher and they found an additional nodule on my liver. During my followup test all concerns were confirmed as benign and I went through the reversal of the ileostomy about 10 days ago. The takedown of the ileostomy has been Very Difficult to deal with.... I was informed that I would be in for a long recovery (bowel training for at least one year) I am not giving up on the reversal but I would like to get some feedback from anyone that has gone through the reversal. I will admit that it is getting a little better over time but seems unbearable at times but yet I have gone 8 hours without the urge/panic of going now at times but I have periods of time where I need to be very close to the toilet. I was so used to dealing with the ostomy bag and seemed free to do what ever I wanted. I would appreciate any feedback on this. Thank You

Comments

  • nanuk
    nanuk Member Posts: 1,358 Member
    You may already know of these, but here are a few ostomy sites for you to explore:
    www.ostomy.org
    http://www.uoa.org/discussion_main.htm
    http://ostomyinternational.org/
    http://homepage.powerup.com.au/~takkenb/OstomySites.htm
    Nanuk
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    Welcome to our board. You will find alot of support and help here.

    I also had a temp. ileos. for my stage 3 rectal cancer. I had preop chemo/rad and my reversal was done only 8 weeks after my surgery. I was only able to have 4 out of 12 postop chemo treatments due to severe diarrhea. I ended up in the hospital. My tumor was lower than yours, it was only 5 cm's from the anal verge. I was left with multiple BM's 10 - 30 a day which included many while I was trying to sleep. I had constant butt burn and could never be that far from a BR. I had occas. accidents also.
    To improve my quality of life and that of my family I had a permant colostomy done in Jan. While I wouldn't have picked any of this, I have my life back. I am able do things that I could't have done last year.
    You are definitely in the early stages of your reversal and must give it more time. I envy those that write in and have done well after their reversal. I hope that you will be one of them.

    If there are any other specific questions, just ask.

    Maureen
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    Moesimo said:

    Welcome to our board. You will find alot of support and help here.

    I also had a temp. ileos. for my stage 3 rectal cancer. I had preop chemo/rad and my reversal was done only 8 weeks after my surgery. I was only able to have 4 out of 12 postop chemo treatments due to severe diarrhea. I ended up in the hospital. My tumor was lower than yours, it was only 5 cm's from the anal verge. I was left with multiple BM's 10 - 30 a day which included many while I was trying to sleep. I had constant butt burn and could never be that far from a BR. I had occas. accidents also.
    To improve my quality of life and that of my family I had a permant colostomy done in Jan. While I wouldn't have picked any of this, I have my life back. I am able do things that I could't have done last year.
    You are definitely in the early stages of your reversal and must give it more time. I envy those that write in and have done well after their reversal. I hope that you will be one of them.

    If there are any other specific questions, just ask.

    Maureen

    Hullo and welcome to our family. I guess as a "lurker" you have come to realise the support available here so it is great that you have chosen to join us. Don't forget to check out the pers. pages for lots more info. You probably also have noticed that I am one of our "resident" humourists here....it is not by choice you understand...Sponger needed an adversary!
    As I read your post I understand that your recent tests proved ok...that is, "any further concerns were benign". I take it that means your liver is clean? If so that is great news for you and hopefully you will continue to get good results. I hope that your reversal will settle down and your quality of life improves. As always Jen and I sign off with luv and huggs my friend. Take care, Kanga n Jen
  • rejoyous
    rejoyous Member Posts: 259
    No advice here. I just wanted to send my congratulations on your good outcomes. I never want those good results to get lost in our other worries!
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    hi!

    I have no advice about the reversal but just wanted to extend a WELCOME to the boards!

    No more lurking for you! haha

    peace, emily who cannot lurk due to the inability to keep her trap shut!