Recent Proctocolectomy

Greetings. I'm new here, but facing my second bout of colon cancer. 20 years ago I had adenocarcinoma of the rectum (cancerous polyp). I went through surgery to remove it, radiation and chemotherapy.

Most recently I was diagnosed with a 5 cm long tumor extending from 2 cm above the anal verge to 12 cm - involing the descending colon.

We made an attempt at sphincter conservation surgery in Cleveland Clinic, but alas, in order to get the tumor and a clear margin, it was not possible.

So now I am left with a permanent ileostomy.

Genetic testing revealed that I carry Lynch Syndrome, so the entire colon had to be removed, since this was my second occurance (I am 48 now, my first bout was at age 28).

I guess the best news is that the pathology report on the colon and lymph nodes removed was that no other tissues/organs were involved.

The current plan is for minimal radiation (since I had lots before) and probably 4 cycles of chemo as 'maintenence' against anything that may still be floating around my system.

I have many concerns. First I am still recovering from the surgery (4 weeks out) I have to wear a wound vac to heal/seal my bottom, where they closed off the anus and rectum. that is the most uncomfortable part of the process.

I am dealing with the 'bag' and ileostomy, I guess it is what my life will become....constant attention to this new orifice that will hopefully NOT be the central thing my life revolves around, but that is where my head is at now.

I can't see too much future with being intimate again with my wife of 22 years, or returning to my regular job, or to my position as an instructor in martial arts...

I can't share these things with my wife, because 'nurse-care', is not really her thing. And, she just doesn't seem to want to talk about anything that I am dealing with.

So, there it is.... Facing a long road, again and hopefully all this will allow me to live the REST of my life cancer free, and to be able to return as 'normal' a life as I can... I just don't see it..


  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Welcome to the family
    Glad that you have found your way here. We share our experiences regarding treatments, surgeries, alternative meds, supplements, and most anything you can imagine. We also are the place to come when you need an emotional lift or just need to vent about life as it is now. The only topics we try to stay clear of are religion and in any environment those things tend to bring out strong opinions.

    So sorry to hear that you have had a recurrance after all this time. I am about 15 yrs older, female with a colostomy so not quite your same situation but close enough.

    I have no experience with the wound vac as for me they used surgical super glue and closed all that off with no problems.

    Be sure to let us know if you are having any probs or questions with the bag or ile as there are many who can offer advice from their own experiences. You might want to google 'ostomy fashions' to see some of the things available. They deal with male and female fashions, and there are some abdomine wraps which might make intimacy easier. Of course the guys here will be able to offer more info on that subject.

    You are still in the early days of all this and what may seem impossible to imagine now, may become possible in the not too distant future. Life can be good even with this type of situation.

    We are here to share our experience and compassion and understanding, so don't be a stranger.

    Marie who loves kitties
  • John23
    John23 Member Posts: 2,122 Member
    Mr. Foot.....

    You might want to visit the following site:

    United Ostomy Associations of America, Inc.

    I have had an Ileostomy since 2006. It was unexpected then,
    and I hated it for a few years. I no longer had the use of a colon.

    In January of this year, I had to have, what turned out to be,
    intensive intestinal surgery that left me with 1/2 my small intestine,
    and a new Ileostomy stoma. The old stoma was left in, making
    life miserable. I'm being told that for the rest of my life, I will
    have both Ileostomy stomas to service, complete with two
    ostomy appliances.

    Is it the end of the world? No. It's just another change that will
    make the "quality of life" a bit more of a challenge for me.

    Does/will it interfere with sex and intimacy? How can it not?
    But it will only to the extent you allow it to. The better -you-
    accept your new life, the easier it is for those around you
    to accept the "new you" as well. Please remember that?
    It -is- that important to understand and accept.

    My 81 year old brother-in-law lost his leg in an automobile
    accident a few years back. The recovery was long and painful.
    He now has a prosthesis, and back playing golf, going on cruises,
    and apparently enjoying everything a married guy enjoys!

    Is having an Ostomy any different than missing a leg?

    Try to take a real deep breath, and never feel you're all alone out
    here. You are not alone, and you are not some freak. You have
    merely undergone a surgical procedure to save your life, and you
    remain alive thanks to that. Rally with your life; enjoy the fact
    you remain alive, and -live-.

    It's really easy, once you're over the pity-party. Learn to see
    the humor of it all.

    And drag the wife into the bedroom by her hair, like a cave man.

    Ok.... forget that last one..

    But live now, while you still have the chance to.

    And..... go visit that UOAA web site.

    Best wishes to you and yours,

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    I'm sorry you are feeling so down about all this, and I understand. I know it must be an adjustment. I do know, though, that many here are dealing with similar physical situations, and they have been able to find ways to work with it. I'm sure they will help you out.

  • slightfoot62
    slightfoot62 Member Posts: 2
    The support will be vital, and thanks for all the comments and positive outlooks. I know that recovery will slow.. i am on my third week with this stupid wound vac, slurping and sucking stuff from my bottom wound. I want it healed so I can get on to the rest of my treatment protocols....
  • Thanks
    The support will be vital, and thanks for all the comments and positive outlooks. I know that recovery will slow.. i am on my third week with this stupid wound vac, slurping and sucking stuff from my bottom wound. I want it healed so I can get on to the rest of my treatment protocols....

    This comment has been removed by the Moderator
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Hello and welcome, but sorry you have reason to be here. Wow- after 20 years- that's kind of scary. You would assume if it went that long that it would be totally gone.

    Here's a suggestion... hope I'm not being too forward, but you mentioned it. This is not firsthand knowledge since I don't have an ileostomy or colostomy myself. But, I have a friend who does and we talk about everything. She mentioned that although it certainly isn't the same as before, she wraps her ileostomy bag/stoma area up in a scarf long enough to roll the bag up a bit in it and wrap around her waist. That way her husband doesn't have to see the bag during intimacy. Like I said, I don't have firsthand experience with that, but thought I'd pass it on just because it was fresh in my mind as my friend and I talked about this just a couple of days ago.

    To introduce myself to you... I'm Lisa and was diagnosed w/ stage IV rectal cancer in August of 2007 & I'm still in treatment for it. Hanging in there, though :)

    As I said, sorry you have to go through this again- I'm sure it was a huge shock after so long since your initial diagnosis. Good news is, it doesn't sound like it's spread beyond the local/original tumor area & that your recurrence was "just" a local recurrence- not good, but definitely better than spreading to other parts of the body.

    Hang in there- you'll get through this. I believe you'll find that there have been many changes and improvements in treatment in 20 years. Definitely advancements for antinausea medicines.

    Take care,