More on travel (after takedown)

lauragb
lauragb Member Posts: 370 Member
in Colorectal Cancer #1
If all goes according to schedule, treatment wise, I will most likely have my ileostomy takedown at the beginning of June. We have a trip scheduled to the beach about 7 weeks later. It is a long drive with some distances between bathrooms in places. I know everyone is different. But is it realistic to think I will be able to manage on a 12 hour drive. It could be broken up into two days if necessary.....

Some of my travel anxiety is from dealing with the ileostomy (it is high output at times) and then the unknown of how I'll function post takedown.

I'd appreciate any input or advice from others. I know these concerns are minor compared to what others are facing at the moment.

Thanks in advance.
Laura

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Dear Laura
    I haven't any experience with a takedown as I have a perm colostomy, but I have read many of the posts here from others.

    Most have indicated that 're-training' takes a considerable amount of time. It is not that you will be on the road for so long, but that 'going' is often uncontrolable or nearly so and more often than you would think.

    I think you might enjoy the beach and your trip much more if you did the takedown after your trip.

    Whatever you decide, hope that all goes well for you.

    Marie who loves kitties
  • lauragb
    lauragb Member Posts: 370 Member
    #3
    Lovekitties said:

    Dear Laura
    I haven't any experience with a takedown as I have a perm colostomy, but I have read many of the posts here from others.

    Most have indicated that 're-training' takes a considerable amount of time. It is not that you will be on the road for so long, but that 'going' is often uncontrolable or nearly so and more often than you would think.

    I think you might enjoy the beach and your trip much more if you did the takedown after your trip.

    Whatever you decide, hope that all goes well for you.

    Marie who loves kitties

    Thanks Marie,
    I think
    Thanks Marie,
    I think traveling with the ileostomy would be easier too from what I've read. But I'm going to be trying to return to work (teaching young children) at the end of August so I need the longer time frame from surgery before then. Otherwise, I would wait.

    The job has to take precedence over the beach trip although I hope I can go. It sounds like it could be a challenge depending on how things function and I do have a straight colo-anastomosis. Oh well, right now I just need to focus on finishing chemo and then on to the surgery itself, one issue at at time, right? I'm sure I'll be posting more about this situation as it gets closer.

    By the way, I could be called Laura who loves labs (and terriers) :)
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #4
    Not minor
    If it affects your life, it's not minor. I haven't had an ostomy, so I can't offer advice, but I do wish you the best and hope you can enjoy your trip.

    *hugs*
    Gail
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    lauragb said:

    Thanks Marie,
    I think
    Thanks Marie,
    I think traveling with the ileostomy would be easier too from what I've read. But I'm going to be trying to return to work (teaching young children) at the end of August so I need the longer time frame from surgery before then. Otherwise, I would wait.

    The job has to take precedence over the beach trip although I hope I can go. It sounds like it could be a challenge depending on how things function and I do have a straight colo-anastomosis. Oh well, right now I just need to focus on finishing chemo and then on to the surgery itself, one issue at at time, right? I'm sure I'll be posting more about this situation as it gets closer.

    By the way, I could be called Laura who loves labs (and terriers) :)

    Maybe stock up on Depends?
    My friend was in the same situation as you...her reversal went well, no infection post surgery...but she just felt better about traveling with extra protection...

    Hugs, Kathi
  • John23
    John23 Member Posts: 2,122 Member
    #6
    Laura -

    I almost had a reversal back in 2007.... I am glad I never had
    the operation.... But we're all different, with different health
    issues and operative losses.

    A lot depends on how much small intestine, and how much
    colon you have, as well as -if- the Ileocecal valve has been
    left in.

    It usually will take a few months (at the least) for your intestines
    to "re-learn" how to act. Sometimes faster, sometimes never..!?!?

    Cycling between constipation and total liquid output isn't unusual,
    so wearing a pair of "Depends" undies may be of interest to you
    until things settle into some semblance of "normal".

    It's absolutely -not- a minor issue. The first few weeks of this
    novelty will wear you down, and the whole concept of not being
    able to fully control your output will drain you (pun intended).

    So, "to travel or not to travel"?

    Personally, I would give myself some time to adjust before setting
    sails for points unknown. If you have major problems while at home,
    and in your own town, you can modify your lifestyle accordingly.

    But... To get into unfamiliar places, away from the comfortable
    setting of your own home... wondering when the dribbling will
    stop....?

    I don't know about you, but my anxiety level would be at a new
    high point....

    You should be able to figure out what a long trip will be like
    within that 7 week time period prior to leaving.

    Good luck, and better health!

    John
  • lauragb
    lauragb Member Posts: 370 Member
    #7
    John23 said:

    Laura -

    I almost had a reversal back in 2007.... I am glad I never had
    the operation.... But we're all different, with different health
    issues and operative losses.

    A lot depends on how much small intestine, and how much
    colon you have, as well as -if- the Ileocecal valve has been
    left in.

    It usually will take a few months (at the least) for your intestines
    to "re-learn" how to act. Sometimes faster, sometimes never..!?!?

    Cycling between constipation and total liquid output isn't unusual,
    so wearing a pair of "Depends" undies may be of interest to you
    until things settle into some semblance of "normal".

    It's absolutely -not- a minor issue. The first few weeks of this
    novelty will wear you down, and the whole concept of not being
    able to fully control your output will drain you (pun intended).

    So, "to travel or not to travel"?

    Personally, I would give myself some time to adjust before setting
    sails for points unknown. If you have major problems while at home,
    and in your own town, you can modify your lifestyle accordingly.

    But... To get into unfamiliar places, away from the comfortable
    setting of your own home... wondering when the dribbling will
    stop....?

    I don't know about you, but my anxiety level would be at a new
    high point....

    You should be able to figure out what a long trip will be like
    within that 7 week time period prior to leaving.

    Good luck, and better health!

    John

    Yep, those are just the
    Yep, those are just the issues I worry about. This beach trip is an annual vacation so once there I would be okay since we stay in a house with a lot of bathrooms for our group, but long walks on the beach may be in question and certainly the food extravaganza it usually is would be different for me. Actually, while there last year is when I realized something was really wrong.....

    But the car ride, yikes! I was totally stressed going for radiation treatments an hour and half away last summer, rural roads. I did wear Depends for those trips. Of course, I knew where every bathroom was and barely made it a few times so that anxiety is my frame of reference. I am also very familiar with clustering. I had it post radiation and as a symptom of my cancer. Frankly, I'm concerned about the car ride home from the takedown which will be four hours long, also some long stretches without bathrooms...

    As far as what was taken out. I had a proctosigmoidectomy, all of my rectum and most of my sigmoid colon with a straight colo-anastomosis. I still have the ileocecal valve and the rest of my small and large intestines.

    Thanks for the support. You are right. It isn't minor, worrying about accidents. But I do feel fortunate that I have the option of even thinking about a vacation, whether I go or not this time.

    Light and love,
    Laura
  • khl8
    khl8 Member Posts: 807
    #8
    lauragb said:

    Yep, those are just the
    Yep, those are just the issues I worry about. This beach trip is an annual vacation so once there I would be okay since we stay in a house with a lot of bathrooms for our group, but long walks on the beach may be in question and certainly the food extravaganza it usually is would be different for me. Actually, while there last year is when I realized something was really wrong.....

    But the car ride, yikes! I was totally stressed going for radiation treatments an hour and half away last summer, rural roads. I did wear Depends for those trips. Of course, I knew where every bathroom was and barely made it a few times so that anxiety is my frame of reference. I am also very familiar with clustering. I had it post radiation and as a symptom of my cancer. Frankly, I'm concerned about the car ride home from the takedown which will be four hours long, also some long stretches without bathrooms...

    As far as what was taken out. I had a proctosigmoidectomy, all of my rectum and most of my sigmoid colon with a straight colo-anastomosis. I still have the ileocecal valve and the rest of my small and large intestines.

    Thanks for the support. You are right. It isn't minor, worrying about accidents. But I do feel fortunate that I have the option of even thinking about a vacation, whether I go or not this time.

    Light and love,
    Laura

    Laura,
    I had a great
    Laura,
    I had a great experience with the takedown, it took about 2 weeks to retrain my bowels. I was back to work after the takedown in 2 weeks. However, I still on occasion have a sudden urge to go but have managed to travel by car and to fly to europe with any major issues. I would suggest that when you finally venture out after the takedown to line your underwear with panty liners in the back. so if you have a small leak you can easily take care of it. I have to watch what I eat, for example, no salads before I leave for a trip as they go right through me. If you have any questions regarding a takedown please dont heistate to send me a private message.
    Kathy

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