rectal cancer/colostomy

lacuca
lacuca Member Posts: 1
edited March 2014 in Colorectal Cancer #1
my fiance who is 32 has been diagnosed with stage 3 rectal cancer. he has met with 3 surgeons all of whom have all reccomended that he get a permanent colostomy. this of course is very devastating news for him. i am not sure what to do at this point. he is going through his chemo and radiation and will do the surgery after that. but this is such a hard thing for him to accept.

has anyone faced this themselves and have any words of wisdom.

also can any of you reccomend any top surgeons at major medical centers that might be worth us making a trip,

thanks
cuca

Comments

  • taraHK
    taraHK Member Posts: 1,952 Member
    #2
    Hi Cuca,
    I am so sorry to learn about your fiance's diagnosis. But I wish you a warm welcome to this board. It is a wonderful source of information and support. I was also diagnosed with Stage 3 rectal cancer. My treatment was very similar to what has been recommended for your fiance -- chemoradiation followed by surgery. I had more chemo afterwards. I did have to have a permanent colostomy myself. Although my surgeon was hoping to do 'sparing' surgery, my tumour ended up to be too low. I know how devastating the prospect of a permanent colostomy is - believe me. But, I do want to tell you that, for me, it has ended up to be "no big deal". I work full-time, am very active with sports, socialize, wear whatever I want, and it has very little impact on my life. I won't say having a colostomy is nothing -- but the important thing is to beat the cancer and to be alive and living well.

    There are many people on this board who can recommend good surgeons and medical centers. Can you let us know which part of the country you live in? It is a good idea to think about a major medical center (esp a well-known cancer center). But it does sound like you have already been diligent about getting second opinions. I would be very happy to answer any questions you or your fiance have about colostomy (and I know others on this board would too). You can send me an email via this site by clicking on the envelope logo below my entry.
    Wishing you and your fiance all the best.
    Tara
  • nanuk
    nanuk Member Posts: 1,358 Member
    #3
    taraHK said:

    Hi Cuca,
    I am so sorry to learn about your fiance's diagnosis. But I wish you a warm welcome to this board. It is a wonderful source of information and support. I was also diagnosed with Stage 3 rectal cancer. My treatment was very similar to what has been recommended for your fiance -- chemoradiation followed by surgery. I had more chemo afterwards. I did have to have a permanent colostomy myself. Although my surgeon was hoping to do 'sparing' surgery, my tumour ended up to be too low. I know how devastating the prospect of a permanent colostomy is - believe me. But, I do want to tell you that, for me, it has ended up to be "no big deal". I work full-time, am very active with sports, socialize, wear whatever I want, and it has very little impact on my life. I won't say having a colostomy is nothing -- but the important thing is to beat the cancer and to be alive and living well.

    There are many people on this board who can recommend good surgeons and medical centers. Can you let us know which part of the country you live in? It is a good idea to think about a major medical center (esp a well-known cancer center). But it does sound like you have already been diligent about getting second opinions. I would be very happy to answer any questions you or your fiance have about colostomy (and I know others on this board would too). You can send me an email via this site by clicking on the envelope logo below my entry.
    Wishing you and your fiance all the best.
    Tara

    the only difference in my response and Tara's would be gender perspective. I found colostomy the least of my worries. He can contact me in the same manner via this site w/ questions. bud
  • Kanort
    Kanort Member Posts: 1,272 Member
    #4
    I don't have anythink to add to the other posts, but I do send you and your finance my prayers and well wishes. He is blessed to have you as his advocate. Please keep us posted on his progress.

    Hugs,

    Kay
  • ninthave
    ninthave Member Posts: 12
    #5
    I was 39 when diagnosed w/ stage 3, august of 05, very low tumor, about 10cm up from the end. Didnt now whether I was going to wake up with colostomy or not. I had temp ileostomy. They were able to reconnect with less than an inch above the anus. I was treated at UC Davis Med Center in Sacramento CA. Within 90 miles you have UC San Fran, and Stanford, all some of the best. Definitely agree to check with the top cancer centers, and colorectal surgeons. My heart aches for you guys, contact me if you like.
  • KierstenRx
    KierstenRx Member Posts: 249
    #6
    I am also a stage 3 rectal cancer patient who is also 32. I met with 2 surgeons and decided to go with the one who had a lot more experience with rectal cancer surgery. Both stated I would most likely end up with a permanent colostomy. I did the chemo and radiation and my tumor has shrunk significantly, although it may not be enough. I am still being prepared for a permanent colostomy after my surgery on this Monday. Although I was at first upset about the news, I quickly decided that surviving this is much more important.
    What has helped me mentally prepare for the idea of a permanent colostomy is facing it head on. I have done lots of reading, asked questions, and talked at length with an ostomy nurse. She really helped put me at ease. In fact the best thing psychologically she did for me was to put a bag on me in the location of where my colostomy would be. She then told me to wear it home. I wore it for the rest of the day and soon realized that it is not nearly as big of a deal as I thought it would be. I know it is going to take some adjustment. One other thing I have done pre-op is go to a medical supply company and look at the different bags and supplies that are available, that way I can feel like I have some control over the situation. I know you fiance is stressed and scared. The hardest thing for my husband is not being able to "make it better" for me. Just continue to be there for him. My prayers are with you both.

    Kiersten
  • vinny3
    vinny3 Member Posts: 928 Member
    #7
    Even though I am twice his age I thought having a colostomy would be the end of my enjoyment of life. I had chemoradiation first and then just a local excision to try to avoid the colostomy. Eight months later the rectal cancer recurred and I had a permanent colostomy with that surgery. As others have said it has become no big deal. Those who don't know me would never know that I have one. It is a shock at first as they use a transparent bag at first until you are comfortable changing it. It didn't take very long and I found the opaque skin colored bags to make a big difference. I also found that using odor eliminator drops with each emptying makes a difference as well. Even though it adds to the cost it is worth if for me. The biggest help is having a good ostomy nurse for the teaching and as a resource.

    Wishing you and your fiance the best. What area of the country do you live in?

    ****
  • MCarr
    MCarr Member Posts: 20
    #8
    I don't really have anything different to add, but would reinforce what others have told you. I was 36 and have had a permanent colostomy for 8 years. I also have an urostomy, so I wear 2 bags, or double ostomate. I was initially devastated by the news of potential colostomy and depressed before I even had the surgery. After having the surgery I have been able to enjoy life again. The ostomies and appliances associated with them alter some aspects of your life, but he will quickly get used to that. I am very active swimming, water skiing, jogging, softball and keeping up with 2 pre-school daughters.
    Good Luck and my thoughts and prayers will be with both of you!!
  • ruggersocks
    ruggersocks Member Posts: 78 Member
    #9
    First of all, welcome to the board. I'm sorry it's under these conditions, but I have found the board to be a wonderful source of information, support, and comfort.

    I also have been diagnosed with rectal cancer, Stage III. I was told by my surgeon I would probably have an ileostomy and just like you, I was completely devastated. Fortunately, or unfortunately, depending on how you look at it, my surgeon was able to perform the surgery without the ileostomy.

    But I did some internet searching and found a message board for folks who had ileostomies and colostomies. They were also very supportive and answered a lot of my questions. I met someone locally in my area and had her walk me through what it was like to have a colostomy. This more than anything, helped allay a lot of my fears.

    Here is the link to the website: http://www.uoaa.org/. Try also to meet with the hospital ostomy nurse prior to your surgery for answers to questions too.

    Please keep us posted. I'll be praying and thinking of you and your fiance.

    Hugs,
    Cheryl
  • nanuk
    nanuk Member Posts: 1,358 Member
    #10
    vinny's comment about having a good ostomy nurse brought back memories; the ostomy nurse measured the stoma location while I was lying in a hospital bed..consequently, the stoma ended up exactly on my belt line, and I can't wear belted pants..had she done her measurements with me standing up, I'm told this could have been avoided.

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