Colostomy ???

Daughter02
Daughter02 Member Posts: 1
edited March 2014 in Colorectal Cancer #1
My mom has colonrectal cancer, had 6 weeks chemo/radiation and surgery coming up. She may need a colostomy and that is really making her nervous. Is there anyone been there/done that willing to share their story, nervousness, and outcomes? What life is like now? I would be greatly appreciated.

Comments

  • BillDrake
    BillDrake Member Posts: 17
    #2
    I made it through with surgery and Chemo. However, I will tell you that an uncle and my mother in law had colostomies 20 -30 years ago. Neither slowed down and both lived full lives. The mechanics of dealing with a clostomy were not all that difficult or unpleasent. I suspect things have improved considerably. If Mom needs one it is not the end of the world. Good Luck!
  • Patrusha
    Patrusha Member Posts: 487
    #3
    Hi Daughter,

    I had my surgery five weeks ago and the first thing I did was check to see if I had a colostomy when I came out of anesthesia. My husband was there to tell me they did not need to do a colostomy. It might be that way for your mom, too. If not, there are many folks here who can help her make the adjustment to her new waqy of life. Sometimes they even do temporary colostomies and then reattach the "parts" in a few months. I know it is hard to play the waiting game, but keep your chin up and pray for the best outcome for your mom.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    Cherriann, where are you????

    Daughter, dear....I did everything I could to avoid a colostomy.....tumor in first rectal fold was pretty close to that wonderful sphincter....I found a surgeon who specialized in low bowel resection....is mom's surgeon one of them?
    He used a special device...during the surgery, colon piece is cut out, one piece of this thing goes in one side of the colon, the other piece goes in the other side....as it snaps together, it folds and staples a ring around the fold...removed thru the anus....(that was why my old hemorroid acted up...hehehehehe).
    Either way, tho, mom's life is WAY more important than stomy/no stomy....you'll hear from others that are doing just fine, thank you, with theirs!

    Hugs to you and to mom!
    Kathi (51 years young)
  • vinny3
    vinny3 Member Posts: 928 Member
    #5
    Hi,
    I was diagnosed with rectal cancer 4/05 and had chemoradiation which greatly shrunk the tumor. I had a local excision first as we tried to avoid the colostomy. There were no cancer cells seen in the path specimen. However 7 months later the cancer recurred and I had an AP resection and permanent colostomy. If I had it to do over I would just have had the major surgery first. The colostomy is not that difficult and, for me, beats having to always be aware of where the bathroom is. Initially it seemed worse as the bag they first give you is transparent and not a pretty sight. However I quickly changed to an opaque bag. It really helps to have a good stoma nurse. I feel I can be just as active as before. I plan to return to playing tennis after my chemo is done. I have had to make a few adjustments in dressing as the colostomy is at about waist level. That makes it awkward in using a belt and tucking the shirt in but is doable. For a woman I think it may be a little easier in that aspect as you can wear looser clothes. There are women here who can tell you more about that.
    Your mother is getting good help from you and encourage her to post any questions to this site. I have learned alot here.
    ****
  • tennislover
    tennislover Member Posts: 64
    #6
    Hello there! I have a colostomy, I am 28 years old and I never expected that I would face the rest of my life with something like this. I had radiation to shrink the tumor and it worked, I would have only needed a temporary colostomy but when the surgeon got in there he found a nodule on the vaginal wall and had to take the rectum and everything out. Prior to having the surgery I had contemplated the pros and cons of the colostomy and chatted with people who have had them. A lot of people who have had the colostomy reversed have had a lot of problems with having to retrain their bowles, that wasnt something that I looked forward to having had bathroom issues for so long prior to my diagnosis. Some people actually chose to keep their colostomy or even request it after they have had the reversal. I have had mine for a little over a month and I will be honest it is an adjustment. My doctor was able to put it very low so I am able to wear a lot of the same things I did before. I can even wear a bikini top and board shorts if I am out in the sun and it doesnt show. I have had to get in the swing of things, getting the bag on right, leaking...little problems but I think I have it down now. The hardest thing has been the body image issue, I think most people would have problems with that. I still have a very hard time looking at myself in the mirror and I havent let my boyfriend of over a year even see the bag or what I look like with it. The actual stoma is a bit of a shock to see, it is still hard for me to look at it, all the pictures that I saw did nothing to prepare me for what it really looked like. In the end, I would rather have this bag than have bowl control issues or having to be in the bathroom 20 times a day. I know that the body image issues will be resolved and in the end you can do everything that you could before. Like my girlfriend told me, when you have a colostomy you can say for sure that you are NOT the one who let one rip in the car or elsewhere!!!!! Have a good sense of humor about it, my stoma nurse told me to name my stoma....... I havent thought of a name yet but I think it is a good idea. Hang in there!!
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #7
    I had a temporary ileostomy for 8 weeks. I was soooo happy to have the reversal surgery. I then spent the next year and a half either in the bathroom or looking for one. The bathroom ruled my life. I then made the hardest decision of my life and had colostomy surgery. I haven't looked back. I have my life back. I went on a criuse when I was 7 weeks postop and even went snorkeling.

    Life is better now.

    Maureen
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
    Moesimo said:

    I had a temporary ileostomy for 8 weeks. I was soooo happy to have the reversal surgery. I then spent the next year and a half either in the bathroom or looking for one. The bathroom ruled my life. I then made the hardest decision of my life and had colostomy surgery. I haven't looked back. I have my life back. I went on a criuse when I was 7 weeks postop and even went snorkeling.

    Life is better now.

    Maureen

    That's the point, isn't it Maureen?

    Life is good....beast has lost....
  • pepperdog
    pepperdog Member Posts: 96
    #9
    Moesimo said:

    I had a temporary ileostomy for 8 weeks. I was soooo happy to have the reversal surgery. I then spent the next year and a half either in the bathroom or looking for one. The bathroom ruled my life. I then made the hardest decision of my life and had colostomy surgery. I haven't looked back. I have my life back. I went on a criuse when I was 7 weeks postop and even went snorkeling.

    Life is better now.

    Maureen

    Maureen, your reversal situation scares me. My husband has a temporary ileostomy which will be reversed when he finishes Folfox chemo. We have completed 5 of 12 treatments. I have to say the frustration of dealing with the bag has been worse than the considerable neuropathy, nausea and other side-effects of the chemo. His body image is 'zero' and he's been extremely depressed. He calls the bag 'that son-of-a-****' and hates it. I am so afraid his experience with the reversal will be less than he expects. He has a very active digestive tract and has to get up usually twice in the night to dump the bag or it gets too full and the seal gives way. I am afraid this is an indication of how the bowel activity will be after the reversal. Any thoughts that may reassure me?
    Thanks,
    Pepperdog

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