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Denise1966
Denise1966 Member Posts: 90
edited March 2014 in Colorectal Cancer #1
Thank you everyone for all your responses to my questions up to this point. I now have another one and hope that all with the prior experience can help.

I went through chemo/rad, then had surgery 1 week ago. I now have an ileostomy. My surgeon told me he will check in 4 weeks to see if it is healed and can at that point reverse it and then I can continue with my chemo treatments or I can leave the ileostomy for another 6 months during the chemo. I am having a very tough time with the ileo and leaning towards early reversal, I would appreciate everyones thoughts on this. Thank you!
Denise

Comments

  • nudgie
    nudgie Member Posts: 1,478 Member
    #2
    I had the same situation with my temp colostomy, but opt'd to keep my temp colostomy until I finished chemo because I wanted to start and finihs my chemo as early as possible so the little bastards had not chance to do anything else inside.

    Timframe: Emergency colon cancer surgery 7/06. Stage II. Port put in Aug 08 and started chemo in Aug 06. Finsihed chemo in Nov 06. Colon resection surgery Feb 07. 2 years NED.
  • HDLadyRider
    HDLadyRider Member Posts: 10
    #3
    My husband could not deal with his ileostomy very easily either. The docs all suggested strongly that he do his chemo first since he was at very high risk of recurrence. He chose the reversal route first and recently just restarted chemo. Had a CT scan this past Monday and found a "new" tumor already at 1.4cm. Don't know if it would have changed things by going back to chemo first and we cannot alter that situation anyway. Just my two-cents worth of food for though.
  • Denise1966
    Denise1966 Member Posts: 90
    #4
    HDLadyRider said:

    My husband could not deal with his ileostomy very easily either. The docs all suggested strongly that he do his chemo first since he was at very high risk of recurrence. He chose the reversal route first and recently just restarted chemo. Had a CT scan this past Monday and found a "new" tumor already at 1.4cm. Don't know if it would have changed things by going back to chemo first and we cannot alter that situation anyway. Just my two-cents worth of food for though.

    What stage is your husband? What was the timeframe for the reversal and start of chemo?
  • HDLadyRider
    HDLadyRider Member Posts: 10
    #5
    Denise1966 said:

    What stage is your husband? What was the timeframe for the reversal and start of chemo?

    My husband is Stage IV. He was diagnosed Sept '07, did chemo until the end of January. Had colon and liver resection surgery (and ileo done) on March 17 with his ileo reversal on May 5th. He restarted chemo on June 10th. It was 3 months from liver resection to finding out there was another tumor growing. He was without chemo for a total of 4.5 months. He had to do what he felt he needed and he is still content with the decision he made. He had so many issues with the bag. Best of luck to you in your decision. Like him and I discussed prior to him making his decision, we never know if ANY of the decisions we make with cancer are right or wrong.
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #6
    I also hated the ileostomy so I jumped at the chance for early reversal. Mine was done 8 weeks after surgery. Then they had to delay the start of chemo because I had such diarrhea, I received only 4 out of 12 post op chemo treatments and they were stopped due to bad diarrhea. Even after chemo i still had many bathroom issues. Eighteen mos. later I had a colostomy done. I was stage 3, and my tumor was very low. I havent looked back. The colostomy is easier to deal with than the ileo.

    I would suggest waiting until you were done chemo.

    In my case it probably wouldnt have made a difference. I have alot of radiation damage. But, I am alive 5 years later.

    Good luck with whatever you decide and if you want to email me maybe I can help you.

    Maureen
  • pamysue
    pamysue Member Posts: 105
    #7
    Denise,

    I have an ileostomy that I thought I would NEVER be able to deal with at first. My surgery was May 7. Now, I'm in the middle of my 2nd chemo treatment of 12. I'll have me reversal 4 weeks after my last chemo.

    Messing with the ile on a daily basis is a pain. But, it gets much easier to deal with much quicker than you can imagine at this time. I also have a wonderful home health nurse. More than teaching me how to deal with changing the apparatus, her encouragment and warmth gave me what I needed to suck this up.

    Don't give any little cancer cells time to reproduce. Start your chemo and your countdown. I won't say you will get used to the ileostomy, but it will not kill you.

    I also found a great deal of support and information at www.healingwell.com on the Ostomies board. Many of the people there have been living with these things for decades.

    My best wishes and warmest thoughts are going out to you. Any advice or encouragement I can give you is here when you need it.
    Pam
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #8
    Hi Denise,

    I had mine reversed 9 months after the surgery. I was stage 4 with liver mets. Original surgery was Jan. '02. Chemo until July '02. Built up strength til reversal surgery Sept. '02. I was never given an option. The purpose of the ileostomy (I was told) was to let the surgery site heal. So by reversing it really soon, I think that might alter the healing.

    Just a thought....

    HAPPY FRIDAY!!!!!!! (from the longest week in history, I think!)

    Stacy
  • 4law
    4law Member Posts: 110
    #9
    I started post-op chemo with an ileostomy, but after a few weeks I became very weak and was admitted to the hospital because of low potasium. It was felt that I was losing nutrients because of the ileostomy so it was reversed. It caused a delay in my post-op chemo and I had to start over (6 weekly treatments, 2 weeks off, for a total of 32 weeks) without credit for the several weeks treatment before my hospitalization. I hated the ileostomy and although it resulted in months of delay and prolonged chemo, for me, it was worth reversal although it prolonged the chemo. I guess it get down to what you hate more, or less, the bag or side effects of chemo for several months. (I'm fine today -- diagnosed 9/04, surgery 1/05 -- 3 1/2 years and NED.) The post-op chemo is more like an insurance policy after pretty good results following your surgery -- I don't believe it will make much of a difference -- the decision is entirely yours. Whatever decision you make will be the correct decision. It's your body and you know what is best for yourself. If my memory is correct, your cancer was an early stage and, just like me, had no lymph node involvement -- a good sign.
  • kristasplace
    kristasplace Member Posts: 957 Member
    #10
    Moesimo said:

    I also hated the ileostomy so I jumped at the chance for early reversal. Mine was done 8 weeks after surgery. Then they had to delay the start of chemo because I had such diarrhea, I received only 4 out of 12 post op chemo treatments and they were stopped due to bad diarrhea. Even after chemo i still had many bathroom issues. Eighteen mos. later I had a colostomy done. I was stage 3, and my tumor was very low. I havent looked back. The colostomy is easier to deal with than the ileo.

    I would suggest waiting until you were done chemo.

    In my case it probably wouldnt have made a difference. I have alot of radiation damage. But, I am alive 5 years later.

    Good luck with whatever you decide and if you want to email me maybe I can help you.

    Maureen

    I'm with you, Maureen. I did not have a choice. I wanted the ileostomy reversed as soon as possible, and i was a bit of a nag about it, but my doctor pretty much would not let me. He thought it was very important that i do the chemo first, for immediate cure. He kept saying that...we're going for the cure. So i suffer with the damn ileostomy and it's constant itching or aching, or bags bursting in the middle of the night so i can give myself the best chance for survival. Five more treatments and a little break, and it will be reversed hopefully FOREVER!

    I was also nutrient defecient in the beginning, and severely dehydrated, but now we have controlled that, and my counts are all normal.

    Good luck with whatever decision you make, Denise.

    Many hugs,
    Krista
  • Kodie
    Kodie Member Posts: 7
    #11
    Hi Denise,

    I wasn't given a choice to have an early reversal and I'm glad about that. I couldn't imagine going through another surgery so soon after my resection. The ileo does get easier with time. The key is the correct apparatus/paste etc. A good ostomy nurse would do wonders. It is up to you, but in my case the ileo became second nature for me. I had it 9 months. I actually miss it on some days. It takes a while for your bowels to function properly after the reversal. The other thing I wanted to mention is after my resection, I had pain in the resection area for months, I couldn't sit right in what seemed like forever. Are you experiencing any of that?

    Hugs, Pearl

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