Ileostomy reversal delay decision

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markatger
markatger Member Posts: 314
edited March 2014 in Colorectal Cancer #1
Hi again,

Another question for those who have had an ileostomy. I'm going to post this question on Shaz's site as well as talk to my surgeon.

I had my rectum removed on September 9th of this year and had a J-pouch created and temporary ileostomy. The surgery seemed to go well, but unfortunately I have been re-hospitalized twice likely due to partial blockages caused by adhesions.

I am now in the middle of 4 rounds of chemo. I then will have surgery to remove the entire left lobe of my liver which contains a metastasis. (I'm also wondering what that recovery is going to be like). They also will try to correct any adhesions on my intestines. And I was originally scheduled to have the ileostomy reversed at that same time. After recovery I am scheduled to have more chemo (I don't know how many rounds).

I have read of several people delaying their ileostomy reversal until after their chemo is completed. I am considering doing this. Any input on this would be greatly appreciated. Anyone out their have their ileostomy reversed after a short time and then have chemo - without having problems?

Delaying the reversal surgery would mean having a 3rd surgery after completing who knows how many months of post-surgery chemo. This would of course extend the length of time that I have the ileostomy by the same amount of time (I'm guessing anywhere between 4 and 6 months total.) But of course the advantage is that I could possibly save me some butt-burn of trying to re-train my J-Pouch while being on chemo. New J-Pouch and chemo doesn't sound like a recipe for success. Add into that, the problems I have been having with adhesions, which may or may not be fixed by surgery. I'm thinking my main focus post-surgery should be letting my liver recover and getting back on and finishing chemo. - not re-training my new rectum.

Thanks so much for your help
Maria : )

Comments

  • alihamilton
    alihamilton Member Posts: 347 Member
    #2
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    i cannot really help you on this but I tend to agree with you in that it might be better to wait until chemotherapy treatments are finished to reverse the ileostomy, so that you can deal with that more easily. I guess the doctor's thinking is that while they do the resection of the liver, it might be advisable to do the reversal at the same time to cut down on surgeries. As you say, you would then have to cope with retraining the bowel as well as ongoing chemotherapy. It might not be a problem but it might be more stressful for you and you really do not need that. I hope someone who has been through this can advise you.

    All the best to you,

    Ali
  • houseofclay
    houseofclay Member Posts: 63
    #3
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    My husband followed the suggestion of his surgeon and finished all rounds of chemo before having his ileostomy reversal. His stools were loose after the reversal which presented a challenge for the first couple of weeks and if he had been suffering from chemo-related intestinal distress, I think he would have been upset with reversing that soon. I don't know what type of chemo you will be receiving, though, so perhaps you won't have much of a problem with an early reversal. I do think that retraining your rectum while dealing with liver resection recovery and chemo sounds like a very full plate.
    Hope that helps.
  • goldfinch
    goldfinch Member Posts: 735
    #4
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    Maria,
    I THOUGHT I had waited til i was done with chemo. Had the ileostomy reversed, then 3 months later found that the cancer had spread to the lungs. I feel that having chemo at that time really delayed my healing from the reversal. I had a lot of difficulty with constipation, diarrhea, and an anal fissure (possibly related to the avastin they gave me). I was seriously considering going back for a colostomy. However, I got a 3 month reprieve from chemo this summer. The onc decided since the chemo was having no effect one way or the other we'd take a break and see what the lesions did-they grew-back. On a different chemo now. However the anal fissure healed, I was able to get the frequent bms down to several in the AM and several in the PM. I'm back to my constipation alternating with diarrhea, from the chemo. So far the fissure remains healed and my butt is not too sore from it, but I do believe it would be easier to tolerate with the ileostomy. We held off on adding the avastin to be sure to give the fissure more time to heal. I start it this week. Keeping my fingers crossed that the fissure is a thing of the past.
    Good luck with your decision. If you are coping well with the ileostomy I would consider keeping it while you're on chemo, even with the chemo being long term. I just think it's asking a lot of the body to learn how to poop again while you're bombarding it with chemo. However, perhaps others will write and say they had no problems. Again-good luck.
    Mary
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #5
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    Maria,

    As someone who has been there, done that, I have one word to say. WAIT

    I had my ileostomy reversed at 8 weeks postop. I was out of work and I figured that I had tolerated the preop chemo so well. I didn't want to go back to work and thaen have to go out again. Well, the chemo was torture. I received only 4 out of 12 treatments and had to stop. I had diarrhea so bad I ended up in the hospital on TPN. I was on TPN for about 3 weeks. I was able to go back to work while on TPN and not eating. I hung the TPN at nite. It infused for 14 hours. I was unable to complete the chemo. Even after that I never got better with the whole bathroom thing. On a good day, I went only 10 times and on a bad day 20 -30 times. My bottom was always raw. I went many times during the nite too. So about 18 mos. after my reversal I had a colostomy done. My life is better now. I never thought I could say that. And the best thing of all I remain NED. I had alot of damage from radiation, my surgeon thinks that helped with the poor bowel control. I also had all of my rectal tissue removed. I had colon stapled to my anus. My butt didn't know what do. I have also had many bowel obstructions also and adhesions.

    Sorry for the graphic post.

    Good luck wth your decision.

    Maureen
  • markatger
    markatger Member Posts: 314
    #6
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    Waahh... it sounds unanimous...that I should keep my little red belly-pooper for anther 4+ months.

    Oh well....better than butt-burn and not finishing chemo.

    Thanks a lot for everyone's input and for sharing your experiences.

    Maria

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