possible internal scarring from surgery is making chemo a challenge

trishisintune
trishisintune Member Posts: 5
edited March 2014 in Colorectal Cancer #1
Hi Everybody,
I'm stage 4, age 52, diagnosed in Jan. 2010. Got the rectal tumor out in May, the colostomy was reversed in July when I had 60% of my liver removed (2 small tumors). I am so far NED and started chemo on Sept. 9. So far, so good, and I am hopeful.

Here's my problem. The chemo tends to constipate me. Four times now (every time I have chemo), I have spent most of the day throwing up, then most of the next night sitting up in my recliner with acute abdominal pain. It seems I have a narrowing of my intestinal tract due to the surgeries and that problem, added to the constipation from the chemo, just blocks me up. Finally, after about 24 hours, the "dam" breaks and I get a mixture of hard bowel movements and pure liquid diarrhea. All of this is exhausting and quite painful and I always end up taking time off from work to deal with it.

I have started Miralax to help with the constipation on the first 3 days of chemo, and that seems to have helped, but it's still too early to tell if that is the magic bullet. It's easy to overdo the Miralax; last time, I ended up having an "accident" while at work; good thing I brought a change of clothes.

Any one else have these problems, and if so, what did you do to solve them?

I'm a teacher and still working full time. I'm trying desperately to avoid taking any sick leave. Help!

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Chemo always constipated me
    tho not as severely as you are describing. I kept up the Colace throughout chemo, and maybe Senna on chemo nights to ensure that things would keep moving.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #3
    Same thing
    I don't have a bag, haven't had colon surgery yet, but yes, I have the same thing after chemo, no going for 3 or 4 days, then hard little baby ones, then here come the diarhea.
    I just wait for the diarhea to come, then take my immodium and go from there.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #4
    Pericolace and Emend
    I think most of us have constipation issues the first few days. I had a resection (sigmoid) but that isn't the issue at all. For most of us it isn't the actual chemo that constipates - it is the antiemetics (nausea drugs) or other drugs they give us.

    Not sure which chemo cocktail you are on. I had a very definite pattern on FOLFOX and was able to mostly control the constipation/dairrhea train. On night #1, 2 and 3, I would take pericolace to keep my stool softer and keep from too much constipation. I did not take it on night #4, because on day #5 I'd have the solid stuff move through followed by the liquid diarrhea. I'd wait till after a few episodes of that diarrhea because it seemed to me it was my body purging toxins - I wanted it out before stopping it all. So later on day #5 I'd take Imodium. Sometimes I'd need it on day #6 too. After that I'd be more back to normal.

    Now I'm on FOLFIRI and I was warned about the bad diarrhea associated with it. So I didn't take anything for constipation first cycle. BAD idea. I was blocked up for days. I did get the diarrhea, but not until the second week. And Imodium wouldn't stop it - not even taking it the "Irinotecan plan" way, which is two to start, then one every two hours, with two at bedtime, set your alarm to take 2 four hours later. Then I got a prescription for Lomotil and one tiny little pill stopped it for me!

    My second round of FOLFIRI and I'm at day #11. I took pericolace the first 3 days, and it went pretty well. I haven't taken anything since. I did get atropine by IV during infusino this time. I have not gotten the diarrhea yet. I'm constantly nervous it is going to hit at an inconvenient time. But maybe I've already got my new "pattern." Atropine during infusion, 3 days of pericolace, and then I'm ok?

    The best thing you can do is keep track of your side effects on a daily basis - keep a diary. Then tweak your next cycle accordingly. Keep the diary again, and tweak again if necessary. Often you can find a pattern and mostly control it.

    As for spending most of the day throwing up - that isn't good. There are drugs to help with that too. What are you getting for antiemitics? Have you tried Emend? It is a miracle drug for me, and for many people. I get Aloxi and Emend by IV before infusion, and then take the Emend pills for the next 3 days. Others have good luck with Zofran (works a little, but gives me bad headaches). Others do better on Compazine (I'm allergic to that one). And some like Kytril (works ok for me - but causes headache). The one thing about pretty much any antiemetic is that they tend to be constipating. So with your past history, I'd take pericolace the days you take any of these.

    I hope you can get this under better control soon. Be sure to talk to your oncologist about these issues and let them know you need better side effect control to live your life.
  • trishisintune
    trishisintune Member Posts: 5
    #5
    Kathryn_in_MN said:

    Pericolace and Emend
    I think most of us have constipation issues the first few days. I had a resection (sigmoid) but that isn't the issue at all. For most of us it isn't the actual chemo that constipates - it is the antiemetics (nausea drugs) or other drugs they give us.

    Not sure which chemo cocktail you are on. I had a very definite pattern on FOLFOX and was able to mostly control the constipation/dairrhea train. On night #1, 2 and 3, I would take pericolace to keep my stool softer and keep from too much constipation. I did not take it on night #4, because on day #5 I'd have the solid stuff move through followed by the liquid diarrhea. I'd wait till after a few episodes of that diarrhea because it seemed to me it was my body purging toxins - I wanted it out before stopping it all. So later on day #5 I'd take Imodium. Sometimes I'd need it on day #6 too. After that I'd be more back to normal.

    Now I'm on FOLFIRI and I was warned about the bad diarrhea associated with it. So I didn't take anything for constipation first cycle. BAD idea. I was blocked up for days. I did get the diarrhea, but not until the second week. And Imodium wouldn't stop it - not even taking it the "Irinotecan plan" way, which is two to start, then one every two hours, with two at bedtime, set your alarm to take 2 four hours later. Then I got a prescription for Lomotil and one tiny little pill stopped it for me!

    My second round of FOLFIRI and I'm at day #11. I took pericolace the first 3 days, and it went pretty well. I haven't taken anything since. I did get atropine by IV during infusino this time. I have not gotten the diarrhea yet. I'm constantly nervous it is going to hit at an inconvenient time. But maybe I've already got my new "pattern." Atropine during infusion, 3 days of pericolace, and then I'm ok?

    The best thing you can do is keep track of your side effects on a daily basis - keep a diary. Then tweak your next cycle accordingly. Keep the diary again, and tweak again if necessary. Often you can find a pattern and mostly control it.

    As for spending most of the day throwing up - that isn't good. There are drugs to help with that too. What are you getting for antiemitics? Have you tried Emend? It is a miracle drug for me, and for many people. I get Aloxi and Emend by IV before infusion, and then take the Emend pills for the next 3 days. Others have good luck with Zofran (works a little, but gives me bad headaches). Others do better on Compazine (I'm allergic to that one). And some like Kytril (works ok for me - but causes headache). The one thing about pretty much any antiemetic is that they tend to be constipating. So with your past history, I'd take pericolace the days you take any of these.

    I hope you can get this under better control soon. Be sure to talk to your oncologist about these issues and let them know you need better side effect control to live your life.

    Thanks so much for the
    Thanks so much for the suggestion of a diary, Kathryn. I tried that and I think I'm seeing a pattern. I now limit the Kytril to just the first 24 hours, and I take Miralax twice a day (with colace in the evenings) for the first 48 hours and then a 1/2 dose of Miralax in the evenings + colace on days 3, 4 and 5. That's what I plan to do for round 4. I'll keep my fingers crossed.

    I think I'm throwing up due to blockage, not nausea, which is why I'm taking all the Miralax. I actually get very little nausea.

    Does anyone else get this blocked up? Since this happens occasionally even when I'm not on chemo, I think it's the colostomy reversal that left some scar tissue or narrowing of the intestine. Comments, anyone?
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #6
    trishisintune said:

    Thanks so much for the
    Thanks so much for the suggestion of a diary, Kathryn. I tried that and I think I'm seeing a pattern. I now limit the Kytril to just the first 24 hours, and I take Miralax twice a day (with colace in the evenings) for the first 48 hours and then a 1/2 dose of Miralax in the evenings + colace on days 3, 4 and 5. That's what I plan to do for round 4. I'll keep my fingers crossed.

    I think I'm throwing up due to blockage, not nausea, which is why I'm taking all the Miralax. I actually get very little nausea.

    Does anyone else get this blocked up? Since this happens occasionally even when I'm not on chemo, I think it's the colostomy reversal that left some scar tissue or narrowing of the intestine. Comments, anyone?

    Trish
    I haven't had a reversal yet but, I do have a serious parastomal hernia that causes me blockage if I dont'really watch what, how much and when I eat and if I don't keep things flowing smoothly. Since you just had the reversal I wouldn't think that you would have blockage from a hernia though because they would have spotted one during your surgery? I did have to work out an elaborate plan to keep everything moving just right. I just got things manageable about 3 weeks ago but, now I'm going to start chemo so that should be fun. I'll probably be back at square one. Oh well.

    I hope that the plan outlined works for you. Keep us posted on how it goes.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    Chemo
    Never had a problem with constipation during chemo. It was always the opposite with me, but everyone always reacts different. Make sure that your doctor knows about everything that you are experiencing because there are so many drugs out there that can help you. Don't settle with a drug they gave you and think that this is the only one. Hope you feel better soon.

    Kim
  • Nana b
    Nana b Member Posts: 3,030 Member
    #8
    Annabelle41415 said:

    Chemo
    Never had a problem with constipation during chemo. It was always the opposite with me, but everyone always reacts different. Make sure that your doctor knows about everything that you are experiencing because there are so many drugs out there that can help you. Don't settle with a drug they gave you and think that this is the only one. Hope you feel better soon.

    Kim

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  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #9
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