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Constipation on folfiri?

tachilders's picture
Posts: 313
Joined: Jun 2012

Seems like so far I am having more gas, bloating, and constipation with cramping than diarrhea after my first dose of folfiri. Anybody else have a similar response?  Diarrhea seems to be the most common and problematic side effect of irinotecan but I do see constipation listed as a possible side effect. 

Posts: 500
Joined: Apr 2013

Hello, I'm not sure what Folfiri consists of, but my husband had severe constipation from day 1 of his Folfox treatment.  The oxalyplatin was cut out after 5 sessions due to his cumulative constipation causing another blockage.  He continued with 7 more treatments of just 5FU and leucovorin.  He takes a combination of senna laxatives, stool softeners, sometimes Metamucil or just Fiber One muffins or granola bars.  He does not like water, but I imagine drinking lots of water will also help.  He drinks vitamin water, gatorade, etc.  He may stay on this forever just to keep things moving.

Good luck with your treatments


LivinginNH's picture
Posts: 1458
Joined: Apr 2010


Yes, Rick had to take one full capful of Miralax each night, otherwise he would be in terrible pain the whole next day.


Posts: 2215
Joined: Oct 2011

I have had constipation on some treatments and have also had uncontrollable diarrhea on other occaisions.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Decolax and suppositories...  Worst pain I have had....   


Drink Prune juice daily, a small glass, it may help.  Bananas make it worse.

MaryCarol5's picture
Posts: 102
Joined: May 2013

5FU for me causes severe constipation for 5-7 days.  I do stool softeners.  Hope you get some relief.

joemetz's picture
Posts: 493
Joined: Nov 2011

while i was on folfox... diahrea.

Folfuri now... with Avastin, yet I also have a Fentenyal patch... they say the fentenyal is causing this to happen.

anyway... two Decolax tabs everyday.

stay ahead of it!!!    because it sure does hurt.


good luck


tachilders's picture
Posts: 313
Joined: Jun 2012

Well, it has been a LONG and TOUGH week for me since my first FOLFIRI treatment.  I had tremendous pain and cramping in my abdomen which made it impossible to sleep or eat anything.  I also had constant nausea.  It got so bad Thursday night (abdominal and back pain) that I ended up in the ER to check for a blockage, but luckily didn't have one.  Thursday at mid-day when I went in to get my pump removed I got sick and threw up about 6-8 times at the cancer center before they removed my pump.  I got sick at the hospital Thursday night as well.  After some x-rays and a CT scan they sent me home, but only after giving me stronger ani-nausea meds (pheregan) and a prescription for deloudid for pain (which I didn't have to take thankfully).  I had taken some Senokot S laxative on Thursday AM and finally passed some diarrhea on Thursday night.  That continued for another day or so, so then I took some Imodium to control the diarrhea.  Its now Tuesday and I haven't had much happen since Monday in the stool department.  I also was suffering from severe fatigue and drowsiness from the nausea meds.  I think some of the problem is that I have ascites fluid building up and the drugs can get in there and hang around much longer than normal.  I plan to get that removed this week before my next chemo treatment.  Forgot to metion that I only got a 80% dose of 5FU and irinotecan...  I think we are going to dose reduce further to try and avoid the side effects.  I lost 6 pounds in 6 days after taking the irinotecan.  Not sure I can take months of this stuff, which is the plan right now.  Here's hoping the second round goes better than round one.


lilacbrroller's picture
Posts: 412
Joined: Jun 2012

Hope you feel better soon



Sundanceh's picture
Posts: 4408
Joined: Jun 2009

It's always hard to get a good script for pain......they usually placate you will Hydrodone, Darvocet, or Tramadol.....I've found all of thes to be of no help at all.....and they constipate you in very short order.

So, getting a script for Dilaudid is good, Tedd.......check the mgs.....it should be 2mg. 

I was skeptical, but they really do take the heavy edge of pain away and keep you on your feet.  I just a script about a week ago, I was fast getting unable to function even at home.

These keep me stupid enough to keep me on my feet.  I usually try and take one every 10-12 hours....though you can take every 6 hours. 

Hope this won't be the forever plan....I dislike having to take any pain stuff...and Dilaudid keeps you back up....they all do....just suck the moisture right out of the colorectal cavity and turn it into a dry hole charley.

Folfiri is ruff stuff...I'll end up back on it probably will start there vs the oxy again.

Anyway good luck.

annalexandria's picture
Posts: 2573
Joined: Oct 2011

that sounds terrible.  I'm so sorry you're having such wretched side effects.  It brings back bad memories of my experience with FOLFOX, which I was told most people "tolerate well".  They said I must have been an outlier because I got so sick.  It seems like that's not really true, based on what I read on the forums.  Seems like many of us experience horrible symptoms.  Maybe they don't want to tell us the reality ahead of time, as it would just scare us to no purpose.

I hope things get under better control soon.


Posts: 1170
Joined: Sep 2012

Hi Tedd.  That sounds terrible.  I think once the fluid is removed you will have a much easier time.  Insist they do it before your next infusion.  Are ascites a regular problem?  How often do you have to have fluid drained?

tachilders's picture
Posts: 313
Joined: Jun 2012

They took off 1.7 liters 4 weeks ago, and I probably have close to that much back on (based on how I feel now as compared to then).  I'm thinking once a month is the plan going forward, until/unless the FOLFIRI + avastin reduces the build-up of the ascites fluid.  I don't want to sound pessimistic, but I just have this feeling that my best days are behind me and that I will be fighting more and more problems in the future.  I did so well on FOLFOX + avastin that I was completely unprepared for FOLFIRI.  It has been 8 days since my last infusion and I am still only about 75% back to "normal" (how I felt while on FOLFOX or just 5FU + avastin).  Reading about all the great folks on here that are passing has really had a bad effect on me.  I find it harder and harder to sign on and read posts.


Trapbear's picture
Posts: 109
Joined: Sep 2009

HI Tedd,

So sorry you are having such a rough time on Folfiri.  My husband just finished 4 treatments, lots of nausea and some diarrhea.  His oncologist usually has him do two months of folfiri to calm his lung and liver tumors down, then a few months of just 5FU and avastin to recover.  I know this sucks and hope that they can get you the right meds to control the nausea.  It took Chrisopher's doctors a while to find the perfect regimen to control nausea.  I hope things get better for you soon.




Posts: 1170
Joined: Sep 2012

Hi Tedd.  I feel the exact same way about Steve's situation.  It is getting harder and harder.  He did so well on Folfiri and avastin.  I am not sure Folfox is doing it.  After two sessions his ALP is still rising.  Bilirubin is slightly high.  Urine is dark yellow.  Very tired.  No appetite.  I worry that his best days are behind him too.  Am also discouraged and sad by all the recent loss here at CSN.  I really hope things improve for you soon.  It seems to be that the K RAS mutants struggle more the the wild types.  Steve went for a biopsy Friday.  I am expecting hear he also has the braf.  Life used to be so simple.

Posts: 1271
Joined: Apr 2012

I have been NED for three years, but still know I had cancer.  According to my Oncologist, when reattached so close to my anus. it sort of creates a plug.  Thus I experience constipation for the or more days and then the plug beakes loose and I have diarrhea.  Lomotil  controls the diarrhea and the cycle begins again. Not the best of worlds but livable.  Good luck to you 

Coloncancerblows's picture
Posts: 296
Joined: Feb 2013

I have had constipation the whole time on Folfox.  I take 1 or 2 Senacot pills every night with water and it has helped tremendously.  My surgeon told me all fruits that start with a P help with constipation (prunes, pears, peaches, pineapple).  Hope you get some relief.

renw's picture
Posts: 282
Joined: Jan 2013

Sorry to hear that you are having such a hard time.


FYI: I started few new things last month in germany that look like may be working. I'll know for sure next month. If it works out, it may he something that you could try.

Posts: 1170
Joined: Sep 2012

Hi Ren.  I've noticed your last several blog entries have seemed relatively positive.  If anybody is due for some good news, it is you.  Anxious to hear about your next scan results.  Glad things are turning around for you.  

Posts: 66
Joined: May 2013

My mom has had the worst bouts of constipation with the Folfiri. We have a regimine of 3 colace a day and a cap of miralax. That seems to help her. When she does not take that regimine she has lots of pain. Hope this helps.



renw's picture
Posts: 282
Joined: Jan 2013

When I had severe constipation, an enama would always help. Did you know that you can get them done through the colostomy as well? It may be a solution if things get bad.

Posts: 1961
Joined: Aug 2003

Took me a while to work out that the anti-nausea meds they were giving me together with the chemo were causing severe constipation. Now I use minimal (one pill, one night). I'm lucky with the nausea.Then it's straight on to metamucil and/or prune juice to undo the effect! It's a delicate balance, for me...


tachilders's picture
Posts: 313
Joined: Jun 2012

Just an update to my previous post.  I had 3L of fluid removed prior to my last FOLFIRI + avastin dose, and they reduced the irinotecan to 60% of a mormal dose.  MUCH better with regard to side effects.  I also stayed on top of the nausea meds (rotating compazine and zofran every 3 hours) and avoided any vomiting.  No diarrhea, but some slight constipation that didn't require any intervention.  Next time I will probably take some Senokot S if I need some help with constipation as it worked pretty well the first time I took it and didn't get me too loose.  I'll probably go up to a 70% dose next time (August 14th, 2 days before my 47th B-day) and see how that goes.  Still fighting a lot of fatigue and loss of appetite for the first week after treatment, but the 60% dose was bearable.  Still likely have a lot to learn with this regimen.  Thanks to all for your advice and well wishes. 


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