CancerCompass message board discussion started by food guy on 12/4/2007 http://www.cancercompass.com/message-board/message/all,18613,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello,I enjoyed reading the note and responses and I appreciate all of you for responding so that we can all learn more about our illnesses form your experiences. Personally, I have had difficulty finding information regarding the recovery from Rectal Surgery in regard to the effects on the "re-education" of the intestines and the much smaller rectum. I have had Radiation and Chemo in April, rectal surgery in July with a temprory ileostomy and I had the temporary ilestomy reversed on October 30. I will have my last treatment of Folfox later this week and have now been having some difficulty getting my bowels in "re-educated". My doctor has told me that it will take 6 months to a year to accomplish this. After a year I will have to accept whatever shape that my bowels are in at that time. I have been relying upon Immodium and Metamusil, when I can due to the effects of Folfox but I cannot find any information as to what to expect or if there is anything that I can do to help or perhaps some things that I should not do.  I have been watching my diet by staying away from high Fiber and highly spiced items which is easier since the Chemo has made protein my choice of foods. I cannot wait for the Chemo to end so that eventually I can enjoy my favorite fresh fruits and fresh vegetables.I realize that we are all different and consequently the recoveries all are different but there must be some similarities. Am I totally off base in this presumption.I would appreciate hearing form anyone on this question! Thanks you!  food guy Tue, 04 Dec 2007 00:00:00 GMT  On 12/4/2007 food guy wrote:Hello,I enjoyed reading the note and responses and I appreciate all of you for responding so that we can all learn more about our illnesses form your experiences. Personally, I have had difficulty finding information regarding the recovery from Rectal Surgery in regard to the effects on the "re-education" of the intestines and the much smaller rectum. I have had Radiation and Chemo in April, rectal surgery in July with a temprory ileostomy and I had the temporary ilestomy reversed on October 30. I will have my last treatment of Folfox later this week and have now been having some difficulty getting my bowels in "re-educated". My doctor has told me that it will take 6 months to a year to accomplish this. After a year I will have to accept whatever shape that my bowels are in at that time. I have been relying upon Immodium and Metamusil, when I can due to the effects of Folfox but I cannot find any information as to what to expect or if there is anything that I can do to help or perhaps some things that I should not do.  I have been watching my diet by staying away from high Fiber and highly spiced items which is easier since the Chemo has made protein my choice of foods. I cannot wait for the Chemo to end so that eventually I can enjoy my favorite fresh fruits and fresh vegetables.I realize that we are all different and consequently the recoveries all are different but there must be some similarities. Am I totally off base in this presumption.I would appreciate hearing form anyone on this question! Thanks you! I am sorry that I cannot fully tell you what to expect. I had a transanal excision for my rectal cancer so the experience was nowhere near the same.  However, I can help with a few things.  First of all, like you, I had radiation.  That by itself can screw up the intestines, unfortunately for quite a long time in some people.  If you had a lot of difficulty with diarrhea during chemoradiation and it didn't go away between the end of treatment and the surgery (which if I figured correctly from your post was a few months) you may have some permanent damage from the radiation.  One of the things that I did during treatment and for a little while afterwards was to take probiotics.  Normally, I am not a health food/supplement kind of a person, but it made logical sense to me that during radiation and then later during chemo, the good bacteria in my gut was being killed off by the treatment.  Much like happens during long periods on antiobiotics, I realized that a lot of the diarrhea was due to the absence of the good bacteria in my intestinal tract.  I know that docs always tell you to eat a lot of yogurt to replace this, but I just don't like yogurt THAT much.  So I started taking lactobacillus pills.  Verified this with my onc and he said it certainly wouldn't hurt anything (either during chemo or radiation) so I gave it a try.  I am happy to report that I saw a major difference with it.  It certainly is worth a try.  It may not solve every problem but I do think that it will help. Also, I had a friend who was diagnosed last December (actually one year this week) with stage I rectal cancer.  She underwent a radical resection and lost 2/3 of her rectum.  (No radiation).  Her bowel movements were quite irregular for the first 2-3 months and over the next few months afterwards, she did manage to "train" her intestines.  I talk to her quite frequently and she has told me that she just has to be careful about a few things that she eats (popcorn is one) but otherwise, coming up on her one year (one year for surgery in January) mark, she has settled into her new "normal"  While she will never be down to 1-2 BMs per day, she has settled into a routine of about 4-5, lesser volume movements in a day.  Diarrhea is gone as aare the urgent bowel movements.  However, because such a large portion of her rectum was removed, she does not have the capacity to store stool so she has more frequent bm with less quantity. I would also suggest googling "radiation proctitis" to see if you can find any information on tips to help with that.  While you might not have even most of the symptoms, you can find out a lot of information on potential problem solving things to do. Sorry I couldn't be of more help. Jaynee soccermom Tue, 04 Dec 2007 00:00:00 GMT Wow Jaynee you were a big help. Thank you for the information regarding your experience and your friends experiance. Thank you so much!!!! food guy Tue, 04 Dec 2007 00:00:00 GMT I'm a rectal cancer survivor, more than two years now, and have radiation proctitis. LIFE is good, but bowel movements are frequent, and you just have to get used to the "new normal".I NEVER stay home, but I have certain strategies that work for me.Find the bathroom in any environment as soon as you enter the new area, and always know where it is.Take Immodium proactively (before you have a problem) and it removes some of the excess water from your intestines that can't be easily removed now that the rectal area is less.My surgeon told me this, and it WORKS pretty well.  I take a half dose an hour before going out to dinner with friends.If you are going to be doing something (like kayaking, I'm an avid kayaker, and went on a Caribbean cruise for ten days less than four months after my surgery, and I was STILL on oral chemo during this time.)... anyway, if you are doing something active swimming, running, kayaking, etc., and won't have access to a bathroom, don't eat for a few hours before you go.  On the cruise, I ate breakfast, and dinner and skipped lunch most of the time.  I'd have a half of healthy granola bar, or something, to keep from being hungry, but not enough to trigger a trip to the restroom/bathroom.Keep track of what you can't eat without triggering multiple bowel movements, and then only eat that late at night, or when you know you aren't going out (if you crave it). Soon, you will avoid anything that gives you problems because it's not worth it most of the time.You can sometimes gently reintroduce a food to get your system used to it.  At first caffeine gave me problems, but I slowly got my body acclimated to coffee again.  I'd start with a 1/3 cup, then increased.  Now I can drink two large cups at a time and not have problems.  However, if I add chocolate to expresso... oops... watch out.  Even that's too much caffeine for me...Small portions of everything help.  The less in your system, the easier it is to manage.Hope these tips help. You need to figure out what works for you.  It's taken two years to get it under control (somewhat), but LIFE IS STILL GOOD, and I don't avoid going out. I live my life! Hope you can, too! Susan_b_anthony Thu, 06 Dec 2007 00:00:00 GMT