CancerCompass message board discussion started by Kaliq on 1/29/2007 http://www.cancercompass.com/message-board/message/all,9177,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello everyone..Hello everyone..I have just completed all my treatments for rectal cancer stage III. I have gone through Chemo/Radiation, Surgery, and reversal of stoma. My Doctor has told me after surgery was complete, “no cancer was found, either in tumor or lymph nodes“. However, I have been having pains in my left leg due to nerve damage. I was told to take Neurontin 600 mg. I take 2 tbs in the morning and two when I go to bed. That seem to be working for now. My real problem is with non stop bowl movements. I must have at least 10- 20 a day. I was wondering If anyone else had this problem after reversal of stoma? I was told to take Imodium before I ate a full meal. And 1 tbl spoon of Metamucil in the mourning. This solution does not seem to work for me. Does anyone have a better remedy ? Sometime I am up all night running to the bath room. Kaliq Mon, 29 Jan 2007 00:00:00 GMT Have you been on an antibiotics? If so, you may have what is called Clostridium Difficile (C-diff). You may want to talk to your doctor about it. It's a simple lab test, you just take a stool sample into the lab to be tested. There is also meds my mom is on and I'm sorry I don't know the name of it off the top of my head. I'll ask her. But it slows down the movement of  your bowel. Maybe that will help you. Keep drinking water or you will get dehydrated. Best of luck! Linb1414 Sat, 17 Feb 2007 00:00:00 GMT Hi,I also had surgery, chemo and radiation and temporary ileostomy for stage 3 rectal cancer. (3 years ago).  I had sometimes 20 bowel movements per day after my reversal.  That continued for approximately 1 year.  I was taking up to 13 Lomotil per day.  This helped me and did slow down the bowel movements at times.  After a year or so, I weaned myself off the Lomotil.   3 years later, I go from 6 - 9 times per day.  Some days less, some more.  Sometimes certain spicy foods cause more movements.    When I am going out to eat and I know I will be eating foods that might cause problems, I do take 1-2 Lomotil.  Immodium never worked for me.  I also take Nu-Lev.  Which is like the Lomotil but you put it under your tongue and it works faster.  Ask your doctor about these medications.  Thank goodness, I was never bothered during the night.  For some reason, my bowel slept along with me!  smile  Don't worry, it will get better.  Honest.  We will probably not have our plumbing work like it used to.  I am okay with the 6 a day.  Take care and good luck.  Annette Drmrgirl47 Tue, 20 Feb 2007 00:00:00 GMT I would like to thank everyone that has replied. Just to give you a little update.I recently had a minor surgical procedure to dilate the anal. While having this procedure.The Doctor took another look at my entire colon. According to him, my colon is cancer free. I found out that during my original surgery, my rectum was removed. My colon was attached to my sphincter/anus. The purpose of the dilation was to allow my stool to gather as storage in the new reattached rectum. That would slow down the amount of times I would need to defecate per day. It has only been a week, but I think this might help. I will report back in a few week and let to all know. Kaliq Sun, 25 Feb 2007 00:00:00 GMT I had my illeostomy reversed and had the same bowel movement problems you have. I still seem to go a lot if I eat the wrong foods. I think everyone is a little different in what the bowel can tolearte and for me it was trial and erorr. Rice seems to work well for slowing things down for me. As you have mentioned, metamucil adds bulk so you don't have many small movements. I hope the new surgery helps.After my ileostomy reversal I had a liver resection and was declared cancer free. I was estatic and worry free. I thought I had beat the beast. Four months later a scan showed that the rectal cancer was back and had mets to liver and lungs. I deeply regret that I didn't watch my diet or lifestyle habits during my 'cancer free' four months. I have incredible guilt that I caused it to recur by not becoming vegitarian and excercising. I don't know your situation but just for the sake of your sanity, I hope you live an incredibly healthy lifestyle going forward. Chicagomike Wed, 28 Feb 2007 00:00:00 GMT I have  had the same problem.  Metamucil made things worse because it caused gas and the gas set off the movements.  I tried Citrocil 3 time per day and it made a big difference.  When I go to work I found that immodium didn't help too much.  I take Hydromet which is used for other things, but it does usually stop the bowel movements until I get home at 5.Did you find that the bowel movements are very painful on the skin?  I did and  I don't try to wash my rear end aftter each time, but clean it and keep it dry.  Diet helps too. I avoid food that produce gas and it seems to work.  All in all though, I still have periods of excessive bowel movements and hope someone else may have an idea.  Take care.  Dabblerz Fri, 02 Mar 2007 00:00:00 GMT  On 2/20/2007 Drmrgirl47 wrote:Hi,I also had surgery, chemo and radiation and temporary ileostomy for stage 3 rectal cancer. (3 years ago).  I had sometimes 20 bowel movements per day after my reversal.  That continued for approximately 1 year.  I was taking up to 13 Lomotil per day.  This helped me and did slow down the bowel movements at times.  After a year or so, I weaned myself off the Lomotil.   3 years later, I go from 6 - 9 times per day.  Some days less, some more.  Sometimes certain spicy foods cause more movements.    When I am going out to eat and I know I will be eating foods that might cause problems, I do take 1-2 Lomotil.  Immodium never worked for me.  I also take Nu-Lev.  Which is like the Lomotil but you put it under your tongue and it works faster.  Ask your doctor about these medications.  Thank goodness, I was never bothered during the night.  For some reason, my bowel slept along with me!  smile  Don't worry, it will get better.  Honest.  We will probably not have our plumbing work like it used to.  I am okay with the 6 a day.  Take care and good luck.  AnnetteHi my name is christina, my mother had rectal cancer and also went through chemo and radiation, She is now in remission, but is haveing alot of side effects. She has tried limotil and tons of other things, like watching what she eats and so forth. But nothing seems to be working for her. If you know of anything else that might help her i would be very thankyou. You can e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----  thank you. hope to here from you soon!!! Chrissy_87 Mon, 19 Mar 2007 00:00:00 GMT Hello....I hope this will be of help to your Mom. Very often when we take antibiotics or other substances(chemo etc.) that can alter one's body terrain the "good" bacteria that live in our intestines and bowels can be badly affected and even killed off. There is a natural substance called acidopholous that will replace the good flora and should be a great help with the bowel problem. You could do a web search on it if you are unfamiliar. Here is just one http://home.intekom.com/jly2/ttmacidoph.htm Blessings to you both Shemay Hi my name is christina, my mother had rectal cancer and also went through chemo and radiation, She is now in remission, but is haveing alot of side effects. She has tried limotil and tons of other things, like watching what she eats and so forth. But nothing seems to be working for her. If you know of anything else that might help her i would be very thankyou. You can e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----thank you. hope to here from you soon!!! -----end quote------ Shemay Mon, 19 Mar 2007 00:00:00 GMT I had the same problem with bacteria after chemo, radiation, surgery and more chemo for rectal cancer. Here are some tips that helped me...1. Yes, acidophilus helps because it promotes good (probiotic) bacteria in the 'gut'. A good food source of probiotic bacteria is yogurt, especially the brands that contain more than one type of "good" bacteria. However,  I avoid the brand that advertises on TV that it contains the "immunitas" bacteria... because if you don't know it... the name "immunitas" is a made up word. It irritates me that the company picks a name that sounds like "immunity" just to sell more of their product. (How stupid do they think people are, anyway?)  So I use all the brands with multiple probiotics.  Using this strategy 2. Also, avoiding caffeine seems to help (avoiding caffeinated coffee, chocolate, cola drinks, or any soda with added caffeine) but tea doesn't seem to have enough caffeine to bother me... everyone is different.  To find out what bothered my gastrointestinal system, and to avoid diarrhea, I only added one new food at a time (and then when i was bothered, I could avoid that food).  However, I like to eat healthy food, so I am not going to give up things like salad, vegetables, fruits, etc.  Oh... it helps NOT to drink concentrated fruit drinks, even those without sugar if they are from concentrates.  Always try to find fruit drinks that have not been reconstituted from concentrates of fruit juices.3. As for foods, yes, rice is good, 4. also bananas (and as fruit they have lots of vitamins, too), 5. applesause with NO or low sugar (also a healthy fruit), and 6. toast, especially any kind that doesn't have seeds or nuts in the bread. Whole grain works fine as long as there aren't actual seeds sticking out in the bread... the wheat bran and wheat germ don't seem to bother.Using the above tips, plus guided relaxation... I have been able to decrease my medication from 8 or more Immodium a day to 2 or less a day. Once in a while, if I eat foods that bother me... I sometimes have to take 3 a day. However, I don't have to stay home near a bathroom. My life is not compromised.  I can go kayaking, and swimming without fear of having sudden diarrhea. However, this has taken more than a year to resolve.  When I wanted to be involved in activities away from home in the early months following my surgery, I just avoided lunch.  I ate breakfast, drank some Gatorade, or similar liquid for lunch, or had a very small scack bar... and then ate a normal dinner.  In this way I was able to take a cruise with my husband and grandchildren and snorkel, snuba, and kayak only four months after my surgery.  (I was still on chemo at that time, but my life was GOOD!) It was worth going without lunch to live a normal life! I hope some of my tips help you.  Everyone is different.  Susan B. Susan_b_anthony Thu, 22 Mar 2007 00:00:00 GMT  On 3/22/2007 Susan_b_anthony wrote:I had the same problem with bacteria after chemo, radiation, surgery and more chemo for rectal cancer. Here are some tips that helped me...1. Yes, acidophilus helps because it promotes good (probiotic) bacteria in the 'gut'. A good food source of probiotic bacteria is yogurt, especially the brands that contain more than one type of "good" bacteria. However,  I avoid the brand that advertises on TV that it contains the "immunitas" bacteria... because if you don't know it... the name "immunitas" is a made up word. It irritates me that the company picks a name that sounds like "immunity" just to sell more of their product. (How stupid do they think people are, anyway?)  So I use all the brands with multiple probiotics.  Using this strategy 2. Also, avoiding caffeine seems to help (avoiding caffeinated coffee, chocolate, cola drinks, or any soda with added caffeine) but tea doesn't seem to have enough caffeine to bother me... everyone is different.  To find out what bothered my gastrointestinal system, and to avoid diarrhea, I only added one new food at a time (and then when i was bothered, I could avoid that food).  However, I like to eat healthy food, so I am not going to give up things like salad, vegetables, fruits, etc.  Oh... it helps NOT to drink concentrated fruit drinks, even those without sugar if they are from concentrates.  Always try to find fruit drinks that have not been reconstituted from concentrates of fruit juices.3. As for foods, yes, rice is good, 4. also bananas (and as fruit they have lots of vitamins, too), 5. applesause with NO or low sugar (also a healthy fruit), and 6. toast, especially any kind that doesn't have seeds or nuts in the bread. Whole grain works fine as long as there aren't actual seeds sticking out in the bread... the wheat bran and wheat germ don't seem to bother.Using the above tips, plus guided relaxation... I have been able to decrease my medication from 8 or more Immodium a day to 2 or less a day. Once in a while, if I eat foods that bother me... I sometimes have to take 3 a day. However, I don't have to stay home near a bathroom. My life is not compromised.  I can go kayaking, and swimming without fear of having sudden diarrhea. However, this has taken more than a year to resolve.  When I wanted to be involved in activities away from home in the early months following my surgery, I just avoided lunch.  I ate breakfast, drank some Gatorade, or similar liquid for lunch, or had a very small scack bar... and then ate a normal dinner.  In this way I was able to take a cruise with my husband and grandchildren and snorkel, snuba, and kayak only four months after my surgery.  (I was still on chemo at that time, but my life was GOOD!) It was worth going without lunch to live a normal life! I hope some of my tips help you.  Everyone is different.  Susan B.Hi Susan - I'm new to the website and am having my ileostomy reversal tomorrow.  I would like to use you as a source of inspiration.  My surgeon has not informed me that the problems will continue.  I was so excited to get my bag off that I didn't really ask.  I has a lot of problems with my surgery....colon resection for cancer....I developed an infection.  So this surgery has seemed like it would be a breeze so I can get chemo started but after reading this website it appears that I still have a long road ahead before I feel like I have a live again????  I don't want that...I'm 48 and want to have my life back:)  So I read yours and it seemed like there was hope...so I will focus on that.  Is it ok if I email you from time to time since you are about 5 months ahead of me:)??? - Tammy Tamboo Sun, 01 Apr 2007 00:00:00 GMT  On 3/19/2007 Shemay wrote:Hello....I hope this will be of help to your Mom. Very often when we take antibiotics or other substances(chemo etc.) that can alter one's body terrain the "good" bacteria that live in our intestines and bowels can be badly affected and even killed off. There is a natural substance called acidopholous that will replace the good flora and should be a great help with the bowel problem. You could do a web search on it if you are unfamiliar. Here is just one http://home.intekom.com/jly2/ttmacidoph.htm Blessings to you both Shemay Hi my name is christina, my mother had rectal cancer and also went through chemo and radiation, She is now in remission, but is haveing alot of side effects. She has tried limotil and tons of other things, like watching what she eats and so forth. But nothing seems to be working for her. If you know of anything else that might help her i would be very thankyou. You can e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----thank you. hope to here from you soon!!! -----end quote------ Hi, I hope your mother has had success in her battle with excessive bowl movements.  I am 3 months past my final chemo treatment after having rectal cancer, rectum removal, and resection.  By chance, I found that a pain reliever has helped me in my battle with excessive movements. I took Hydrocodone for pain and found out it succeeds about 90% of the time to stop the movements.  It is good enough to get me through work. Then I switched to Hydromet, which is the same thing except without the Tylenol that Hydrocodone has.  (Tylenol is not good for the liver when taken in large amounts).  Well, I've been on it for 6 months now with good results.  I take Immodium also even though it doesn't work well. It seems to thicken the stool, which helps a little.  I avoid dairy foods, except yogurt.  I avoid gas producing foods, which seems to stimulate movement. Hope this helps.  Let me know if it does.  Good luck. Ron   Dabblerz Thu, 12 Apr 2007 00:00:00 GMT Hi Ron,I read your message.  You are so right Hydrocodone stops the bowel and is very effective. I also took codiene in small amounts for several years. I am a survivor of 14 years. I had stage IV rectal cancer with 15 positive lymph nodes. I had a an ostomy, it prolapsed ( my intestines kept falling out of me) so I had to have it redone - back to the hospital the night I got home! I had a year of chemo, 6 weeks of raditation And then a reversal.They really didn't think I would make it. But I DID!I am writing now because after 14 years taking some kind of codiene or hydrocodone NY has instituted new "guidelines" that make it difficult for doctors to prescribe narcotics. My question is: What kind of doctor do you see that will prescribe this. Sloan Kettering has said they are not prescribing it anymore after I have been their patient for 6 years!!I am in tears every day. They are taking away my quality of life. I have two children. They have had a hard enough time growing up with a mom that couldn't do as much as other moms. (They were 2 & 3 year old when I was diagnosed.Any information would be really helpful.Thanks, Susan   Soozi Sat, 19 May 2007 00:00:00 GMT Hi,I had intestinal surgery for cancer about a year ago.  Have excessive BM.  I have used Questeran (expensive) and its a drink.The generic form is horrible!  Then my onc switched me to Tylenol 3, I'm down to 1/2 pill per day and its working pretty good. Would love to have everything work naturally and normally again without meds.  Eating lots of carrots really helps, also just purchased psyllium caps (suppose to help diarrhea or constipation) .  I think they are helping some. I have found that if something really irritates my intestines, adding a small amount of this food until my intestines adapts, works .  I love beans , spaghetti etc and have problem with gas on those, Beano works for that.  Glad I've found some people with similar problem.  A friend has similar problem (surgery, cancer etc) and has found Celiac disease is his problem, so gluten free food is his answer and is working.  don't know if I could handle the diet! Please keep me up to date on solutions! Thanks, Joanna  Joanna2 Sat, 19 May 2007 00:00:00 GMT They cut me off of Hydrocodone also.  But the doctor tried Hydromet.  She said it is the same thing but without the Tylonol.  Sometimes a tincture of opium is used.  It worked for me during radiation but after chemo it didn't/ Hope it helpsRon  Dabblerz Sat, 17 Nov 2007 00:00:00 GMT