Living without a rectum

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Living without a rectum

by dmcfadye on Mon Jun 05, 2017 04:04 PM

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Rectal cancer, chemo/radiaton,surgery, chemo again,lost my rectum, had a bag for nine months then reversal, tried to go back to work, lasted five months, could not hack it. Afraid to go out much. I'm confused, don't know whether I'm constipated or have diareha sometimes. I go constantly, ( 20 times a day sometimes) but not much. ( it hurts) Hard to get rest or feel relaxed. I use immodium but sometimes think a laxative might be more effective (get it over with) Any advice, suggestions about diet etc.? Actually any advice that might improve my quality of life, I'm not doing very well with this.

RE: Living without a rectum

by hexstring on Fri Jun 16, 2017 08:27 PM

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New to the forum. Hello! You (and I) are suffering from "lower anterior resection syndrome". My bag came off a little over a year ago and I've suffered almost identical issues. Number one suggestion: get wet wipes. They're much easier on the anus. I've tried lots of things and nothing has worked well. What's worked best is taking Imodium for two days to completely stop popping, and on the third day cleaning out with Milk of Magnesia. This worked great until I started building a torerance to Imodium. I just resently discovered that thoroughly cleaning out allows me to go most of the two days poop free without taking Imodium. If I get my bowels really evacuated it takes two days for it work its way to my anus. I have much more add but gotta go for now.

RE: Living without a rectum

by Tracyg860 on Tue Aug 01, 2017 03:31 AM

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I am sorry to hear about your situation! Though, it is so familiar! I am 4 years out from treatment and surgery! Nothing has changed! I feel like I live around my issues rather than just living! 

I can not live a normal life! So frustrating! I wish, I had good news! Every day is a challenge...and night's are the worst! It can be hours spent in the bathroom..as Everyone else sleeps!

Hoping they stop making people survivors without answers! ???? 

RE: Living without a rectum

by Chasbo on Sun Oct 29, 2017 11:16 AM

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Hi I just joined the forum not sure where to start but nearly 2 years into this adventure .Knew I had rectal CA kept working stubborn .Finally went to docs.Rx rectal but scan revealed separate CA on left kidnet. Startedd rad and chemo April 2016 July had left kidney removed great young Asian doctor Aug 5 had rectum and 2 feet of colon removed.I turned 65 iat this point and was able to retire and concentrate on my recovery. Started Xeloda and Oxaliplatin  at this time tough thru the winter love to walk my dogs feet hands and face feel numb and frozen After chemo my on Co told me you are very lucky until 6 month scan showed Mets to my liver and less to my lungs.@ months ago started f4u with avastin and hoping the Lord has good time for me but point in hand I've never enjoyed life as much as now.Every day is a blessing my family and friends and their outpouring of love and support have been outstanding I laugh all the time my 60's tunes often make me cry but life and every day is good to me.They say you attitude is great. Saw my Mom pass in agony from CA 1975 was broken and terrified of the sickness.But all friends family family doctors and nurses have made the best of a bad situation.I should join a support group but just wanted to vent and XpressMusic my felling at this point of my journey. Sorry I'm so long winded but all best wishes to you and be strong never lose faith. BLESS YOU

RE: Living without a rectum

by CanadianBear on Sun Feb 11, 2018 03:18 AM

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I am 1 year and 5 months out of ielostomy surgery and have found there are many stages to living without your rectum. You need to be patient. It keeps getting better. The biggest thing I can suggest to all is to get a bidet wand that you can connect to your toilet and a portable bidet wand for travelling. It is a godsend for your behind as you don’t have to continuously wipe. You will also save a alot of toilet tissue. Always have wet wipes and baby bum cream are also helpful. Eating very small meals throughout the day. Eating foods that are binders (bananas, cheese, pasta, potatoes etc) early in the day (slows the system) and then switching to more fiber based meals in the evening. I also have bran cereal sometime before bedtime. I found from the early stages I went a lot and couldn’t eat red meat, cheeses, or anything deep fried. As time went on I have discovered you can eat these foods (within reason). I now enjoy pizza, burgers and fries occasionally. I usually go to the bathroom three times a day now. That might three visits to the bathroom within a short time period. That counts as one movement. Get plenty of exercise (it tires you out to sleep). The more you can relax the more your colon will use the sympathetic nerves which is a good thing. I still have bad days here and there and have to accept that.

RE: Living without a rectum

by Boslittle on Thu Feb 22, 2018 10:04 PM

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Hello, I too am a survivor and I have been dealing with this issue since my reversal in 2013. I had accidents all of the time and to be honest I can still have explosive issues if I have had too much fruit. I eat alot of cheese, potaotes mostly stuff that is not spicey or things I believe would be easily digested. It gets better but like everyone else says it takes time and I believe watching your diet.  I am back to work and most days I can live pretty normally . I have cluster issues about three times a week and ususally spend some time in the bathroom in the evening after I eat dinner. I take imodium about twice a week when the stool gets to loose. Hang in there you will get to a new "normal"  you will have accidents and all I can say is learn to laugh at yourself and keep going. You can't change a bad day all you can do is wake up the next day and see how your body will be . There is no way you will ever be the same again all you can do is live everyday new. Prayers to you that you can find a way to learn your body and watch for the signs of activity.  

RE: Living without a rectum

by sfar56 on Fri Jun 29, 2018 12:47 PM

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My husband has been through everything you have and had his reversal in 2016.  He too has been discouraged and we hardly go anywhere in the evening which has really limited our socializing with friends, etc.  A couple of weeks ago I bought some mixed nuts and he indulged at night and has found that eating a handfull or two has actually helped him.  It could be coincidence, but he is going to keep eating them for awhile and see.  Since his surgery he has always avoided fiberous foods, but maybe it is key to bulking his stool and giving him more control.  

RE: Living without a rectum

by CanadianBear on Thu Jul 05, 2018 01:33 PM

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Everyones body is different. Fiber is very important for me to keep the system going. I eat more fiber than the usual person would. I usually eat 4 smaller meals a day instead of three with a mix of protein and fiber. In the evening I have bran and granola cereal, a handful of trail mix (cranberries) and a handful of peanuts. This seems to help my system clean out more in the morning. 

I find evenings are the worst for me as well. My friends are very supportive and if I am out with them in the evening they understand. 

RE: Living without a rectum

by CanadianBear on Thu Jul 05, 2018 07:43 PM

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Another note about diet. Make sure you keep yourself hydrated especially if you tend to be constipated. I stay away from laxatives and immodium as they are not natural.
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