35 year old living without a rectum

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35 year old living without a rectum

by RubyBrooke on Fri Nov 24, 2017 02:42 AM

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I was diagnosed with stage 3 cancer in June 2016 at the age of 33. I did the whole chemo/radiation, followed by surgery to remove tumor, my rectum, and placed with an illeostomy bag for 10 months. I recently underwent a reversal surgery in mid October 2017 and I am struggling with living in a bathroom now it feels. I just refuse to wear diapers as a single 35 year old and was wondering if I could get advice on how to deal with this. What foods help, routine changed etc..I feel my Dr kept me very in the dark about the life changing effects of this whole ordeal.. I have very little family support, basically no one to help me , and no faith in Western medicine to save a life and keep the quality in tact. I have a 12 yr. Old daughter and have lived through my own father's suicide so I refuse to leave her that way but some days I cry BC I feel backed into a corner and no good options. Any advice?

RE: 35 year old living without a rectum

by NeedAdvisr on Thu Nov 30, 2017 07:35 PM

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Hang in there!  I wear diapers and it isn't a problem.  You can wear the diapers under your underwear.  Your bowel movements should improve over time. 

RE: 35 year old living without a rectum

by Gmarquez04 on Mon Aug 06, 2018 12:56 AM

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Im a 36 yr old in the same situation as yours.   I just had my ileostomy reversal a week ago.   The last 2 days have not been very much fun.   Bowel movements 15 times a day.... any words of wisdom for a newbie??

RE: 35 year old living without a rectum

by Mweil on Mon Aug 06, 2018 04:03 PM

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It does get better,  just not as quickly as you'd like.  Look at bowelcanceruk.org.uk - lots of good info. 

 I saw a registered dietician who helped alot.  We discussed my problem  (diarrhea) and I was told to cut way back on fresh fruits and vegetables and avoid high fiber items like bran muffins,  etc.   I found that hard to do.

I take Metamucil almost daily (bulks the stool up), and keep immodium at home and at work for emergency use. 

I have to pay a LOT more attention to my diet now,  especially when I know I'll be traveling or hiking, etc. I'll wear a thin pad if I think I may have leakage that day. 

I also saw a pelvic floor physiotherapist...very helpful in learning exercises to control the pelvic floor. 

I had my illeostomy reversal surgery 4 years ago,  and some days still aren't that great. I have a bowel movement (s) twice a week now...kind of a pain to plan the day around when I know I'll be in the bathroom 5 or 6 times.

Try to be patient and kind to yourself.  Your body won't be the same,  but you'll figure it out...but it does take time.  And a few tears...

RE: 35 year old living without a rectum

by Gmarquez04 on Wed Aug 08, 2018 02:33 PM

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@Mweil, Thanks for your responce..and just as quickly as it came..it left!?...at least for now

On the 5 day after the illeostomy reversal i had 20 BMs in one day.  As I mentally prepared myself for Day 6, I was surprised that I only had 4 BMs on that day.  Even more surprised on Day 7 when I only had 1 BM. 

Now I'm just waiting patiently for what comes next.  I know for sure that more food is going in, than what is coming out....so I know its in there.

As I frantically tried to read every thread and post of rectal cancer survivors like myself, I took note of a few tips that I implemented immediately.  I started eating a probiotic yogurt drink in the morning and before bed.  I chose a few of the foods from the lowFODMAP Diet handbook and have kept my diet to only consist of toast, eggs, bananas, probiotic yogurt, brown rice, grilled chicken.  I took Immodium once and have it stashed in strategic places.  I am going to start introducing new foods in a few days...crossing my fingers for now. 

RE: 35 year old living without a rectum

by mikejoedog on Wed Sep 19, 2018 06:35 AM

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On Nov 24, 2017 2:42 AM RubyBrooke wrote:

I was diagnosed with stage 3 cancer in June 2016 at the age of 33. I did the whole chemo/radiation, followed by surgery to remove tumor, my rectum, and placed with an illeostomy bag for 10 months. I recently underwent a reversal surgery in mid October 2017 and I am struggling with living in a bathroom now it feels. I just refuse to wear diapers as a single 35 year old and was wondering if I could get advice on how to deal with this. What foods help, routine changed etc..I feel my Dr kept me very in the dark about the life changing effects of this whole ordeal.. I have very little family support, basically no one to help me , and no faith in Western medicine to save a life and keep the quality in tact. I have a 12 yr. Old daughter and have lived through my own father's suicide so I refuse to leave her that way but some days I cry BC I feel backed into a corner and no good options. Any advice?

Hang in there Ruby there is light at the end of the tunnel. I too went through the same ,was diagnosed with stage 3 rectal cancer had chemo radiation surgery , illeostomy had it for 18 months than a reversal had it for 2 years the worst time of my life, wearing a diaper was so embarrassing to me having accidents and didn't   know it until it was too late, believe me I know what you must be going through. The solution for me was to get a colostomy bag it gave me my life back to some extent , I can go out now without worrying   about having accidents and smelling ,at least with the colostomy bag you go and it does not smell. I would ask your doctor if you have that option.

RE: 35 year old living without a rectum

by CanadianBear on Thu Dec 06, 2018 04:30 PM

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You need to be patient. Things will get better in time. You need to keep a food diary. If you have diarrhea you need to eat more binding foods. If you are constipated more fiber. You need to do glute exercises to strengthen your butt muscles. Stay from alcohol. It will take up to two years for your insides to heal. You have a lot of inflammation. If you have to learn to live with accidents. Nothing to be ashamed of.

RE: 35 year old living without a rectum

by Norie73 on Sun Mar 17, 2019 08:37 PM

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I am so sorry that you and your child are going through this awful time with csncer. Have you talked to your doctor about using in and out cstherters? With this type of father you use it then remove it..

You may not be emptying your bladder when you urinate. With in and out catheter you might have better control over how much time you spend in the bathroom. 

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