Rectal Radiation and Nutrition: Anyone have plant-based diet advice?

Posted by amariewilkinson @amariewilkinson, Apr 27, 2022

Hello,
Long story short, I had a large polyp discovered and resected from the rectum at age 41 last year. After finding 2 cancers (main worrisome one being a tiny Neuroendocrine Carcinoma) , I went through 5 weeks of pelvic and rectal radiation plus 4 rounds of chemotherapy. Radiation plus the resected area has left me with quite a lot of pain/dietary issues etc. 12 weeks later and I’m still unable to eat much fiber with severe ulcerations and narrowing of the rectum. Anyone else going through anything similar and anyone have dietary advice? I really wanted to follow a whole food/plant based diet to help my body fight any possible remaining cancer but now I can’t since hardly any fiber seems to tear me up and cause so much pain! A bland soft diet is almost all I can handle. Help and thank you!

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@amariewilkinson

Yes, I agree trial and error and keeping a food journal is only thing to help and try. My issue is opposite most it seems, as I rarely have any issues with constipation and mainly struggle with a thicker and/or looser stool (not diarrhea). So, i have a very narrowed rectum that’ll have to be stretched often and they want me taking fiber pills to keep the stool bulked so it’ll open that narrowed part up, but it only takes very little fiber for me and then I end up with accidents or almost accidents due to the stool being loser as well as the radiation and everything having messed with the sphincter down there. I’m hoping to eventually find some physical therapy to help me not end up with a permanent colostomy bag! Yikes! I think you’re right with a very customized diet! Hoping you continue to feel better and recover!

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Am glad I have ileostomy!

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Rectal cancer stage 3! Had tumor removed! Reconnection failed 6 months later! Had 6 weeks chemo and radiation to remove original tumor! It failed to reduce it! Got colostomy! Numerous large polyps blocking remaining colon! My surgeon suggested removing last part of colon! My end ileostomy is doing great! Eat everything! I steam all vegetables! Good luck!

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What has really helped me is a small steamer for fresh vegetables! I have permanent ileostomy and eat everything! Food is really soft and good and healthy! Good luck!

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@amariewilkinson

Thank you, yes, they don’t know what it is but it did show up on the MRI as a mass so.. 🤷‍♀️
They’ll only know more when they get in there and cut yet again to get biopsies. They just didn’t know what to tell me it could be. Haven’t had anything inside the lining before that isn’t raised above the lining so not sure what to expect but being less than 4 months out of radiation makes me hope it only has something to do with that possibly 🤷‍♀️

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Hello @amariewilkinson

I've been thinking about you and recall that you were going to have a EUS. Has this been done? I hope that you got some helpful information

Will you post again with an update, when it is convenient for you?

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@hopeful33250

Hello @amariewilkinson

I've been thinking about you and recall that you were going to have a EUS. Has this been done? I hope that you got some helpful information

Will you post again with an update, when it is convenient for you?

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Hello. Yes, I ended up with 2 EUSs since the first one they didn’t take biopsies and the second they did. Thankfully they found normal tissue in the biopsies and I seem to still be trying to heal. The sad thing is that I had just gotten to where I could eat normal again but after the biopsies, I went back to having issues and still do. I think I’ll have to put my foot down better next time because every time I am almost healed, another treatment or check leaves my quality of life worse off. They’re wanting me to return in august I believe but can’t imagine doing more biopsies then already since I’m back to having issues plus it feels they’re leading me to have to have a permanent colostomy simply from all the procedures. Not feeling that it’s worth it! Maybe I’ll request checks without biopsies at least for the near future.

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@amariewilkinson

Hello. Yes, I ended up with 2 EUSs since the first one they didn’t take biopsies and the second they did. Thankfully they found normal tissue in the biopsies and I seem to still be trying to heal. The sad thing is that I had just gotten to where I could eat normal again but after the biopsies, I went back to having issues and still do. I think I’ll have to put my foot down better next time because every time I am almost healed, another treatment or check leaves my quality of life worse off. They’re wanting me to return in august I believe but can’t imagine doing more biopsies then already since I’m back to having issues plus it feels they’re leading me to have to have a permanent colostomy simply from all the procedures. Not feeling that it’s worth it! Maybe I’ll request checks without biopsies at least for the near future.

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Thanks for the update, @amariewilkinson,

I am glad to hear that your biopsies showed normal tissue. How difficult that you are bothered again with problems eating. I'm sure that is discouraging.

I hope that you are able to make a decision at your August appointment that works well for you. I can understand your hesitancy to have more biopsies that lead to problems eating.

Do you lose weight as a result of these procedures?

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@hopeful33250

Thanks for the update, @amariewilkinson,

I am glad to hear that your biopsies showed normal tissue. How difficult that you are bothered again with problems eating. I'm sure that is discouraging.

I hope that you are able to make a decision at your August appointment that works well for you. I can understand your hesitancy to have more biopsies that lead to problems eating.

Do you lose weight as a result of these procedures?

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Thank you for asking! It’s more than just trouble eating…pain etc but I’m hopeful I’ll come out of this again too at some point. Not sure why it’s taking forever for my body to heal down there 🤷‍♀️
but I’m sure radiation has most to do with it. Since last Sept. 30th I did drop 35 lbs and although that doesn’t put me underweight yet, it’s closer to doing so. I’m trying to eat well despite what it does to me multiple times a day. Prayers it goes back to “normal” soon. Thank you!

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@amariewilkinson

Thank you for asking! It’s more than just trouble eating…pain etc but I’m hopeful I’ll come out of this again too at some point. Not sure why it’s taking forever for my body to heal down there 🤷‍♀️
but I’m sure radiation has most to do with it. Since last Sept. 30th I did drop 35 lbs and although that doesn’t put me underweight yet, it’s closer to doing so. I’m trying to eat well despite what it does to me multiple times a day. Prayers it goes back to “normal” soon. Thank you!

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I hope that you continue to post and share with me how you are progressing, @amariewilkinson. This sounds like a difficult journey. Please know that you are not alone. I've had several surgeries of the upper digestive tract and I do understand the difficulties that come with eating afterwards.

Connect has many "listening ears" so keep sharing.

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@hopeful33250

Hello @amariewilkinson,

I can understand your distress at thinking about dealing with another issue after just finishing treatment. I have had three surgeries for carcinoids of the upper digestive tract and I understand how difficult it is to face yet another possible problem.

It sounds to me as if it has not yet been determined to be another cancer lesion but perhaps scar tissue. Is that correct?

I am glad to hear that you are being seen at Mayo. I would encourage you to have a conversation with your medical team and tell them your feelings about another biopsy. It is definitely worth a conversation.

Can you try that?

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Question: My mother has a tumor in her rectum. She is 63 years old. Question: What type of food is she allowed specifically? I want to know the types of foods.

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@hhsn12211

Question: My mother has a tumor in her rectum. She is 63 years old. Question: What type of food is she allowed specifically? I want to know the types of foods.

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Usually, one keeps eating one's regular diet. If your mother eats a lot of read meat, you should consider reducing the amount and prefer lean chicken and fish, as well as beans and lentils.

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