Rectal Radiation and Nutrition: Anyone have plant-based diet advice?
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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Welcome @amariewilkinson. I can see where you have a challenging situation. You want to follow a healthy plant-based diet, but fiber is causing issues. I'd like to bring @pjebp @travelgirl @azcyclist2018 @lisag03 @tiss @annmac74 and @virgo1952 into this discussion in the hopes that they have some first-hand experiences and tips to share.
In the meantime, these related discussions might provide some insight:
– Rectal pain and diet post right hemicolectomy https://connect.mayoclinic.org/discussion/right-hemicolectomy-rectal-pain-and-diet/
– Dietary Changes Before and After Colon Cancer https://connect.mayoclinic.org/discussion/dietary-changes-before-and-after-colon-cancer/
– Appetite Satiety: Normal to feel full after a small amount of food? https://connect.mayoclinic.org/discussion/appetite-satiety/
Amarie, have you considered taking your questions to an oncology dietitian? Many cancer centers have specialists who deal with diet for cancer patients.
Wow. I am pretty much on daily fiber to keep my bowel happy. I had a colon resection three years ago. I lost 3feet of my colon, but was fortunate when chemo and/or radiation was not necessary. I put myself (after trying a lot of food plans) on a daily gentle laxative powder and fiber gummies before my main meal. This has kept me on track with regular bowel movements. I think Colleen has good advice. You may need a very customized diet to get the results you need/want, especially if you are wanting to remain using a plant based menu. Trial and error seems to the way if it. Good luck and use this site as a sounding board for ideas and questions. Sasha
Thank you for your help and response. I have already seen an dietician from oncology at mayo and keep trying things at home to see if they help. Keeping a food diary and pain diary may help eventually but it seems very random. I’m determined to heal with God’s help and will keep seeking advice at mayo. I just came here in hopes someone had a similar experience but think all our situations here are so unique.
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!
You are already ahead of many people who reach out to the connection group. It was a process for me too. Baby steps and small victories. This is the beauty of having a group or a person to talk with when you are researching ideas or solutions. I think for me it was diet, exercise and needed supplements/little helpers to reach a acceptable solution. You have a great plan and if you stay the course, you will get there. So, give yourself permission to be hopeful, grieve the loss of what was and move towards being the best you, you can be. You’ll read lots of stories about people’s wins. . For me, it gave me motivation to keep at it. Kind of like “there’s life after cancer” was my mantra 😄 And I had to remind myself of that. We are our emotions and thoughts. I’m happy I got to meet you and I’m there for you. sasha
Anyone have/had a NEC in Anal rectal area before? I’m in serious need of some support after coming back to MAYO again and learning they’ve discovered some other very tiny “mass” in the distal rectum underneath the lining of the rectal wall. They have no idea what it is and couldn’t even get a biopsy with an EUS I had yesterday. Now I’m staying in town longer for yet another EUS attempt to get a biopsy/biopsies of it while assessing the tissue real time to get adequate samples. I JUST finally got out of 3 months of misery and was starting to somewhat be able to eat normal again. How much is too much and when to say enough is enough with damaging more tissue to get more biopsies when it’s possible it could be only scar tissue 🤷♀️ – I’m less than 4 months done with chemo-radiation and there was nothing there after they cut it out last year. Any input helpful here. Thank you!
Oh @amariewilkinson, I can hear how despondent you're feeling getting this news that a new, albeit tiny mass, has been discovered in the distal rectum underneath the lining of the rectal wall. I'm bringing @hopeful33250 into this discussion. Like you, she has had multiple GI neuroendocrine tumors and knows what it is like to get that news just when you think you're getting back on your feet again.
You're in good hands with Mayo Clinic. Is it being suggestion that you get surgery or additional radiation?
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?
Thank you! I am set for another EUS procedure tomorrow and a backup plan for Thursday would be in my surgeon’s OR instead if they still can’t get to it. My anatomy is messed up due to the first resection surgery is why they’re saying they couldn’t get to it the first time last week. They aren’t recommending anything until they know something further but I’m sure the next thing my surgeon will say is have my bottom permanently removed with permanent colostomy bag. I’m 42 and have 3 very young kids to care for 😬
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 🤷♀️