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Rectal cancer at 36 - what am I supposed to eat?

JoanneW
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Hello

I am newly diagnosed with rectal cancer (2 colonoscopies, CT and MRI all done - just waiting to hear about whether it has spread and for a treatment plan). The low fibre diet has been really difficult for me and I’m feeling pretty miserable. I was kept on it between the two colonoscopies so I’ve been eating low fibre for about 2 weeks straight. If I eat at all I seem to get a lot of pain and feel immediately full/sick. I’m sure the tumour is causing a partial blockage and I’m looking for some advice about what I can eat while I’m waiting for the full diagnosis and plan. I tried calling my contact at the hospital but I missed her return call and I think she’s now gone for the day. I don’t know how long I expect to wait for a plan/surgery (if anyone knows how long this bit usually takes I would love to know!!) and I can’t seem to get the balance right between having some energy from food and being free of some of the tricky symptoms. I’d really like to be able to go out to distract myself etc but that seems impossible at the moment.

Thank you for listening to my many questions! 
Jo

  • Hi Jo.

    It's a difficult time ,waiting and in pain. 

    I've have been on low fibre diets many times , with yearly colonoscopies and digestive issues after a right hemicolectomy.  And yes its v boring and difficult.  So I resort to soups, chicken ,fish but add butter and teriake sauce and red wine !

    As to the wait for a plan mine progressed quickly as an emergency op but just keep calling - medical secretaries are your friend. 

  • Offline

    Am guessing it is your staging results you are waiting on. I got mine between Christmas & New Year so took almost a month which was a very long agonising time. It it Squamous Cell Carcinoma you have too?

    I would be telling you eat what is comfortable for you. High fibre does not suite my system either but little things like taking the peel off apples, having porridge instead of weetabix and not going mad on brown bread makes all the difference.

    You have come to the right place for support

    Sharon x

  • Offline in reply to Gillm

    Thank you so much for your reply. I spoke to a nurse this morning and she suggested stay on low fibre but gradually try introducing different fibre sources. I had a very tiny piece of brown toast today and no more pain than usual. It’s just experimenting. The nurse also suggested I try lactulose as between my two colonoscopies (9 days apart) I was low fibre the whole time and barely went to the bathroom. We’ll see how it all goes. 

    I also found out that they’re having their meeting about me on Monday. After that it’s just a case of how soon they can get me in to meet the team. Hopefully not too long!!! 

  • Offline in reply to shalaway

    Thank you Sharon, yes it’s the staging results and the treatment plan I’m waiting for. I really hope it’s only surgery but we’ll see what happens. I don’t know anything other than there is a tumour in the rectum and the rest of my colon is clear. All the terminology is scary but I’ve read up on the staging a little bit. I’ll keep experimenting with the food until I hopefully find a good balance! 

  • in reply to JoanneW

    I've found milk of magnesia ( laxative dose) more effective than lactulose as lactulose for me causes bloating. Tho it's whatever works best for you. 

    I have a large rectocele which causes many problems and I totally ignore the 5 a day mantra as I know it causes problems. Ultimately its what works for you.

  • Offline in reply to JoanneW

    My tumour is in the anal canal and like you the rest of the colon is fine.

    Experimenting is the best way because what works for others might not be compatible with your body.

    Baked potato minus the skin got me through treatment.

    Sharon x

  • Offline in reply to Gillm

    Gillm do you mind me asking if your rectocele presented before or after radiotherapy?

  • in reply to shalaway

    I didn't have radiotherapy.  I had a right hemicolectoy removing all of ascending colon and a bit of transverse.  Large tumor in caecum.No chemo either, just op. Rectocele was prob there before op but worsened after.

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