Diet changes after bowel/colo-rectal cancer, and what to do about it.

January 13, 2013 1:05 PM

Looking for info from colo-rectal cancer survivors on what you've done to fix/deal with the diet change issues.

This is for my mom, who's mid/late 50s.

Ten years ago, she had surgery for colo-rectal cancer. The discovery + treatment was very fast: blood in stool on the weekend, diagnosis by the end of that week, surgery by the end of the week after that. The surgery involved taking out the tumorous part of the intestines and then linking the two halves back up. There was at-home chemo (the wearable pump kind) for awhile after that.

The short version of the aftermath is that she can't eat healthy, and she can't exercise without needing to know where a bathroom is at all times and being really sure about how long its been since she's eaten and had a BM, and even then knowing that there's going to be a problem despite all precautions.

* No raw fruits or vegetables except in one- or two-bite quantities. Cooked vegetables are slightly better, but not a lot.
* No legumes
* No nuts

Eating any of the aforementioned foods results in a lot of indigestion issues and then (sometimes sudden) diarrhea. Food IN GENERAL causes problems - there's nothing she can eat and NOT have issues - but the above are the worst. And when I say exercise, I mean even walking the dog is a problem.

Looking for info online throws a lot of talk about diet changes to avoid cancer, and some woo-woo nonsense about magic diets to cure it. There are also some helpful tips like "eat healthy and exercise", which she'd love to do but that is expressly the problem!

So the question is: have you or someone you know had colo-rectal cancer? The diet is the biggest issue, so something that could get her to the point where she could enjoy a salad once a month without worrying about the consequences would be pretty fantastic. Mom copes alright - both she and her doctors just shrug, at this point (it's better than dying, is the sentiment) - but if there's some weird or new or old thing that you know about that might be worth trying, I'd love to know.

posted by curious nu to health & fitness (11 answers total)

curious nu, can you be a little more specific about the surgery your mom had? Was it a simple bowel resection? Do you know which part and how much of the intestine was removed? Also, what kind of doctor is she in the care of now -- a colorectal surgeon, a gastroenterologist, an oncologist?
posted by telegraph at 1:38 PM on January 13

I've had the more extreme version of this surgery and I can eat almost everything. I have to say that motilium has been a good friend at times. (Particularly when travelling in India...dodgey water AND 24/7 legumes. Such fun!)

I accept that every time I need to go to the bathroom to urinate, I'll also need to do a poo also....which saves me time and anxiety etc.

Problem foods for me are Tom yum goong (Thai sour soup) and pho Vietnamese beef soup. But I eat them anyway....I just need a loo while I'm still at the restaurant.

I'm happy to answer any and all questions you and your mum have.

I am a health educator and a mother and Australian, so there is no such thing as too much information in my world.
posted by taff at 1:44 PM on January 13 [1 favorite]

Oh yeah....bananas bind you up. Eat them!

(You could Google constipating foods for more tips. It will be lots of stuff for babies, but that's ok.)

I don't think, in my uninformed opinion, that the cancer is the key thing, it's the actual surgery site and size....as telegraph says on preview. Lots of folk with Crohn's disease would also suffer this. (More words to Google.)
posted by taff at 1:49 PM on January 13

My mom had similar surgery but it was precancerous. She has similar problems but the doc has her taking fiber tablets with a big glass of water. She still carries around spare clothing and such (her surgery was this summer.)

Perhaps she might need to limit those foods to simply having them at home? If she's not in pain, but it's just a motility issue, maybe that is what she should do.
posted by St. Alia of the Bunnies at 2:48 PM on January 13

telegraph: just got off the phone with her; my memory was hazy (I talked with her about doing this post months ago). Details:

lower anterior resection + colectomy
Problem area was between the rectum and the sigmoid colon; most of the rectum is gone now
LOTS of scarring (she's apparently prone to surgical scarring, between this + past surgeries) down there; surgery is an option but her doctors (an oncologist and a surgical oncologist specializing in this cancer) say she wouldn't be better off overall, and possibly worse)
She has an oncologist
There was also radiation treatment done (I had forgotten about that)

In general, the surgical options aren't anything she wants. She doesn't want an ostomy - which would bypass the issue - and the repairing options are pretty iffy (trying to deal with the scar tissue, or trying to rebuild the rectum). The cancer + surgery was ten years ago, and I'm not really expecting anything new, but you never know if you don't ask and I want to try and track down possibilities as they come up.
posted by curious nu at 4:19 PM on January 13

Crohn's disease patients often have bowel resectioning sugeries, scarring and difficulties digesting various foods too. I recommend checking out the Crohn's forums and checking the diet-related parts: http://www.crohnsforum.com/
posted by Aliera at 6:37 PM on January 13

I went through colon cancer treatment in 2010-2011, including radiation, LAR, and chemo. I definitely had diet issues for the first few years, but now can eat relatively normally most of the time (though I certainly have trigger foods to minimize or avoid, mostly anything greasy or rich).

Has your mom tried the M.D. Anderson protocol for bowel management following colon surgery? It's basically the strategic use of supplemental fiber (titrated along with anti-diarrhea medications as necessary) to slow down bowel transit time -- which seems counterintuitive, because fiber is always touted as a remedy for constipation, but if you take measured doses of fiber with a very small amount of water immediately after a meal (i.e., NOT what it says on the label), it actually absorbs liquid and functions to slow everything down.

Another important component of the program is to limit fluid intake with meals to no more than 8 oz. (additional fluids can be taken an hour after eating), and to avoid (or at least limit) hot liquids in general, especially anything with caffeine.

I only found out about this protocol through these discussion boards (which you or your mom might also find helpful), where quite a few people have tried it; it helped me the first year or two after surgery, but I don't follow it regularly/strictly any longer. I also made some additional dietary changes (stopped eating white bread and pasta, for example) on the advice of the nurse who originally developed the program, who was kind enough to talk to me even though I wasn't a patient at M.D. Anderson. (She has since retired, but I have the phone number to reach the other nurse specialists who administer the program and who also seem to be happy to help; memail me and I'll send it to you if you're interested.)

Good luck to your mom!
posted by scody at 12:42 AM on January 14 [1 favorite]

I know your mom says she doesn't want an ostomy, but has she done much research on the subject or spoken/met with people who have them? I think most people have a pretty strong knee jerk negative reaction to the idea, but they've come a long way and can be really life changing in a positive way. For example, check out Ostomy Outdoors, about a young woman with a permanent ostomy and a really active lifestyle. Many hospitals also have ostomy support groups and lectures, as well as ostomy nurses who you can meet with just to chat and talk about lifestyle.

I don't know much about your mom's specific situation (I'm coming at this from the IBD side of things) and it sounds like scody's protocol is definitely a great avenue to explore, but I know that in her position I would definitely be strongly considering an ostomy.
posted by telegraph at 4:27 AM on January 14

Forgot to mention earlier: another thing for your mom to consider is a daily probiotic. After years of going to the bathroom so frequently, it's possible that the balance of intestinal bacteria has been thrown off (which then contributes to the cycle of frequent bowel movements), so regular use of a probiotic could help on that score. Culturelle and Sustenex are good ones that don't have to be refrigerated, but there's plenty out there. Eating probiotic foods -- yogurt, most obviously (make sure it's got live cultures) -- can also help.
posted by scody at 8:33 AM on January 14

my mother suffered from this for 10 years, from a different aetiology. Recently she had surgery to release some adhesions and it's improved quite substantially. It is common after bowel resection to get adhesions and that might be a factor.

Ask a colorectal surgeon for a second opinion.
posted by kairab at 3:04 PM on January 14

Thanks for the answers. I'll pass the info along. =)
posted by curious nu at 4:11 PM on January 15