Dietary Solutions for Radiation Enteritis

Hi,

I'm looking for any ones suggestions for dietary solutions for my Mom's 21 yr old Radiation Enteritis......All I know of the process is what I've been through with her......She was on Megase years ago, went from being 5' 7' and 160 to 5'3' and 105......As its been 20 + years living with this problem......We now face a problem with pain management and food......Most pain medications are too strong for her and food just contracts her stomach......She is scheduled for a Barium Enema next month......But her energy level is just so low to none existent......She is sleeping at least 12 hours a day......She does know that a feeding tube will be used if her weight goes below 100......I can't find alot of info and what to do with the chronicness of it all......Pain meds either knock her out or make her Stomach sick......So many issues related to the radiation......I know that there are few medications to enduce eating, but what I'd like to have anyone suggest diets, regular or liquid to help with the eating......Her doctors are aware of her condition, though she is 76 and it seems that the long term affects of this disease are getting worse and not very easy to manage......Any one out there with some food or diet suggestions?.....Send them my way anything you might suggest

[CalGal]

You may have seen these already, but the general recommendations are:

1. Since the intestines have been damaged by radiation, the production of enzymes, especially lactase, decreases or stops entirely. Since lactase is essential in the digestion of milk and milk products, the diet should be lactose-free. It's also suggested that the diet be low-fat, and low-fiber.  

2. General foods to avoid: Milk and milk products (maybe? some yogurt?) Processed cheese may or may not be tolerated. Other no-no's are: whole-bran bread and cereal; nuts, seeds, and coconut; fried, greasy, or fatty foods; fresh and dried fruit and some fruit juices (such as prune juice); raw vegetables; rich pastries; popcorn, potato chips, and pretzels; strong spices and herbs; chocolate, coffee, tea, and soft drinks with caffeine; alcohol and tobacco.

3. Recommended: Fish, poultry, and meat that is cooked, broiled, or roasted; bananas, applesauce, peeled apples, and apple and grape juices; white bread and toast; macaroni and noodles; baked, boiled, or mashed potatoes; cooked vegetables that are mild, such as asparagus tips, green and waxed beans, carrots, spinach, and squash; eggs and smooth peanut butter.  

Some ideas that may (or may not help): Eat food at room temperature; no carbonated beverages unless the carbonation is gone; and for some reason adding nutmeg to the food can sometimes help. I believe the nutmeg has an effect on movement of the intestinal tract but this is via someone I've talked to who had the problem. I have no experience with it.

A low-residue diet can also be checked out - it sometimes helps. You can find examples of different diets at www.gicare.com.

Good luck.

[Jaybay]

I've been on a primarily liquid diet for several years because I have scar tissue wrapped all over my intestines.  This stuff grows like a cancer in me, but it's just plain old scar tissue run amok.  It forms as part of the natural healing response to any injury or inflammation.  Bowels are particularly sensitive to radiation and adhesion formation, and I'm wondering if your mom has ever had a surgeon check her for adhesions with minimally invasive laparascopic surgery.  Since adhesions are soft tissue, they generally don't show up on tests like x-rays, CT scans, ultrasound, or MRI.

I am proof that a person can maintain proper nutrition with a liquid diet.  I never had any help from the medical community in figuring it out either.  It just took a lot of experimenting with the blender and juicer to figure out what I could tolerate.  Smoothies of various concoctions along with vitamins and other supplements have kept my weight low, but not dangerously so.  I had a few months of vitamin B-12 insufficiency that left me with numb extremeties, and had to figure that one out on my own as well.  Adding B-complex 100 took care of that in a few weeks.  I did ask for a referral to a nutritionist from 2 different doctors, and they just shook their heads and said they didn't know one.  OK, fine.  I'll do my own research.

All I can say is thank God for the internet and sites like Med Help, because my own doctors are of little help in managing my day-to-day symptoms and eating/ nutrition issues.  Any time a slow motility issue occurs, a low-residue (basically low fiber) diet is a good thing to try to help reduce the severity of symptoms.  Like any other diet, there may be unintended consequences like constipation.  With my already slow motility due to the adhesions, and not being able to tolerate much in the way of fiber, constipation is a huge issue.  So what's one more pill?  Add on a daily stool softener.  

My pain management doctor prescribed narcotic pain meds and nausea meds, which do further slow transit time, but I've pretty well sorted out what I need to do to stay regular over the years.  If nothing happens in a few days (which isn't that bad considering the low residue diet) I can always drink a bit of magnesium citrate and get things going that way.  The mag citrate works by pulling water from the rest of the body and sending it to the colon.  It works the same way the stuff does that you take as a prep before colonoscopy.  You wouldn't want to rely on it every day, but in a pinch, I know it's going to work without a lot of cramping.

Yes, it's not fun getting used to the idea that I'll likely never be able to enjoy a proper holiday meal again, or a steak, or a big juicy hamburger, but after enough bowel obstructions, it just isn't worth it.  It's really amazing what the human body can tolerate, I just wish I wasn't the one to have to prove it!  :-)

Your mom may be 76, but that isn't "old" in my book.  My family members have a tendency to live well into their 90's, including my grandfather who beat cancer at age 75 and lived to 97.  If you think your mom's docs are just blowing her off due to her age, she needs different doctors.  I fully believe your mom has a belly full of adhesions too as a result of her radiation therapy.  It might be worthwhile to consult a surgeon about the possibility of taking a peak in her abdomen to not only diagnose the problem, but cut those things as well.  In some people like me, they grow right back.  In most people, adheliolysis surgery is the end of the problem.