When you eat, food travels from the mouth, through the esophagus, and into the stomach. The stomach is a muscular sac that contracts to mix food with digestive secretions. Glands in the stomach secrete acids and enzymes to help break down food and mucus to lubricate the digestive tract and coat the stomach wall.
Approximately 3 hours after arriving in the stomach, partially digested food passes in small amounts into the 20-foot-long small intestine. As it moves through the small intestine, digestion of proteins and carbohydrates is completed, fats are digested, and nutrients are absorbed into the bloodstream. Undigested material passes into the large intestine, also called the colon. In this 5-foot-long organ, water and vitamins are reabsorbed, leaving behind undigested material called feces. The feces move into the rectum, then out of the body through the anus.
Survivors of childhood cancer sometimes develop fibrosis (excessive formation of scar tissue) or chronic enterocolitis (inflammation of the intestines). Fibrosis can occur anywhere from the esophagus to the rectum, causing thickening of the inner walls that can cause strictures or obstructions (see Chapter 10 , Head and Neck , for a discussion of esophageal strictures). Fibrosis can also occur outside of the GI tract in the form of adhesions (when different structures in the abdomen stick together). Fibrosis and chronic enterocolitis can be caused by the following:
Radiation (3,000 cGy or higher)
Chemotherapy (when given with radiation)
Fibrosis and chronic enterocolitis can cause adhesions, obstructions, ulcers, diarrhea, constipation, lactose intolerance, and malabsorption problems.
Intestinal damage can appear months to decades after treatment ends. The colon and rectum are more often damaged by radiation than are the stomach and small intestine.
Survivors who received low doses of radiation have a very low incidence of GI damage, while those who had multiple abdominal surgeries and higher radiation doses (e.g., abdominal rhabdomyosarcoma, Ewing sarcoma, Hodgkin lymphoma, Wilms tumor treated in the 1960s and 1970s, or neuroblastoma treated in the 60s or 70s) are at higher risk.
I had 7 weeks of radiation to the abdomen 12 years ago to treat Hodgkin’s disease. I was 13 years old at the time and went from 108 pounds to 76. The radiation tightened up and atrophied parts of my colon. I get bouts of partial obstructions. I have constipation, excruciating pain, and vomiting. When I feel it starting, I take mineral oil, and use suppositories and enemas. I listen to my bowels with a stethoscope and when the bowel sounds are absent, I know I’m in trouble. Sometimes I need to go to the hospital for fluids and big enemas, and once I needed surgery. They took out the most damaged part of my intestine at that time. I try to prevent these problems with diet, because I already have adhesions from my surgeries, and more surgeries will just make that worse. My doctors and surgeon are top-notch and that really helps.
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My 5-year-old son was treated for rhabdomyosarcoma of the prostate. He had a radical prostatectomy, radiation to the tumor bed, and chemotherapy. Since radiation, he has not regained bowel control. He has 10 to 15 bowel movements a day. He often can’t make it to the toilet and it is a lot of mess for all of us. What amazes me is how little help we have had in finding solutions to what seem to be medical problems. We were very pleased with how his cancer treatment went. Now it seems that it was a breeze compared to the chronic health problems he experiences.
Chronic enterocolitis can cause acute abdominal pain and vomiting years after abdominal radiation. If you develop these symptoms, seek medical help and make sure you tell the healthcare provider about your prior radiation.
A common concern among families of Wilms tumor survivors is stomach pain. My son, Lucas, who is 11 years off treatment, has stomach pain and also has some bowel issues that come and go. Lucas avoids certain foods and activities out of concern that it might trigger the stomach pain. He’s had so many tests done to try and figure out what is causing it and everything comes back normal. On paper, he is the model of health. And, yet, here’s a 13-year-old who has a bucket that he keeps by his bed and carries around the house with him just in case the stomach pain might come along and cause him to throw up (it does not happen all the time with the pain, but it happens frequently enough). He’s had a colonoscopy, blood work, ultrasounds—everything looks great. Oncologist says it’s probably scar tissue (strictures) in or near the bowel. Surgeon blames the chemotherapy (vincristine in particular) because it causes neuropathy in the GI system. Both the oncologist and surgeon say the abdominal radiation is a contributing factor to poor bowel motility. What is frustrating in all of this is that, currently, we have no test (diagnosis) that confirms anything. Does it affect his quality of life? Yes. Is it serious, life threatening, and the end of the world? Probably not.
Another problem that can develop is slow emptying of the stomach and reflux of food back into the esophagus. These effects can occur after radiation or in survivors who had long-term problems with severe vomiting while on treatment. Reflux is a chronic problem. Barrett’s esophagus (changes in the cells of the esophagus) can occur in association with reflux in those whose GI tracts were irradiated. For more information about late effects to the esophagus, see Chapter 11 .
Ever since my 4500 cGy of mantle radiation in 1968, I’ve had a lot of heartburn. All they had then to treat it was Tagamet ® —not all the choices that are now available. I was sleeping on lots of pillows to keep my head elevated, but I still had heartburn. When the problem was identified, I started esophageal dilation and better medications. I now have precancerous cells in the stomach. I have endoscopies every 6 months to biopsy it.
A rare late effect that results from nerve damage is a change in the GI tract’s ability to move food through at a normal rate (called dysmotility).
Melissa has gastric atony (lack of muscle tone in the stomach and failure to contract normally, slowing movement out of the stomach) due to nerve damage from vincristine. It might also have been affected by her severe pancreatitis or craniospinal radiation. She had really bad problems with reflux, also. She’s had a jejunostomy tube in her small bowel for 3 years. Her tastes are really altered, too. Sweet and sour are mixed up—she says cake tastes too sour. And she used to love ice cream, but now it just doesn’t taste right to her.
Lactose intolerance means the body can’t absorb the sugar (lactose) contained in milk and other dairy products. Fibrosis from radiation, certain antibiotics, and some chemotherapy drugs can cause lactose intolerance in some individuals. The parts of children’s or teens’ intestines that break down lactose stop functioning properly, resulting in gas, abdominal pain, bloating, cramping, and diarrhea. Some people have a genetic predisposition for developing lactose intolerance. If you have this problem, discuss it with your healthcare provider. A nutritionist can provide you with information about low-lactose diets and alternate sources of protein and calcium.
The role of chemotherapy drugs and the development of GI late effects is not well understood. Certain drugs (i.e., dactinomycin, Adriamycin ® , daunorubicin) are known to increase the effects of radiation and thus may increase the likelihood of GI problems.
A very small number of survivors have permanent colostomies or gastrostomies. Survivors with alterations of their GI tracts should have a gastroenterologist as part of their primary treatment team.
My daughter was born in 1991 with neuroblastoma and Hirschsprung’s disease. When she was 1 month old, the surgeon had to remove part of her bowel and put in a colostomy. He removed three small tumors at the same time. We still go back every few months for follow-up and see a variety of specialists, including the gastroenterologist.
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My daughter has a jejunostomy button and still gets tube feedings at night, many years after her treatment for relapsed leukemia. We use Pediasure ® and it gives her about 800 calories a night. It’s the only way she keeps any weight on her. She eats during the day, but only a very few types of food. She can’t tolerate dairy products.
Signs and symptoms of damage to the stomach and intestines are as follows:
Nausea and vomiting
Persistent or severe abdominal pain or cramping
Blood in the stool
Loss of appetite
Problems gaining weight or loss of weight
The primary symptom of malabsorption is failure to grow and thrive. It often is accompanied by persistent diarrhea. This problem usually begins during treatment and persists. Malabsorbtion does not suddenly occur years after treatment.
My son was diagnosed with hepatoblastoma when he was 1, and he has major GI problems. Whenever the poor child eats all he can do is scream. He has only gained 2 pounds in the 14 months since treatment ended. He still looks so frail and weak. He has energy, but I have no idea where he gets it from. I do give him vitamins.
Small bowel obstructions generally begin abruptly. The signs and symptoms include abdominal pain, nausea, vomiting, and loss of appetite. The pain is sometimes described as crampy. It may be in one specific area but is more commonly generalized. If the obstruction is complete, you cannot pass gas or have a bowel movement. Vomiting is caused by the increased pressure from the obstruction. The abdomen will become distended and if tapped will sound like a drum. If this happens, you need to get medical attention right away because it can be life threatening.
Your annual follow-up appointment should include a thorough physical examination and health history. If you haven’t reached your full adult growth, your height and weight should be plotted on a growth chart. Your healthcare provider should ask about your diet, any stomach or abdominal pains, and whether you have chronic diarrhea or constipation. If you have persistent symptoms, you should be referred to a gastroenterologist for further evaluation.
The doctors used to call my son’s stomach pains a mystery illness. They have performed every test on that child. They have gone down, up, and sideways. The barium enema was fine, the upper GI was fine, the scans were fine. They put him to sleep (thank goodness) for the colonoscopy and the endoscopy. They showed he had colitis.
These kids are so little and all they can say is, “It hurts.” He will eat something and immediately double over in pain. We try to stay away from the things that we know will cause the most pain, but sometimes it’s everything that goes into his mouth.
Certain abnormalities can be detected only with laboratory tests. A complete blood count will show if you have anemia. Some follow-up clinics check serum total protein and albumin levels every 3 to 5 years for survivors at risk for enteritis. You are at risk if you had one or more abdominal surgeries, abdominal radiation, or chronic GVHD after a stem cell transplant.
My son has frequent, uncontrollable bowel movements after radiation, chemotherapy, and surgery for rhabdomyosarcoma of the prostate. Our oncologist told us to use steroid suppositories. It was terribly invasive and didn’t help. After months of just enduring and lots of advice about “being tough” with a 4-year-old who was pooping his pants, I self-referred him to rehab medicine. I was thinking that they could help with a bowel program for him, and I was very desperate. They had me take data for a while and then had me give him an anti-diarrheal. Again I didn’t see improvement.
All of these problems really affect his quality of life. He is in a mixed regular education/special education placement for kindergarten because of bowel and bladder concerns, even though he is in the 99 th percentile in language and 95 th percentile in cognitive skills. There are no options for first grade. We do have a very good pediatrician who has just referred us to the GI clinic. He wants to find out if my son has intact sphincter function.
Some bowel obstructions resolve with time, bed rest, and fluids. If the obstruction is complete, the symptoms will continue and surgery may be necessary. Surgery to relieve obstructions or to remove damaged sections of the intestine is relatively high risk and should be done by a surgeon with extensive experience doing bowel surgeries and working on radiated tissues.
I work hard to prevent the partial bowel obstructions I am prone to getting. I don’t eat pizza or cheese. Cheese, especially the processed kind, is the worst for blockages. I eat lots of fruits and veggies and take plenty of fluids. I also take mineral oil and try to prevent hard stools.
Many GI problems require low-fat, gluten-free, lactose-free, or low-residue diets. These are best undertaken under the guidance of a gastroenterologist and nutritionist.
I had my stomach removed in 1982 and a new one formed out of part of my small intestine. I am lactose intolerant and can’t have many dairy products. I also have to steer clear of really acidic items like orange juice, because it irritates the esophagus. Roughage like lettuce gives me problems too.
It was a trial and error situation for many years learning what my “new stomach” could handle and what it couldn’t handle. There are now post-gastrectomy diet plans available at most hospitals that have dietitians. I spoke to the dietitian when I had another surgery in 1997 and she showed me the suggested diet plan. It was pretty much what I had already learned on my own. Back in 1982, that type of surgery wasn’t real common and definitely not in a young girl.
An uncommon late effect after treatment for childhood cancer is gallstones, which are solid lumps of cholesterol or bilirubin that form in the gall bladder. Survivors who are most likely to develop gallstones are those who: 8
Had abdominal radiation that included the gall bladder.
Had a stem cell transplant.
Have cirrhosis of the liver.
Some people with gallstones have no symptoms, and the gallstones are discovered in routine x-rays. Asymptomatic gallstones are usually not treated. However, if a gallstone blocks a bile duct, then pain develops in the mid right abdomen or upper right abdomen. Other symptoms include fever, nausea, vomiting, and clay-colored stools.
If you have these symptoms, you should see your healthcare provider immediately. Gallstones are usually diagnosed with an abdominal ultrasound or CT scan. In the past, open surgery was done to remove the gall bladder. Now, the gall bladder is removed using laparoscopic surgery, which uses smaller incisions and usually results in a much shorter hospital stay.
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)