How to identify and cope with chronic GVHD of the stomach and intestines

Posted June 30th, 2017 by Be The Match and filed in Patient Stories
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Dominique, transplant recipient (center), with her parents

About 6 months after her transplant, Dominique knew something was wrong when trying to eat caused too much pain.

“I was having a great amount of pain after I ate. I couldn’t drink anything. It hurt too much to swallow,” she says. “So when I told my transplant doctor what was going on, we got a gastrointestinal (GI) doctor involved.”

It was important that Dominique contacted her transplant doctor right away. Getting help from your transplant team as soon as possible means that any treatments they give you will have a better chance to work.

And, involving a GI doctor, who specializes in the stomach and intestines, helped her get the best possible treatment. In Dominique’s case, the GI doctor ordered a colonoscopy and an EGD (a doctor places a flexible tube through the mouth into the stomach and small intestine). Those tests, plus a biopsy (testing a sample of tissue taken from the GI tract) led to a diagnosis of chronic GVHD of the stomach and intestines.

Keeping an eye out for the symptoms

Dominique, now 23 years old, received a transplant for severe aplastic anemia 2 years ago. She offers some advice on how to identify and cope with chronic GVHD of the stomach and intestines.

“Pay attention to your body. If something doesn’t feel right, go get it looked at or checked out,” she says. “Don’t ever feel like you’re making up your symptoms.”

Some of the symptoms Dominique had, in addition to not being able to eat very much, included constipation, feeling sick all the time, and extreme tiredness. “It was just hard because I couldn’t eat. I was getting frustrated. I had to watch what I ate because certain things would irritate it more,” she says.

These symptoms are quite common in people who get chronic GVHD of the stomach and intestines, according to Dr. Alousi from MD Anderson Cancer Center. Other signs to look for include:

  • Bloating
  • Decreased appetite
  • Diarrhea
  • Feeling full after eating very little
  • Nausea or vomiting
  • Stomach pain
  • Weight loss

Dr. Alousi notes that when chronic GVHD of the stomach and intestines is diagnosed, doctors pay close attention to two key symptoms: weight loss and malnutrition. In fact, he says, “weight loss is the main symptom used to measure how severe GVHD of the stomach and intestines is”. He recommends that people “track their weight after transplant and tell their doctor right away about any weight loss.”

Because people can have problems eating after transplant, he also suggests keeping a food diary to help you and your doctors determine the causes of any symptoms or weight changes. You can even use your phone to help. “There are a number of smartphone apps that help you track your diet and keep your nutrition goals.”

Treating chronic GVHD of the GI

To treat her GVHD, Dominique’s doctors prescribed steroids, which is common for this kind of GVHD. The steroid treatments eventually worked for her, but the medicine had some side effects that lowered her quality of life for a time.

“Just being on the steroids I couldn’t be outside, I couldn’t walk,” Dominque says. “If I did have the energy to go out, I could only do it for an hour or two before I was sleeping or too tired to do anything else.” She says, “It put a good pause on my whole life for a while.”

Seeing a dietitian is important to help patients with chronic GVHD of the stomach and intestines improve their quality of life, says Dr. Alousi. “Dietitians can recommend dietary supplements and offer advice to manage symptoms.” And because weight loss and malnutrition is related with lower strength and endurance, Dr. Alousi notes that “patients with these symptoms should also see a physical therapist.”

Dominique says that she’s now feeling better. “I’m not cooped up in my house anymore,” she says. “I’m out doing stuff. I’m doing pretty well emotionally.”

Her message to people who get chronic GVHD of the stomach and intestines is to give the treatment time to work. And most important, she says, if you feel sick, tell your doctor, tell a family member. “Get it looked at because you can never be too cautious.”

For more information on chronic GVHD of the stomach and intestines, view our new fact sheet, developed jointly by Be The Match and the Chronic GVHD Consortium.

One Response to “How to identify and cope with chronic GVHD of the stomach and intestines”

  1. Neil Traubenberg says:

    Good for Dominique. I had a bone marrow transplant almost six years ago for CLL. The transplant went very smoothly, but I developed GVHD in the gut and was back in the hospital within two months time. In fact, that stay was longer than the stay for the transplant. Fortunately, that’s all “behind” me now and everything is going well.

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