A Guide to Hereditary Angiodema (HAE) Abdominal Attacks

By: Teresa Scruton

Hereditary Angiodema Abdominal Attacks

There are 3 types of Hereditary Angiodema (HAE) abdominal attacks:

  • Lower abdominal – swelling in wall of colon (large bowel), that causes the greatest degree of pain, nausea, vomiting, and sometimes diarrhea. It can even cause impairment in absorption of crucial vitamins, especially folic acid, leading to episodes of extreme weakness (megaloblastic anemia).
  • Upper G.I. – swelling in the upper stomach, causing nausea, difficulty breathing and digesting food. Less pain than swelling in bowel, but pain nonetheless with vomiting.
  • Small bowel – between the stomach and bowel. Usually not visible swelling. Causes severe nausea, often with vomiting. No digestion during swelling episode, making oral meds very slow to work.

Usually, swelling attacks strike one of the 3 areas of the G.I. tract, but 2 or even all 3 areas can be affected in severe attacks.
Sometimes attacks can affect liver or pancreas, usually requiring hospitalization and often sedation until the attack passes.

There are types of abdominal pain during attacks that are beyond nausea – a hallmark of HAE abdominal attacks.

  • Sharp pain, often localized in one area, such as the lower right side, which then moves to more generalized sharp pain throughout the abdomen.
  • Twisting, “gut-wrenching” pain, not localized to any one area.
  • Intense pressure pain. This feels as though your body is trying to push all of your internal organs down and out of the body.
  • Sick pain, usually with severe vomiting that is painful.
  • Weighty pain, that pushes on other organs, muscles, tendons. As though you have a bowel full of lead weights. This is caused by the weight of the fluid in the bowel wall, and the food matter that is obstructed by the occluded bowel.

There are 3 aspects of all HAE attacks:

  • Pain
  • Inflammation
  • Swelling

All three are present during any attack anywhere in the body, the only variables are degree. Sometimes the swelling is not easily visible, such as in a throat swell. Sometimes inflammation can be intense and experienced on the skin, soles of feet, eyes, and frequently inside the nose.

Very frequent and uncontrolled abdominal attacks can result in intra-abdominal nerve pain, which left untreated can cause pain nearly every day. This can feel like constant attacks. MD’s can treat this neuropathy with drugs that are different from HAE meds, like Gabapentin, and are usually not opioids – without the hassle of refills. These meds are usually prescribed to be taken daily, not when the pain gets worse. This way, the meds stay in the body all the time and can measurably affect the patient’s quality of life with this terrible disease.

About the Author: Teresa Scruton is a tireless advocate and educator for HAE. A former Federal Research Project Coordinator and retired Federal Research Compliance Officer, she truly understands the challenges rare disease patients face. She would love to see all with HAE have access to the medications they need and wants HAE diagnoses and treatment protocols  added to emergency room doctors’ apps. She hails from Nebraska!

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