About ormond's disease

What is ormond's disease?

General Discussion

Retroperitoneal fibrosis is a rare inflammatory disorder in which abnormal formation of fiber-like tissue (fibrosis) occurs behind the membrane that lines the cavity of the abdomen (peritoneum). This abnormal tissue growth often spreads to affect the tubes that carry urine from the kidney to the bladder (ureters). Often these tubes become blocked by the excess tissue. Specific symptoms may vary depending upon the exact location of tissue growth and how far it spreads. In most cases the cause of this disorder is unknown (idiopathic).

What are the symptoms for ormond's disease?

This disorder results in decreased blood flow from the aorta to the lower part of your body. Initially, your body reacts to the reduced blood flow. Symptoms that occur in the early stages of this condition include:

  • dull pain in the abdomen or back that may be hard to pinpoint
  • pain on one side between your upper abdomen and back
  • leg pain
  • discoloration in one or both legs
  • Swelling of one leg
  • intense abdominal pain with bleeding or hemorrhaging

Other symptoms may arise as the disease progresses, but certain symptoms can occur at any stage. They include:

  • severe abdominal or back pain
  • appetite loss
  • weight loss
  • Fever
  • Nausea or Vomiting
  • an inability to urinate
  • reduced urine production
  • impaired limb movement
  • an inability to think clearly
  • a low level of red blood cells, which is called anemia
  • kidney failure

You should see your doctor if you have reduced urine output with abdominal or lower back pain. These can be symptoms of kidney damage.

What are the causes for ormond's disease?

According to the National Organization for Rare Diseases, the exact cause of this condition is unknown in about two-thirds of cases.

Age and gender are the greatest risk factors for the disease. According to the National Center for Biotechnology Information, it occurs most often between the ages of 40 and 60. However, it can develop at any age. The condition occurs twice as often in men as in women.

Specific conditions linked with retroperitoneal fibrosis can include:

The disorder can also be associated with:

  • recent surgery on the abdomen or pelvis
  • the use of cancer treatments involving external beam radiation
  • certain medications to treat migraines and high blood pressure

What are the treatments for ormond's disease?

Treatment varies depending on the severity and location of the fibrosis. If you’re diagnosed in the early stages of the condition, you may be prescribed anti-inflammatory medications, corticosteroids, or immunosuppressants.

If you’re diagnosed after fibrosis has blocked one or both of your ureters, your doctor will need to clear the obstruction.

This is done by draining the urine with a stent, or drainage tube, inserted through your back and into your kidney. A stent may also be run from your bladder through the ureter into the kidney.

In some cases, surgery may be required. It may be used to:

  • free the affected ureter from the fibrosis
  • wrap the affected ureter in fat tissue from the intestines to protect it from fibrosis regrowth
  • reposition the affected ureter away from the inflammation to prevent the blockage from happening again

The goals of treatment are to remove the blockage, repair the affected ureter, and prevent it from happening again. For many people, treatment requires both medication and internal intervention.

What are the risk factors for ormond's disease?

According to the National Organization for Rare Diseases, the exact cause of this condition is unknown in about two-thirds of cases.

Age and gender are the greatest risk factors for the disease. According to the National Center for Biotechnology Information, it occurs most often between the ages of 40 and 60. However, it can develop at any age. The condition occurs twice as often in men as in women.

Specific conditions linked with retroperitoneal fibrosis can include:

The disorder can also be associated with:

  • recent surgery on the abdomen or pelvis
  • the use of cancer treatments involving external beam radiation
  • certain medications to treat migraines and high blood pressure

Is there a cure/medications for ormond's disease?

There is no cure for Ormond's disease/Idiopathic retroperitoneal fibrosis, but there are medications that may help manage the symptoms.

  • Ormond's disease is an autoimmune disorder that causes inflammation of the muscles and joints. It can affect any muscle group in your body but most commonly affects the shoulders and hips. The most common symptom is pain, although you may experience weakness or stiffness as well.
  • Ormond's disease is typically treated with medications and physical therapy to help you cope with your symptoms as they arise. Your doctor may also recommend surgery or other procedures to treat complications of the disease, such as bone fractures or joint pain.
  • The best way to treat this condition is to manage the symptoms while they're occurring and prevent them from worsening over time by participating in physical therapy sessions regularly each week (or at least every couple of weeks) so that you don't have any more problems later on down the line!
  • There are several types of medications that can help treat Ormond's disease: steroids, nonsteroidal anti-inflammatory drugs (NSAIDs), disease-modifying antirheumatic drugs (DMARDs), and biologic agents. Steroids are prescribed to reduce inflammation and pain; NSAIDs help control pain and swelling; DMARDs slow down the progression of the disease by reducing inflammation; biologics target specific proteins in your immune system that play a role in causing damage to healthy tissue.

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