Stevens-johnson Syndrome

WHAT YOU SHOULD KNOW:

Stevens-johnson Syndrome (Inpatient Care) Care Guide

  • Stevens-Johnson syndrome (SJS) is a serious condition of your skin and mucous membranes. SJS is usually caused by a medicine you are taking. SJS may also be caused by infection, vaccinations, or diseases involving your organs or whole body. The cause of SJS may be unknown, and your risk may be genetic (passed on by a parent). With SJS, you will lose your epidermis (outer layer of skin) on up to ten percent of your body. Sores may grow on your skin, genitals (area between your legs), in your mouth, eyes, and other organs. SJS can overlap with the disease toxic epidermal necrolysis (TEN). With SJS/TEN you will lose 10 to 30% of your epidermis.

  • Your caregiver will stop medicines he thinks may be causing your sickness. Treatment may include medicines for pain, infection, and to help heal your sores. You may need an IV for medicines, and to put fluids and liquid nutrition into your body. You may need blood tests or x-rays, wound (SJS sores) care, and maybe surgery to help you heal. A therapist may exercise your arms and legs if you have to stay in bed. If sores are in your throat and lungs, you may be on a ventilator to help you breath.

  • With SJS your skin may heal with or without scars. Healed skin may have pigment (color) changes, you may lose your nails and hair for your lifetime. You may have lifelong problems swallowing, genital skin problems, and difficulty urinating. You may also be seen by special caregivers to help with lifelong skin, eye, and medical problems. With SJS, you may die. Death is usually caused by infection, lung problems, or other serious problems.

CARE AGREEMENT:

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.

RISKS:

Treatment for SJS may be painful. Medicines may cause an allergic response. If you need surgery, you are at risk of bleeding or getting an infection. Healed skin may be scarred and have pigment (color) changes. You may lose your nails and hair for your lifetime. You may also have lifelong skin, eye, and medical problems. Untreated SJS may cause dehydration (losing too much fluid from your body), infection, blindness, organ failure, and death. Ask your caregiver if you are worried or have questions about your care.

WHILE YOU ARE HERE:

Informed consent

is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.

A Foley catheter

is a tube put into your bladder to drain urine into a bag. Keep the bag below your waist. This will prevent urine from flowing back into your bladder and causing an infection or other problems. Also, keep the tube free of kinks so the urine will drain properly. Do not pull on the catheter. This can cause pain and bleeding, and may cause the catheter to come out. Caregivers will remove the catheter as soon as possible to help prevent infection.

Heat:

With SJS you are at risk of having a low body temperature because of skin loss. Your hospital room will be kept warm to keep your body temperature normal.

Intake and output:

Your caregivers may need to know how much liquid you are getting, and how much you are urinating. You may need more or less liquid each day. Ask your caregiver how much liquid you should have each day. Ask caregivers if they need to measure or collect your urine before you flush it down the toilet.

IV:

An IV is a tube put in your vein for giving medicine or liquids. The IV is connected to longer tubing and liquid. You will need an IV to put fluids back into your body. Medicines may also be given through your IV.

Mouth care:

This is done to keep your mouth clean, and to stop infection from starting. Your caregiver may use a special tooth brush or sponge to clean your mouth. Your caregiver may also have you rinse your mouth with a mouthwash that kills germs. You may have lip protectant put on your lips to help them heal.

Nasogastric (NG) tube:

A NG tube is put into your nose and down into your stomach. The tube may be attached to suction (vacuum) to keep your stomach empty. You may need a NG tube if your stomach gets too full or if you throw up a lot after surgery. You may also need it if you cannot use your mouth to eat. Food or medicine may be given through your NG tube.

Special bed:

You may be placed on an air-fluidized bed to decrease any more injury to your skin. An air-fluidized bed has warm air that moves around inside the mattress. The moving air feels like fluid movement.

A ventilator

is a machine that gives you oxygen and breathes for you when you cannot breathe well on your own. An endotracheal (ET) tube is put into your mouth or nose and attached to the ventilator. You may need a trach if an ET tube cannot be placed. A trach is a tube put through an incision and into your windpipe.

Vital signs:

Caregivers will check your blood pressure, heart rate, breathing rate, and temperature. They will also ask about your pain. These vital signs give caregivers information about your current health.

Tests:

  • Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.

  • Chest x-ray: This is a picture of your lungs and heart. Caregivers use it to see how your lungs and heart are doing. Caregivers may use the x-ray to look for signs of infection like pneumonia, or to look for other problems caused by SJS.

  • Eyes: You may be seen by a special caregiver to check your eyes. Sores in your eyes may cause lifelong problems.

  • Skin biopsy: Your caregiver may biopsy an area of your skin to be sure you have SJS. For a biopsy, your caregiver will take a sample of your skin for testing.

  • Wound culture: Your caregiver will use a swab to collect fluid from a sore. This swab is then tested to see if you have any germs growing on your skin or sores.

Treatment options:

  • Medicines:

    • Antacids: With SJS, sores may grow in your stomach and intestinal tract and bleed. This medicine may help lower your chance of getting this kind of bleed.

    • Antibiotics: Antibiotics may be given to help treat an infection (caused by germs called bacteria) in your blood. Your caregiver may also put medicine on your skin to lower your chance of infection. This medicine is a topical antibiotic or antiseptic.

    • Blood thinners: This medicine helps stop clots from forming in your blood. This may be needed if you are not able to get out of bed for a long time.

    • Eye drops: Eye drops may be used if you have sores in your eyes. This may help your eyes to heal, and stop infection from starting.

    • Immune globulins: This medicine is given as a shot or an IV infusion to make your immune system stronger. You may need immune globulins to treat or prevent an infection. It is also used when you have a chronic condition, such as lupus or arthritis. You may need many weeks of treatment. Each infusion can take from 2 to 5 hours.

    • Pain medicines: Caregivers may give you medicine to take away or decrease your pain. Pain medicine may be given through an IV or by mouth. You may get pain medicine from a special pump called patient controlled analgesia (PCA). Your caregivers set up the PCA pump to give you small amounts of pain medicine through your IV. The PCA pump has a cord coming from it, with a push button on the end. When you feel pain and push the button, you will give yourself pain medicine. There is a limit on how much medicine you can get so you don't get too much. Your pump may give you a constant dose of medicine, along with the medicine you give yourself.

    • Pressors: This kind of medicine may be given to increase your blood pressure. Keeping your blood pressure in normal range protects your heart, lungs, brain, kidneys, and other organs.

  • Hydrotherapy: This therapy is done in a whirlpool. Hydrotherapy may help to clean your wounds, and remove dead tissue from your skin.

  • Physical therapy: A physical therapist may do special exercises with you. This will help your arm and leg movement if you have to stay in bed.

  • TPN: TPN stands for total parenteral nutrition. It is also called hyperalimentation. It provides your body with nutrition such as protein, sugar, vitamins, minerals, and sometimes fat (lipids). TPN is used when you have problems with eating or digesting food. TPN is usually put into your body through a large IV. You may need TPN for several days or longer.

  • Surgery: Surgery may be needed if your skin does not heal right. You may need any or all of the following:

    • Debridement: This is done to clean and remove dirt, or dead tissues from the injured area.

    • Skin graft: A piece of skin is taken from one area of the body and attached to the injured area. A skin graft may help to heal your injury. Donor skin may also be used.

  • Wound care: Your caregivers may put special bandages on your sores to protect them, and help them heal.

© 2013 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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