What can I do to stay healthy?

What can I do to stay healthy?

1. Why is should I be concerned about Remicade?
2. Sleep
3. Nutrients
4. A Cold
5. The Flu
6. Pneumonia
7. Infections

What does Remicade do?

Remi only switches off one component of your immune system (the part controlling immune system commanded cell death – which the body uses to fight tumors, aka tumor necrosis factor), not the entire immune system.

Still this does make patients taking the drug more susceptible to contracting common illnesses and more likely to suffer serious consequences of they are contracted.

Sleep

Get enough sleep!
 

Many IBD patient’s sleep is interrupted throughout the night for bathroom breaks.  This means a given amount of sleep is less restful to you than it is for someone not suffering from immune disorders.  You should allocate more of your day to getting sufficient sleep.

A lack of sleep makes us more susceptible to illnesses.

Nutrients

To help protect yourself from various maladies, ensure that you are getting the proper nutrients.  Take a multivitamin (take one with a large number of vitamin and mineral entries – men do not need iron supplements) every day to ensure you’re getting everything that you need. Get tested for Vit D annually and take supplements if they are needed. IBD patients also need a Vit B12 test annually and get B12 injections monthly if deficient.

If you bleed regularly (e.g. from your IBD) or have heavy menstration, get your H&H (hemoglobin and hematocrit) tested regularly.  If you are deficient, supplement with iron.  Your body absorbs iron better when taken with Vitamin C, Folic Acid, and Vitamin B12 so consider taking all of these at the same time as your iron.

In summary, take:

1. Multivitamin
2. Test your Vitamin D, supplement if necessary
3. Test your Vitamin B12, supplement if necessary
4. Test your Iron levels, supplement if necessary and add C, B12, & Folic Acid too.

 A Cold

If you think you're starting a cold, take Zicam, ColdEze, or generic equivalents (look for OTC cold remedies with Zinc Gluconate). Many (most?) competitors (Airborne, EmergenC, etc.) are just expensive vitamins - nothing wrong with taking them but you can get that benefit more cheaply with a regular multivitamin like the one mentioned previously.

Avoid remedies with Echinacea and other immune boosters – these counteract the beneficial function of Remicade.

The Flu

If you think you might have the flu (fever, aches, chills, night sweats, runny nose, nausea, coughing, etc.), go to the doctor or urgent care center and get tested. If you test positive for the flu, mention that you are immuno-compromised, ask for, get, and take Tamiflu (which is an anti-viral).

Pneumonia

One other thing, most of those serious life-threatening infections they warn of in the Remi literature involve lung infections from various organisms (aka pneumonia). So if you get any symptoms of potential pneumonia go to the doctor and get checked immediately.

The symptoms common to most pneumonia are:

1. Persistent coughing
2. Shortness of breath

Symptoms which vary depending upon the type of pneumonia:

1. You may or may not get a fever (or night sweats/chills).
2. The cough may or may not be productive.
3. You may or may not have pain in your chest

NOTE: my pneumonia from September was asymptomatic.  I displayed none of the symptoms of pneumonia.  So even if your doctor can’t hear lung noises, you may still have pneumonia.

WebMD has a more thorough list of Pneumonia Symptoms which differ depending upon the cause.

The HIB (which causes pneumonia) vaccine only helps against a specific type of bacterial pneumonia (h. influenza). It is a dead virus so you can get it anytime even on Remi. You only need it occasionally (once every 5 years or so??).

The pneumococcal vaccine (which also causes pneumonia) protects against up to 13 different strains of this bacteria.  The latest recommendations are that immunocompromised patients receive both the vaccine developed for kids as well as the one developed for adults.

Neither vaccine protects you from other bacterial, viral, or fungal pneumonia.

Infections

Last summer (it happened 4-5 times) I had an abdominal abscess that occasionally "leaked" infection into my blood stream.  This causes a condition called sepsis.  IV and oral antibiotics over 2 months couldn't knock out the infection. This is what initially caused me to have to delay starting Remicade and it's what forced my medical team to perform the major surgery in August.

Infections like this are *life*threatening*. You really don't want anything reducing your body's immune response when your life is on the line. The Remicade can wait, stopping the life threatening infection can't.

From the Mayo Clinic:
“To be diagnosed with sepsis, you must exhibit at least two of the following symptoms:

1. Body temperature above 101 F (38.3 C) or below 96.8 F (36 C)
2. Heart rate higher than 90 beats a minute
3. Respiratory rate higher than 20 breaths a minute
4. Probable or confirmed infection"