Parent With a Catheter or Ostomy: Warning Signs and ER Plan

If your parent has a urinary catheter or an ostomy, the emergency plan comes down to three things: know the warning signs that mean a call to the doctor or a trip to the ER, keep a few days of supplies with the sizes and product numbers written down, and have one sheet that tells paramedics exactly what device your parent has. Fever, no urine draining, a stoma that turns purple or black, or an ileostomy pouch that stays empty for hours are reasons to call the provider, not to wait and see. Anything that looks like an emergency is a 911 call.

Most guides are written for the patient. This one is for the person who gets the phone call.

First, know which device your parent has

Plenty of families just say "the bag." The ER will want the actual type, and so will the supplier when you reorder.

Urinary catheters

MedlinePlus's urinary catheters page lists three main types:

• Indwelling catheter. Left in the bladder and connected to a drainage bag. A Foley is a common type; a small balloon inside the bladder keeps it from sliding out. Most go in through the urethra. A suprapubic catheter is an indwelling catheter placed through a small hole in the lower belly instead.
• Condom catheter. For men: a condom-like device over the penis, with a tube to a drainage bag and nothing placed inside.
• Intermittent catheter. Your parent or a caregiver inserts it to drain the bladder, then removes it, once or several times a day.

MedlinePlus also notes that catheters come in many sizes, in materials including latex and silicone, with straight or coude (bent) tips. Those details go on the sheet.

Ostomies

The United Ostomy Associations of America (UOAA) says the three main types are colostomy, ileostomy and urostomy, and that an ostomy may be temporary or permanent.

• Colostomy. Part of the colon (large intestine) is brought through the belly wall to make a stoma.
• Ileostomy. The end of the small intestine is brought through the belly wall. The NIDDK says the entire large intestine is bypassed or removed.
• Urostomy. UOAA's urostomy page says it diverts urine through a stoma when the bladder isn't working or has been removed.

With a continent diversion, such as a continent ileostomy or continent urostomy, there's no outside pouch; the internal pouch is drained several times a day by passing a catheter through the stoma, per the NIDDK and UOAA. If that's your parent, write it in big letters.

Catheter warning signs: when to call the doctor

MedlinePlus's indwelling catheter care page says a urinary tract infection is the most common problem with an indwelling catheter. Call the provider for:

• Fever or chills, pain in the sides or lower back, or burning or pain in the bladder or pelvis
• Urine that smells bad, is cloudy or a different color, or has blood, grit or stones in it
• Discharge where the catheter goes in, or pain near the catheter
• Urine leaking around the catheter, or a bag filling much faster than usual
• A catheter that seems blocked and isn't draining
• Not feeling like themselves: tired, achy, having a hard time focusing

MedlinePlus's general catheter page adds bladder spasms that don't go away, bleeding into or around the catheter, and "very little or no urine draining from the catheter" while your parent is drinking enough. It also says a catheter that becomes clogged, painful or infected "will need to be replaced right away." So a blocked catheter on a Saturday night means a phone call tonight, not a note for Monday.

The CDC's CAUTI basics page (catheter-associated urinary tract infection) lists burning or pain below the stomach, fever, burning while peeing and peeing more often. It calls "prolonged use of a urinary catheter" the most important risk factor and suggests asking providers often whether the catheter is still needed.

Watch the "not feeling like themselves" sign from the first list. In an older parent, an infection can sometimes show up as new confusion. Our guide to sudden confusion, UTIs and sepsis covers when that becomes an ER trip.

Suprapubic catheter: the one that can't wait

MedlinePlus's suprapubic catheter care page has a line every family should know: if a change is going badly, contact the provider right away, and "do not remove the suprapubic catheter because the hole in your belly can close up quickly." If the catheter is already out and can't be put back, it says to call the provider or go to the local emergency room. The same page says a suprapubic catheter typically needs changing about every 4 to 6 weeks; ask the care team what schedule your parent's follows.

Ostomy warning signs: when to call

MedlinePlus's ileostomy stoma care page says a healthy stoma is pink or red, moist and a little shiny. It says to contact the provider if:

• The stoma is swollen more than a half inch larger than normal, or pulling in below skin level
• It's bleeding more than usual, or has turned purple, black or white
• It's leaking often, no longer fits, or the appliance needs changing every day or two
• There are signs of dehydration: dry mouth, urinating less often, feeling lightheaded or weak
• Diarrhea won't go away, or output is more than 2,000 mL in a day

For a urostomy, MedlinePlus's urostomy care page adds a stoma that is purple, gray or black, dry or pulling away from the skin, plus less urine than usual, fever or pain.

Blockage and dehydration

"Nothing coming out" doesn't sound urgent, so families miss it. MedlinePlus's ileostomy discharge instructions say signs of blockage include sudden cramping, a swollen stoma, nausea with or without vomiting, and a sudden increase of very watery output. Short quiet spells are normal, but contact the provider right away if the bag stays empty longer than 4 to 6 hours, and "do not just take a laxative."

The NIDDK's complications page says to seek medical help right away for changes in a stoma's size, shape, color or odor; heavy bleeding that doesn't stop; belly cramping lasting more than 2 or 3 hours; severe nausea and vomiting; no gas or stool for more than 4 to 6 hours with cramping and nausea; and severe watery output. Dehydration, it says, is more common when the whole large intestine was removed or bypassed, as with an ileostomy. Our dehydration guide has the signs to watch for in an older adult.

What not to do at home

• Don't force a catheter. MedlinePlus's self-catheterization instructions say to start over if it isn't going in well.
• Don't pull a suprapubic catheter out, for the reason above.
• Don't tug, twist or kink the tubing, per the CDC, which also says to keep the bag below bladder level.
• Never stick anything into a stoma unless the doctor says to, per MedlinePlus's stoma care page.
• Don't reach for a laxative when an ileostomy stops putting out. Call instead.
• Don't freelance. Changing the catheter, adjusting the balloon or switching products is for the care team, unless they've taught you or your parent exactly how. Checking for kinks is fine. Beyond that, call.

With an ileostomy, MedlinePlus notes some coated pills may not absorb well and suggests asking the provider or pharmacist. Ask; don't change anything at home.

Supplies and the emergency kit

UOAA's guide to knowing your pouching system says the most important thing to know when ordering is the order number for the supplies, and to include "the pouching system product, size, and product number." Do the same for catheter supplies.

What to write down

Size and balloon matter: MedlinePlus lists a too-small catheter and the wrong balloon size among causes of leaking.

What goes in the kit

Using MedlinePlus's supply lists for suprapubic catheters and changing an ostomy pouch as a starting point, here's what we'd put in a grab bag:

• Catheter supplies the care team uses, plus a spare drainage bag (leg and night)
• For intermittent catheters: enough catheters for several days, lubricant and wipes
• Two or more full ostomy changes: pouches or wafers, clip, paste or ring seal, powder, skin wipes
• Measuring card and small scissors if wafers are cut to fit
• Gloves, small plastic bags for disposal, paper towels
• A printed copy of the supply list with product numbers
• The emergency information sheet (more below)

How many days? The sources we checked don't give a number for these supplies, so ask the care team. FEMA's Ready.gov disability page asks whether a person could "make it on your own for several days." In hurricane or wildfire country, order ahead of the season, since mail can stall.

Where reorders come from

MedlinePlus says a provider can send a prescription to a mail-order supply company. UOAA's supply information page names three kinds of ostomy suppliers: medical supply houses, mail-order companies and pharmacies. Its pouching system guide suggests a backup supplier in case the usual one has a disruption or a back-order. Write both down.

Medicare and supplies

Medicare.gov says Part B covers medically necessary ostomy supplies under the prosthetic device benefit if your parent has had a colostomy, ileostomy or urinary ostomy, and covers "the amount of supplies your doctor or other health care provider says you need, based on your condition." For catheters, Medicare's prosthetic devices page says Part B covers prosthetic devices when a provider orders them and lists urological supplies among its examples. It says Medicare only pays for a prosthetic device from a supplier that participates in Medicare.

For ostomy supplies, UOAA says Medicare and many HMOs impose certain restrictions on purchases, suggests asking whether a supplier accepts Medicare assignment, and says to check with the insurer about which suppliers you can use. With a Medicare Advantage plan, call the number on the card. Medicare's disaster page says that with Original Medicare, in most cases it will cover repairing or replacing equipment or supplies it paid for that were lost or damaged in a disaster, but only through a Medicare-approved supplier. Our Medicare documents guide covers which cards and letters to keep.

What to tell paramedics and the ER

UOAA's medical ID page shares a real example: a man with an ileostomy was hit by a car, not badly hurt, but his pouch burst. Responders assumed a perforated abdomen and spent time cutting away clothing. The same page warns that if responders don't know an internal pouch such as a Kock pouch needs draining by catheter, it could overfill and be damaged.

So the sheet needs specifics. The American Cancer Society's hospital stay guidance says to ask that the chart list the type of ostomy, the routine and products used, and any procedures your parent should not have. It warns that not all hospital staff know much about ostomies and the hospital may not have your parent's type of supplies, so bring them.

For a catheter, write:

1. Type: indwelling urethral, suprapubic, intermittent or condom
2. Why it's there, if known (retention, incontinence, after surgery)
3. Size, tip and material, plus any latex allergy
4. Date placed and date last changed
5. Who manages it: urologist, home health nurse or clinic, with phone numbers

For an ostomy, write:

1. Type: colostomy, ileostomy, urostomy or a continent pouch that's drained by catheter
2. Surgery type and date, and the surgeon's name
3. Temporary or permanent, if you know
4. Pouching system, wafer size and product numbers
5. Who manages it: the surgeon, a wound, ostomy and continence (WOC) nurse, or home health
6. Your parent's normal output and stoma color

Then add the usual: medicines, allergies, conditions, code status and contacts. Our emergency information sheet for paramedics shows how to fit it on one page, and what to bring to the ER covers the bag. For a new catheter or stoma, use the hospital discharge checklist, and get the product codes for the hospital's supplies before leaving, as UOAA advises.

Travel and power outages

For flying, UOAA's travel tips say to pack ostomy supplies in at least two places, carry-on and checked, with extra in case of being stranded, and to call TSA Cares at least 72 hours ahead at (855) 787-2227 with screening concerns. The page also has a printable travel communication card.

Catheters and pouches don't need electricity, a small mercy. An outage still means a dark bathroom, so keep a flashlight with the kit and plan for clean water, since MedlinePlus's care steps rely on soap and water. If your parent also uses powered equipment, see our power outage plan for medical equipment.

Frequently asked questions

When should someone with a catheter go to the ER?

If the catheter is blocked and checking for kinks doesn't fix it, call the provider tonight, since MedlinePlus says a clogged catheter needs replacing right away. MedlinePlus also says a suprapubic catheter that has come out and can't go back in means calling the provider or going to the ER. New confusion can be a sign of infection, and anything that looks like an emergency is a 911 call.

What color should a healthy stoma be?

MedlinePlus says pink or red, moist and a little shiny. Its ostomy pages list purple, black, gray or white as reasons to contact the provider, and the NIDDK says to seek medical help right away for a change in stoma color. So if the color changes, call the provider right away, and call 911 for anything that looks like an emergency.

How long can an ileostomy go without output?

MedlinePlus says to contact the provider right away if the bag stays empty longer than 4 to 6 hours.

Pulling it together

You can build this yourself with the lists above and a photo of the box labels. Or let Emergency Binder Now do the organizing: answer guided questions for about 25 minutes and you get a printable binder with your parent's conditions, medicines, doctors and contacts, a one-page Emergency Information Sheet for paramedics and the ER where the catheter or ostomy details belong, and a list of what's still missing, like the product number nobody wrote down. You can see a sample binder first.

This article is general information, not medical advice. Your parent's urologist, surgeon or ostomy nurse sets the care routine, supplies and warning signs for their device, and their instructions come first.