Interstitial Cystitis Advice

By Matt Ewing

Reservations

When you make your reservations, specify that you are a disabled person or one who has a medical condition that requires convenient and immediate access to the lavatory. Ask them how they can assist you with your disability. This may include a ride to the gate in a cart, early boarding and will make your request for restroom access much more bearable!

If you can afford it, then travelling business class is the way to go. The seats are bigger, much more comfortable, offer plenty of legroom to put your feet up, and you can ease your seat further back to rest more comfortably. The restrooms have smaller lines, if any. The attendants are quicker to offer help, and the food may be better than the gruel than they serve in the low class (coach) section!

If you think that you can't afford to fly business class, then you need to be more creative to avoid flying in the coach section by using special promotions to upgrade your coach ticket at little or no cost. Ask the reservations agent for information about promotions, including using frequent flyer points. Sometimes, special offers are made only through the airline’s website if you book your flight with their online reservation system instead of using a live reservations agent.

One airline had offered to upgrade a coach seat to a business class seat for as little as $25 for those who showed up at the check-in gate early to claim any unsold business class seats. If you do this, then you'll probably get a front row seat that has a stowaway tray instead of a flip-down tray. Be sure to ask for the right-side front-row seat so that you'll have carry-on bag stowage overhead because the left side is usually filled with emergency equipment (oxygen, life rafts, etc.). Be sure to ask the reservations agent (and then the gate agent) about any of their little-publicized special offers.

If you are sitting in coach, then be prepared to be vocal about your needs. If you are uncomfortable explaining all about IC, then just tell them that you have a bladder ulcer, bladder cancer, or recent pelvic surgery. That will tip the scales in your favor. Don't worry about being bashful when describing your condition to the airline strangers. While they may not know diddlysquat about IC, they certainly will not know you from any other Jack or Jill on the street! Look at it this way: a little effort now in overcoming your bashfulness will spare you the grief of dying of embarrassment at a more inopportune time later!

Here's a clever, but risky, strategy in case you can't afford the upgrade to business class or can't find any promotional deals to get a free or cheap upgrade! You might try being the last person in the check-in line at the boarding gate and see if they might have oversold the coach seating. If so, they can put you in an empty business class seat! It worked for me once on a return flight from London, but don't you try this on a flight out to board a cruise or if you are on a tight schedule with connections! This works best for trips back home, where it might not kill you to miss a flight connection or waste a paid hotel night at your destination. One caveat: be mindful of whether your flight even has a business class section: some “discount” airlines only have one class, coach, so strategizing over an upgrade is useless.

Seat Assignments

Tell the reservations agent that you will absolutely require an aisle seat. Since you are more likely to get up more often than most others are, then you will want an aisle seat. The strategy here is that, if your seatmate needs to go, then you have the option of getting up and beating him or her to the lavatory before the line starts!

Because of frequent equipment (aircraft) changes and variations between models of the same aircraft, it is not always possible to guarantee a specific seat and/or row position. Even if you were to pinpoint an exact seat position within a particular aircraft by checking the airline's website, it is likely that your actual plane will have a different seating arrangement. There are actually dozens of seating configurations for the exact same model of aircraft. That is one reason why you will see the gate agents calling certain passengers back to the counter to have their seats reassigned.

However, you still need to work with the agent to find out what row to sit in. You may not want a seat directly across from the lavatory or in plain open-door view of the lav. Others will be banging the door and flushing away; the distraction could be horrendous! The continuous visual and audio clues could trigger urgent repeat trips on your part to the lav. Bear in mind that the flight attendants will not be cleaning the lavs between uses. It is bad enough that you have to use it… why would you want to see it, hear it, and possibly smell it...during the whole flight?

Also, you do not want a seat in the back row against the galley or bulkheads, because your seat will not tilt back. But, the seat in front of you can tilt back… right into your lap! This is not only uncomfortable, but it will interfere with your quick escape for the lav, especially if you didn't get an aisle seat!

Meal Requests

After securing your dream seat, ask the reservations agent what menu choices that are available on the flight. The default airline menus usually have many things that ICers can't eat, and you may have far more choices than either a diabetic or kosher meal. This is a well-kept secret of the airline business, so be sure to ask about the available menu choices on each leg of your flight, especially if you are on a long flight. If you are flying multiple airlines on connecting flights, then you may need to contact each airline for specific information for your flight number.

Clothing

Now that you've planned your seating and meal, think about what to wear on the flight. You won't know anyone else on the plane, so don't worry about impressing anyone with fashionable clothing! You need to wear something that is easily removable for those "emergencies." Leave the crazy jewelry and weird fashion belts in the check-in bag. Leave the bulky coat or pullover sweater at the seat. In other words: keep it simple!

You won't have much room in the lav to disrobe much less spare room to hang your excess duds. Think of it: prisoners get more space than we do on an airplane! Along those thoughts, you might have wondered if some of the other passengers who were "dressed to kill"... might have died trying to use the darn lav before they exploded! Don't become one of them!

Medications

Be prepared with your flight survival supplies! You should certainly carry two complete sets of medications along with copies of your prescriptions or doctor's letter. One set should be in your carry-on bag, and the other in your checked baggage. If the flight goes through several time zones, then keep track of the timing, so you'll stay current on your medications.

Also, take your medications before leaving for the airport to allow it time to work before your flight leaves. Asking the attendant for a glass of water to wash down your meds while the plane is taxiing down the runway is definitely not cool. On a long flight, the attendants won't refresh the lavs at all!

If you can, take a "baby" or "first aid" bag with extra paper supplies (commercial paper supplies are frequently made from recycled office paper), disposable gloves, and disinfectant wipes! While you can't take any aerosol disinfectants onboard, you can take a resealable flat pack of bathroom disinfectant wipes, along with a resealable flat pack of baby-wipes.

Due to new airline security measures, do not even think of taking any unlabelled bottles of cleaning fluids with you; they will not be allowed onboard. You could be asked by security to drink the stuff to prove that it is not lethal! This has recently happened to several women who were taking along a bottle of breastmilk for their babies!

Water

In addition to packing your own IC-friendly snacking supplies, be sure you take your own bottled water on the flight. Not all bottled waters are the same! The bottled stuff that I had on Greek Isles trip (Westerners cannot drink the city water in some places) flared my IC from the moment I landed through the end of the cruise, as the cruise ship had filled up on city water.

Avoid brands that are labeled "enhanced with minerals", such as potassium chloride (chemical symbol: KCl), a known bladder irritant that is also used to diagnose IC (by deliberately inducing a flare by instilling it into the bladder). If the bottle only lists chemical symbols, then keep looking for something that declares that it is pure spring water.

Be aware that many brands that have the word "springs" in their brand names may actually be bottled municipal (fire hydrant) water! Take your magnifying glass to the store and read the labels before purchasing any bottled water. The flight will certainly dry you out, so don't make yourself get constipated because of it. You have enough trouble as it is, already!

Heating Pads

Don't bother taking your microwaveable heating pad. Airlines cannot use microwaves onboard, due to radio frequency interference with the navigation equipment. Most aircraft have electrical sockets in the lavs, but these are for shavers, and certainly not for heating pads. A few aircraft seats have certain sockets for laptop computers, but these are also not for heating pads. In-flight electrical safety is an extremely critical issue, and you should not be testing either the aircraft's wiring or the pilot's patience.

Instead, take an empty hot water bottle and a wrapping towel, and get the attendant to fill it up for you when needed. If you don't have a hot water bottle, then you'll have to ask the attendant to please bring you a bunch of hot face towels wrapped inside of a dry towel. These hot towels are generally available on very long and international flights.

A more convenient, but expensive, option would be for you to pack several disposable heating patches, such as a ThermaCare® Menstrual Heat Wrap (http://thermacare.com/menstrualwraps.jsp), which are made to fit discretely under clothing. These patches are self-heating, need no other maintenance, and should last eight hours.

Check In

When checking-in your bags, be sure to declare your "first-aid" bag as a medical necessity, so maybe they won't count it against your carry-on bag limit. Sometimes, you can pile several smaller carry-on bags inside of a larger durable shopping bag (within the carry-on size limit), and count it as one. Most airlines won't count your pocketbook against your limit, so instead of taking a dinky purse, take a giant pocketbook and put your dinky purse and your IC supplies inside. Again, be practical, not fashionable.

You'll need to get to the gate early, so you can verify that you got a good seat, in case the aircraft is different than was originally planned. Tell the check-in agents of your condition, so you can board first, along with the old folks and little children. This should have been noted on your ticket that you had a medical handicap when you made your reservation. Did you remember to get a doctor's letter or an ICA restroom access card?

Early boarding is imperative if you got a front row seat in any section, as the overhead stowage space is at a premium. There are always idiots on every flight who have coach tickets in the rear and loathe dragging their stuff all the way to their seat, so they tend to stuff their junk in the nearest front-end bin rather than to compete for the little stowage space for the crowded coach section.

As a backup measure to insure the consideration of the gate agent for early boarding, you can always stick a pebble in your shoe and limp to the counter! (Don't remove the pebble until you have been boarded!)

Using the Lavatory

Ok, you got onboard first... now what? Work on your maximum lavatory usage strategies! Plan on using the lav first, while it is as clean as it will ever be on the flight. Do not wait until the plane closes the door to leave the gate, or you may be stuck on the ground (and in your seat) for an hour (or longer) waiting in line to take off.

In case you didn't think of going until after the plane left the gate and the attendant refuses to allow you to leave your seat (despite your pleas of a bladder disease and/or showing your bathroom access card), then you'll need to execute another strategy. Using a firm, but non-threatening, tone of voice, ask the attendant, "I have a bladder disease (or an ulcer or cancer) and I need to relieve my bladder NOW. If I can't use the lavatory, then will you please bring me a porta-potty, a urinal, or a large cup, NOW?" Be sure that you are heard. Your seat neighbors will then frown on the attendant, in fear of being seated next to a puddle of pee! Do not be bashful about it. You don't know any of the people onboard, and you will never see any of them again, either. Demand (but don’t threaten) and get relief, NOW!

After the flight takes off, ask the attendants when they will start serving food and block the aisle with the cart. Ask an attendant to warn you that food will be served in X minutes, or to give you a hint to head for the lav ahead of time. If your seat is far enough back, then you can get up as soon as the cart passes your seat, thus blocking the rest of the plane from using the rear lavs. The attendants will serve drinks during the first trip, and meals on the next trip, and again to collect the trays after the meal, so you will have three opportunities to take advantage of this cart-blocking strategy.

In case you forgot to ask for a special meal when you made your reservation, plan on going to the lav during a meal, and not after the meal, when every one else wants to wash their hands or to go potty! But, this idea only works if you got an aisle seat.

If you need yet another visit, use the lav during a movie, and not at the end, when every one else wants to go. Forget the movie; it's an old, boring, rerun anyway. (Airlines deliberately choose the most boring, non-provocative themes in order to avoid offending anyone.) You can rent the movie for less than it will cost you to dry-clean your clothes! Let every one else get carried away with it, so you won't have to stand in line later!

When the attendants dim the lights for the nappy time on a long flight, don't get carried away with the routine. Get up and go! (I remember being on one transatlantic flight where the air got very stale during the long naptime, which caused some sleeping passengers to lose consciousness due to depleted oxygen levels!) Assuming that you got the aisle seat, you'll need to program yourself to go during the nap, as well. No aisle seat… then you are in bad shape, especially if your seatmate is in a deep sleep caused by oxygen-deprivation!

Once the lav is yours, take your time! Don't give a damn about anybody else who may be waiting to use the lav, so you can eliminate a sudden return trip due to incomplete voiding. No one else onboard knows you, and you will never see any of them again. So, what do you care what they think about your problem with hogging the lav? Besides, it's their fault for not having planned any lavatory strategies! Remember this: their lack of planning does not constitute an emergency on your part to quickly leave the lav!

Finally...

Be very mindful of the post 9/11 flight security procedures and regulations, and learn to work with them rather than to circumvent them. You need to take a flight out, not an escorted walk to an interrogation room. While onboard, do not test the attendants' tolerance for your sudden bladder aberrations. The airline business has been hurting for several years now, and good service has been lacking in many areas, with many amenities and menu options being eliminated in order to save money.

Study these strategies, and commit them to memory. Never take them with you on the flight. If you lose your flight lav strategy sheet, then everyone will catch on to your game and you will suffer!

Above all, be resourceful and dry, not desperate and wet. Don’t be the one left standing with your knees crossed all day!

©2000-2005 Matt Ewing