Reaching airlines

[icnmgrjill]

Just had a truly awful story relayed to me about an IC patient who was stuck on the tarmac on a plane for four hours and was not allowed to use the restroom. Unconscionable and absolutely agonizing for the patient who has sobbing in pain. I'm wondering what we can do to educate airline flight attendants about the desperate need for IC patients to urinate.

Honestly, were it me... I would be up in the aisle.... and demanding to use the restroom. In her case, the flight attendant said "You don't want the plane to have to go back to the gate do you?"... shocking... infuriating... and agonizing.

What should we do about it?

Jill

[jasmine3063]

Jill,
This poor woman should write a letter to the airline. I understand they were on the tarmac, but the flight attendant was just mean. If they were there that long, couldn't she have requested from the Captain, special circumstances, to run to the bathroom. They were sitting there four hours. If they were not in process of take-off, then at least she could have tried to assist her. Unfortunately, in this world, we get people that do not understand and if they have no physical issues, they don't have empathy or sympathy for anyone else that does. It upsets me and it is hard to be "politically correct" but writing a letter is the first step.

[sailawaygrl]

I know that the US passed the passenger's rights law where airlines can no longer do that. However, I just learned that doesn't apply to foreign airlines such as Virgin and others. I feel that if they want to use our airports then they should have to follow our laws! Maybe we could start by petitioning our legislators to ammend that law to include all airlines using US airports. Maybe a letter writing campaign to the airlines as well to attempt to educate these people not only for ourselves but for others with diseases that cause them such problems. I know I saw the news story recently about he Virgin plane on the tarmac for four hours at 100 degrees inside. I know for a fact with my medications I would have passed out during that time, this has got to stop!!

Sandra

[sailawaygrl]

For this very reason I am afraid to fly now with my IC. I don't know what I would do if this happened to me! Frightening.

[ICNDonna]

An attorney letter to the airline involved might have some effect. They pretty well discount any other complaints they get.

Donna

[kadi]

Thanks for reminding me to carry my IC restroom access card when I travel.
I've not had trouble when I've presented the card to flight attendants, though every year there seem to be more & more hassles, so at some point it might not work anymore.

[Katrina]

in the what should we do....well maybe we all need to be writing airlines and asking for some signatures from doctors about this. IC is not the only illness that would make "holding it" more painful and maybe we need to band together.

[CherylSLP]

I have had problems myself, but none like this. Come to think of it, the main times I have had to fight for my right to pee have been flying related. All my incidents resulted in me being allowed to use the bathroom but I must admit I got quite forceful one time. And I have gotten rude out of frustration, which I am not proud of. To be honest, I would have had that plane go back :-). Its a medical emergency just like a heart attack (ok, close).

And a normal person who does not have IC who needed to go to the bathroom would also have been in pain after 4 hours, come on now. What about a little kid? Someone with Crohn's disease or IBS? A bladder can actually burst and then you have a real problem. That woman should be fired. Safety issue not related to IC, but in this case affecting it. Not to mention, why could the restroom not be used when the plane was on the tarmac, does not make any sense?

I think some sort of education does need to be done, and its best coming from a group such as this one. Its a very real problem and I do stress about flying. Very careful what I drink when flying. Have had to use the bathroom when I wasn't supposed to in turbulance and didn't like that either. How have other groups for those with disabilities advocated for issues such as this with airlines? Would it need to involve letting the airline know when you check in? I know my friend who is blind does this (you can tell she is blind because of her face structure and her cane) so they know to seat her and the like. Could the same courtesy be applied to us? Should we just start asking for it?

Wow, this one has me fired up. Happy to help here.

[CherylSLP]

I would really like it if those restroom cards had a place for a Dr. name, a Dr. signature, a Dr. phone # and license #. Make it more real. I have offered call my Dr. while at the airport, which is when they finally let me use the bathroom.

[statesboro]

I don't know which airline that was. Regardless, I had heard that a plane was stuck on the tarmac for 4 hours with 100 degrees as well. Come on. I would have had a cow. (especially if I was sweating, too) Geez! How long did she actually have to wait? (4hours+) (maybe so) Oh! I have not tried flying ever since I got diagnosed.(no wonder) OK. I have been flown in airplanes before. If I had been the one, then I would know the flight attendant's name so that I could report the incident and see if she was being right or not. I don't see how that was right. What if she had to urinate all of a sudden? Why should a plane be on the tarmac for 4 hours to begin with? I don't understand. I would expect other passengers to be ticked as well.

[bjwright]

Not as dramatic as 4 hours. I too forgot my bathroom access needed card--never again.

The flight attendant was so callous that in frustration, I was so upset I cried. Only then did she relent. That little voice inside told me that was the only thing that would work. It was beyond embarrassing.

They received a scathing letter from me. I never heard a word back. I like Donna's attorney idea and adding doctor information to the cards eventually.

I had a "med letter" that I showed the flight attendant. Supposedly (which I highly doubt having watched her movements about the plane carefully when my restroom request was denied) she went into the cockpit and asked the captain for permission... given with a caveat about "moving about the cabin during turbulence and the airline not being responsible for any injuries...." roll eyes big time

It's also a good idea to band together with others; maybe through the Americans with Disabilities Act.....

In any case, it is DESPICABLE to deny someone restroom access for 4 hours. I've been told by a PT that it isn't healthy to wait more than 3 hours to urinate. :(

[dg2901]

Its an FAA law/regulation that doesnt allow passengers to move about the cabin while the plane is on the tarmac...its not the airlines rule. The captain has to by law follow such rules. If a passenger gets injured the first thing they'd do would be ring a lawyer, guaranteed. Sad, but true.
Having said that, I've been onboard an aircraft that was delayed on the tarmac, and needed restroom access. I had no issues with being allowed access--perhaps it was because I was calm and collected and politely explained to the flight attendant my situation. I was reminded that it was against FAA regulations and that I released the airline from liability should anything have happened. No problem.
I cant imagine that, barring an extremely dangerous situation, an attendant would deny such a request. I've flown several times with different airlines w/o issues.

[bjwright]

I very politely and CALMLY explained that I had a bladder disease, briefly what it was and encountered a very rigid attitude.

After several attempts at reasoning, there was nothing but frustration. If you haven't encountered this type of flight attendant, thank your good fortune. Many of us have and it's NOT a pleasant experience.

Been in those moccasins. Very uncomfortable. :(

[bubbe1]

First, congratulations to Cheryl!
Re the airlines, I agree that having a doctor's name and phone # on the bathroom card might help.
I have not flown in ages, mostly due to my husband's disablities, and the callousness,(sp?), that we have run into on many airlines regarding his needs. Now that I have been diagnosed with IC, I am even more hesitant to fly which is sad since our kids and grandkids live in different states,(from each other and from us).
Having said that, I agree that a letter writing campaign might be of help in making the airlines more aware of what IC is, and what it entails. The best course, though it would take a great deal of doing, would be to try to find some public venue, (like a news show, Oprah or other talk shows, etc), to explain about IC and the issues around it. Not sure any of those shows would be interested, but you never know. It always seems that big companies suddenly want to help when something becomes t.v worthy.
Anyway, just some thoughts.

Diagnosed in April of 2010
Not taking any meds yet, just using diet and waiting for an appeal resolution with my HMO. :pray:

[darlene]

I don't think the bathroom access cards have any real power. I have a very small bladder due to 41 years of IC and I also have crohn's disease that causes frequent diarrhea. Four hours without bathroom access would have caused me to have an accident. My daughter was on a flight where a woman needed to use the restroom, but was told to sit down. When she could no longer hold it, she got up to go. The flight attendant screamed "what part of sit down don't you understand?" She returned to her seat. I don't know how that turned out for her, but I think about it every time I fly.

[songbird7]

[QUOTE=darlene;546490]I don't think the bathroom access cards have any real power. I have a very small bladder due to 41 years of IC and I also have crohn's disease that causes frequent diarrhea. Four hours without bathroom access would have caused me to have an accident. {\quote**
I find the medic alert bracelet from the official medic alert site has more power than the restroom access card. It's always worked for me. They also give you a card to carry with your information on it, medicines etc.
Best wishes and God bless everyone here . IC is difficult as is peoples' reactions to it. :pray: I pray for more research to find a cure.

[LithEruiel]

Ok, four hours is a long time for anyone to wait to go to the restroom whether they have a bladder or bowel disease or not. When we go for more than an hour of class without a break lots of people get up and as far as I know, only me and a couple other people have bladder issues. What if its that time of the month too? It doesn't make any sense. Why would they wait on the tarmac for four hours? That's inhumane. Why not sit at the gate? Or better yet let people sit in the airport until there's a more realistic time to depart. I've been there though...long before I had IC (circling over Newark for three hours to the point of running low on gas and having to go to another city to refuel). I'm afraid to fly now too.

[janet.]

I know that water consumption is important for all of us, but I do try and watch it before flying. Just after my initial IC symptoms started (prior to my diagnosis), I had 2 flights within about 1 mo. Just prior to boarding, they announced there was no bathroom available on the plane (out of order). I wrote a letter to US Air and received 100 miles (gee thanks). This is another obstacle for work issues. These were business trips so I had no choice. It is VERY frustrating having such a big obstacle on a daily basis when people just don't get it. (I do recommend getting a "Restroom Access Card" from the ICN.).

[LithEruiel]

How long was the flight with no restroom Janet? That's crazy!

It doesn't seem like it matters how much water I drink a lot of the time...sometimes even if I don't drink much my body decides to get rid of whatever it's been holding on to at random times. I talked to my doctor about it and she said not to worry about it, but its really terrible at times! It seems stress induced as well...

[mary124]

I haven't had to fly in ages - I think the last time was right before my heart surgery (but I had IC long before that). 4 hours is a long time to wait for anyone! Couldn't they let her off the plane so she can use the restrooms inside the airport or something? I do think a letter to the airlines is in order.

[Aza]

I used to love flying, but since being diagnosed with IC it is like an exercize in torture for me. I have tried everything- strong painkillers, sleeping pills, pillows etc. and nothing relieves the pain. One time, during an 11hr flight, it got so bad i appeared to be having some kind of severe allergic reaction and they had to shoot me with an epi-pen. After an hour or two in the air it is agony even to sit in my seat and i just wander up and down the isles, visiting the toilet every 20 minutes or so. The 4 hour story is literally my idea of hell. I would have gone into a panic within an hour of being forced to sit it my seat.

It is hard because, as some people have said, there are plenty of perfectly reasonable aircrew who will help you out if they can and are happy to bend the rules a little for passengers who need it. Many have been very helpful towards me in the last year.

Unfortunately, there are a minority who seem to like to abuse their power without any regard for the suffering they are causing. It doesn't matter how "polite and calm" you are, they do not care! I am literally terrified of travelling for this reason.

I think suggestions of having a space so the access cards can be officially filled in by your Dr is a good idea. Thanks also for the suggestion someone gave about a Drs letter- it may or may not help but i am definately going to get my Dr to write a letter for me to carry when travelling.

[LithEruiel]

I may be going to England next year which I'm really excited about, but I don't know what to do about the plane situation. To go overseas we have to fly to a larger city first, then get another flight...the larger airports are the ones I'm most worried about... Like Aza said, I'd be in a panic long before the four hours. Whenever I'm worried about not having bathroom access I have to go much more often then I would otherwise.

Unfortunately most of the places I want to go in the world are not places I can drive to...

I think adding the dr's signature/contact info to the bathroom access card is a really good idea too.

[bubbe1]

Songbird, I think the medic alert bracelet is wonderful idea. I hadn't thought of that, but am going to look into it now.
Thanks! :smile tee

[snowgirl]

An attorney letter to the airline involved might have some effect. They pretty well discount any other complaints they get.

Donna

I totally agree with Donna and was thinking something legal as well. I would say violation of American Disablity Act something on those lines> An attorney would know . This is not right. I put myself in this persons place no way I could wait 4hrs to urinate. I would be in tears and pain as well. I would be so angry yes I would go talk to an attorney for free 30 minute consultation.

No human being should be denied bathroom access on tarmac and 4hrs worth. Yes I thought they passed a law they airlines could not do this anymore.
Maybe her local new might be interested in her story?

[Mothergoose]

I am a pretty forward person and I can hold my own with the best of them. I was on a flight that was a bit ruff and the seat belt sign was on and I got up to go to the bathroom only to have my way blocked and told to go sit down. I explained I had a medical problem, she didnèt care it was not safe. I said it was beyond my control I had already pushed myself to my limit and I needed to go. She firmly told no, so I pushed past her, I think she realized I would fight if I had too. She threated I just ignored her and went and got my much needed releif.

But I felt terrible it had to come to that.

MG

[LithEruiel]

Well good for you MG!

[kadi]

I had a similar experience to MG's several years ago. The flight attendant told me to sit down & explained that a colleague of hers cracked several vertebrae in her neck due being on her feet during turbulance. I thanked her for the warning & went as quickly as I could. I do think that sometimes they're being rude & insensitive, but sometimes they are genuinely trying to keep us and themselves safe.

On a brighter note...
I had a really positive experience this week with my air travel. We were already boarding the plane in Chattanooga when we found out that our destination airport at Charlotte was not allowing incoming or outgoing flights due to storm. The US Airways staff was great about getting everyone back into the airport to wait there with comfortable seats, restrooms, & snack bar. They kept us updated & were very nice & patient with everyone. They politely rescheduled me for another flight when I realized I would miss my connecting flight & in spite of leaving Chattanooga 3 hours late, I arrived home only 1-1/2 hours later than planned.

One thing I learned this trip is that it made life much much easier to fed-ex my instillation supplies to a friend or relative at my destination before the trip so I didn't have to explain them to multiple security staff at the airport. It was so nice to just sail through security! I've taken my instillation supplies & meds through security on all my other flights in the last 5 years & it does add to the stress of travel. I don't know how exactly I'll manage this when travelling to a destination that does not have a friend there already to receive the fed ex package, but that will have to remain for now, part of the next travel adventure.

[CherylSLP]

Now that all has been said and done what do we do? I really think contacting other similar organizations is essential because larger groups have more power.

[ICNDonna]

Kadi, if you book through a travel agent, they can help. You can even have things shipped to your hotel and held for you. You'd want to verify by phone that the parcel is there before you leave home.

Donna

[Lori1975]

I have a four hour flight coming up in two days and I am terrified! I have had nothing but bad experiences on flights with needing to go to the bathroom and being denied because the pilot announced for everyone to stay in their seats with seat belts fastened. The last plain ride I was on I was in tears saying I had to go, that I had a bladder disease (which was humiliating for everyone sitting next to me to hear), and still denied! Yet the stewardesses where in the isle serving drinks and food. I was so mad! Embarrassed that everyone sitting next to me now new my whole medical history, and in so much pain that I was nearly ready to wet my pants. The guy sitting next to me said..."What are they going to do? Throw you off the plane? Go to the bathroom, and then smiled". So I got up and ran to the bathroom and when I got back nothing was said. But I was so angry, which just made my I.C. worse. And now I am about to face that again???

Thank god I am seeing my I.C. specialist the day before I leave but I am worried what can she do in one day? How do you get a medical alert bracelet? Can someone plz help me? or direct me to possible solutions so that the same thing doesn't happen to me again?

I leave Tuesday morning 7/20 ....so plz reply before then..you can send me a private message as well. Thank you all.

Lori

[kadi]

Hi Lori,
I've flown many times in my 7 years with IC. I do not have a mild case of IC, but most of the time it's fine. Your IC specialist can write a letter by hand on a prescription paper that you can hand to the flight attendant if needed. It should state that you have a rare medical condition, interstitial cystitis, and that you should be allowed restroom access whenever possible as "holding" urine can cause extreme pain. You can order a business card that has this "alert" on it from the ICN shop, but since you're leaving so soon, having your doctor write one for you would be the only way to get it on time.

I've found that if I don't have to drive on arrival, it's helpful to pre-medicate myself by taking a dose of my pain medicine & a muscle relaxant. It's also good to take an IC seat cushion onto the plane to minimize discomfort from vibrations. I also wear a large "poise" pad so that if I do leak or I really can't get up, I won't be embarrassed with wet clothes. I use the restroom right before boarding also and always request an aisle seat.

Just last week I flew cross country & back, from San Francisco to Chattanooga TN. I had no problems with restroom restrictions & got up several times during my four hour flights. I've also flown from San Francisco to Spain, San Diego, Houston, North Carolina, Portland, Vancouver BC, and out of all those flights, was never hassled about getting up to go to the restroom.

Try to think positively. Most of the time, things are ok & I hope you will have a good trip,

[Lori1975]

I have to fly in two days and am terrified. It has been 10 years since I have been to a family reunion and I promised my dieing grandmother that I would attend. So of course I have to go! It is a 4 hour flight and the last time I went flying I was humiliated, denied a bathroom twice, (the second time asking in tears) and the stewardesses were serving drinks and food yet none of the passengers were allowed to leave their seats. Finally, the young man sitting next to me hearing my whole medical history, which was humiliating enough, told me "What are they going to do throw you off the plain...I would just go". And so I did. And sat back down with nobody saying a word. Still, the anger I felt toward the rude stewardess still stays with me which only adds to I.C. pain when thought about. And now I may have to go through this again. I am terrified.

Writing letters is great...but what about the I.C. patients who are too weak to stand up. Who are on many medications..which fog our brain, and are bodies and emotions are to fragile to handle the stress of fighting the airlines, affording a lawyer to handle the case...as many of us are unemployed who can not get on Disability yet....we need a voice! Someone, who is stronger, maybe in remission, who is good with words! Someone please take action for those of us that can't atm! Thank you.

Lori :bow:

[Mothergoose]

Lori I fly lots and make long trips Seattle Japan Japan Thialand, and Seattle to Germany. I only rally had a problem the one time and i just chaulk it up to there is alway one rude perosn you have to deal with.

When i have been on long flights and get booked into an middle seat i like the ailse seat I just go up to the people working the gate and explain my problem to them and if they could could they please move me to an alise seat, for the most part I find this works.

Or I ask for a seat near to the bathroom at the back of the plane because if they start serving food at the front you have plenty of warning they are coming and going to be blocking the aslie and if they start at the back they are past you and your access to the bathroom fast.

With todays cut backs they don't spend much time serving you drinks or food now anyways. It is more the norm for people to bring along their own food and drinks.

Ussally hunmankinds prevails. Another tip is if it is a long flight and they show a movie get up just before the movie ends because lots of people get up to go to the washroom as soon as the show is over. Also if it happens to be to when the flight is close to landing I get up into the lineup right away, lots of people use the bathroom to freashen up and reapply makeup etc., Just things to pay attention too. Also if a family gets ahead of you and you really need to go ask if you can go first they will all go in and then it takes forever.

Don't worry your flight will go fine and you will enjoy yourself.

MG

[Lori1975]

Thank you all for your advice. Very helpful! I didn't know about the card you can buy on this website...I will try to get that before my plane ride back. I am traveling from AZ to WI. I will be gone for 2 weeks without bladder installations (which I am used to getting twice a week) but I do have supplies to bring with me if one needs to be done at home. Just not sure if my mother can do it without injuring my urethra...although I suppose I can go to my old doctor and at least ask if they can give me one using all my materials if need be. They are pretty nice. I will also premedicate...and I never thought about another cushion for padding...thats great! Where would I find something like that....bed, bath, and beyond? And I have never worn anything other than a pad but your right...It would be good to travel with something just in case I do have an accident. Oh I love you people! You have calmed my nerves so much.

I can't thank you enough for your kind words, support, advice, and time you put into getting back to me so promptly. Bless you all and I wish you the best!

Lori

[icnm]

A similar situation happened to me while flying. After writing the airline and educating them regarding IC and that it is an invisible disability, they changed the way they handle these situations. When booking a flight, they have placed a handicap icon which includes preboarding due to a disability including invisible disabilities. While flying in the states and on international flights, I carry the Airlines specific Carrier Access Act, a letter from my doctor explaining why I need to preboard and need access to the lavatory, handicap placard, and restroom access card. Also, after having so many issues flying..especially out of NY, I now request I can walk but need wheelchair until boarding. Once a person uses a wheelchair, there are NO questions asked and when I explain I have a bladder disease and it is necessary for me to us the lavatory often, there have no longer been any issues. If I am not able to obtain an aisle seat, I call the airlines, explain the situation and they change my seating to an aisle seat. I preboard so that I can go to the lavatory before the flight takes off...sometimes I may have to go several times prior to the plane leaving the gate. Now the flight attendants are very accommodating, even the stern ones. A person does not need a handicap placard in order to use a wheelchair. Just explain you have an invisible disability. On an international flight, the airport attendant happened to see my handicap placard, even though I had not shown it to him, took me and those with me to the disability area and processed us through all of customs, etc with the greatest of ease.

[Lori1975]

Thank you for the advice ICNM. I have already booked the eticket but will definitely look into booking the ticket and check marking invisible disabilities. However, I have not been considered disabled yet. I am trying to get on disability but have been denied twice and it will take 12-24 months my lawyer tells me, before we can go to court. So that won't happen for a while. But I am going to get a doctor's note and I have ordered the I.C. restroom cards from this website..so hopefully I can use that on my trip home. Thank you so much for your advice as everyone has been so helpful and given me quite a few resources to check into for next time I fly to see my family. Right now all I can do is get what I can get done within the next couple days. Take care.

Lori

[some_guy]

Just had a truly awful story relayed to me about an IC patient who was stuck on the tarmac on a plane for four hours and was not allowed to use the restroom. Unconscionable and absolutely agonizing for the patient who has sobbing in pain. I'm wondering what we can do to educate airline flight attendants about the desperate need for IC patients to urinate.

Honestly, were it me... I would be up in the aisle.... and demanding to use the restroom. In her case, the flight attendant said "You don't want the plane to have to go back to the gate do you?"... shocking... infuriating... and agonizing.

What should we do about it?

Jill



Jill,

This is horrible, here is what every IC person should do. Have your doctor write you a note on prescription pad explaining that you have medical condition (named or not named you decide) that require that you be able to use the rest room as medical emergency.

I have a note that says I need to be able to use rest room as medical emergency and that I may need to stand as medical emergency. I show it and ask for medical boarding sleeve (depends on airline) at the booth at the terminal where your plane is boarding. Sometimes I tell flight attendant right when I walk into plane that I may need to stand or use restroom under medical emergency, sometimes I don't tell them right away but if I need to I will pull out the note and simply say medical emergency, rarely will they look at the note but always they wave me on to do what i need to do.

[Tala]

No human being should be denied bathroom access on tarmac and 4hrs worth. Yes I thought they passed a law they airlines could not do this anymore.
Maybe her local new might be interested in her story?

It really does seem that laws and policies get changed only when problems with them are broadcast via the media.
Public opinion often gets results on the issues, so I would tell her, "go for it!"

Someone would do a story on her experience, if simply because it shows the ridiculous (especially airline) laws our government has enacted to 'protect' us. :rant:

[icnm]

Thank you for the advice ICNM. I have already booked the eticket but will definitely look into booking the ticket and check marking invisible disabilities. However, I have not been considered disabled yet. I am trying to get on disability but have been denied twice and it will take 12-24 months my lawyer tells me, before we can go to court. So that won't happen for a while. But I am going to get a doctor's note and I have ordered the I.C. restroom cards from this website..so hopefully I can use that on my trip home. Thank you so much for your advice as everyone has been so helpful and given me quite a few resources to check into for next time I fly to see my family. Right now all I can do is get what I can get done within the next couple days. Take care.

Lori
Lori, it's okay if you have not received permanent disability...the airlines do not require that proof. Even w/an Eticket, you can call the airline and tell them of your health issue. They will make a note in the computer. When you get to the airport, inform them you have a bladder disease that makes it difficult for you to stand in line, etc...whatever the issue is...then at the gate, speak to the attendants behind the desk regarding the issue, and then because of being able to preboard, you have time to go to the flight attendant who is nearest a lavatory...I always sent near the back lavatory in an aisle seat so I'm out of everyone's way...and explain the health issue to them. Since I have been doing all of the above, I no longer have issues w/the airlines. I try to keep it simple and to the point. I try to make a joke out of it when I'm going for the umpteenth time..Like.."I told you that you would be seeing me often going to the lavatory"...some will actually say, "I was just thinking about you."

I use the restroom in the terminal prior to boarding, and then as soon as I put my things in my seat on the plane, head for the lavatory. A flight attendant once told me that the "Terminal has nice restrooms." I popped back...."I know, I used them prior to boarding" then tell them I have a bladder disease....she did a quick turn around and was very nice to me the rest of the flight. I ask if they have ever had a bladder infection..have not had one that has said no yet..I explain it's like having a bladder infection 24/7 but no bacteria..that usually peaks their interest and they ask more about what I have.

[ROXALY]

Hi. I recently flew and even with my I/C card the flight attendant was very rude. She informed me that The fasten seatbelt sign was on for a reason. I explained I was in pain and after some coaxing she allowed me to go into the restroom. I dont know what can be done, but would love to do something.

[cosake]

This is a horrible thing to have happen. It reminds me of my worst nightmare that really happened.

Stuck in Boston tunnel, have to pee, nowhere to pull off and go and a van full of teenagers and a teacher on a field trip. (This was before I was suspected of having IC). We sat in traffic for almost 2 hours and I almost vomited I had to go so bad. I ended up throwing out my back and pulled all of the muscles in my legs from trying to keep from peeing my pants. Luckily another parent was behind us. Pulled over out of the tunnel and squatted in her back seat with a Dunkin' Donuts cup to pee in. Kept my back to traffic. Didn't really care if anyone saw me, though, because it hurt so bad.

I cannot imagine not being able to go for 4 hours !!!!!

I keep thinking about buying some pads to keep on hand just in case I think I might need them; and I've looked into some of the portable johns but haven't bought any yet. I know the johns wouldn't be useful on the plane, but wearing a pad as "insurance" could.

[ckyott]

I had this happen to me. The stewardess tried to stop me from using the restroom. I told her that I had a medical condition and that I didn't have a choice. She tried again and I told her that I was using the restroom, was happy to have the Sky Marshall do his job and for her to send him over- after I got out! When I got out she didn't say a thing, I sat down and everything was fine. I do have qualms about long flights where I have to get up every 30 minutes, but I do it anyway. I do wear a very heavy pad to fly, just in case! But I agree that not only IC patients should not have to wait hours without restroom availability. If there isn't a law to allow restroom use while on the tarmac, then we need to lobby for one.

[bubbe1]

Bill of Rights - rules for airlines

I thought this might be helpful.

The DOT's rules now state that any plane which spends more than three hours on a tarmac is required to go back to the gate and allow the passengers to de-plane. Failure to do so will result in a $27,500 fine per passenger. For the major airlines with large aircraft like Continental, Delta, United, American, US Airways and others, this could mean huge fines - millions of dollars - if they fail to comply.

In addition to this, food and drinking water must be made available to passengers within two hours of being delayed. Lavatory facilities must be made available and the airlines must be willing to provide medical treatment if necessary.

Currently, there are some exceptions to these guidelines. If the safety or security of an aircraft or the passengers are at risk, airlines can be made exempt from the rules. Also, air traffic control can advise the pilot of a need to keep the aircraft where it is. Other exceptions are being explored for reasons such as delays due to airport construction and other needs.

Warnings and impact on airline passengers

While many airline passenger rights groups are excited, travelers need to be prepared for other consequences of this bill of rights. The major airlines are not happy about the new rules and warn that this could be a big hindrance and lead to the disruption of flights altogether. If a plane is set to return to the gate and passengers de-plane, this could lead to the last-minute cancellation of flights.

Another factor is the contracts of flight attendants and pilots. A crews' hours can be increased by 4 to 6 hours once a plane has left the gate and the doors are closed. However, if an aircraft de-planes, then the crew goes back to their regular hours and may need to time out before they can take off, further delaying a flight that has to go back to the gate.

Note that the new rules were passed by the Department of Transportation and that legislation for a Passenger Bill of Rights is currently being debated in Congress. The new rules could change with a new administration or new Secretary of Transportation as these are not laws. The airline has issued their warnings like cancellations and time out for crews to try and kill the current legislation in Congress.

Travelers - what can you do to protect yourself?

Many of the long delays that occur now are due to weather. With these new rules in effect, there may be some likely cancellation of flights because of weather factors. Airline passengers should try and avoid booking flights through airports known for weather delays to avoid these possible delays in light of the new rules.

Check out customer service ratings of airlines and on-time performance. This will let you know which airlines are best at arriving on time (and taking off on time) and which will work with you when something goes wrong. If these delays or cancellations happen, it might be a big hassle for travelers and the airlines to re-book people when the number of flights are already down.

Finally, help the DOT enforce the rules. Be a whistle blower by contacting FlyerRights.org if your plane is delayed for over three hours on the tarmac. Use the devices you have available to you to keep track of time. There are a number of handy apps you can use to do this for you as well.

The first step

This is a first step in the right direction with the Department of Transportation's Passenger Bill of Rights. However, this is only the first step as there is still legislation in Congress to draft an official Passenger Bill of Rights that would become law. Realize that many airlines are going to do their best to avoid these fines and this could lead to some cancellation of flights as a result. If fines for an airline become too frequent, could there be more fees out there for airlines to charge passengers to help cover this?

While it's only the first step, this is definitely a step in the right direction to protect the rights of travelers and airline passengers.

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[bubbe1]

An interesting web site for flyers is at flyersrights.org.

[LithEruiel]

Thank you Bubbe!

[Janette Rass]

It's so sad that there have been so many of us with these incidents. I too have had a few miserable flights. One in which we had submitted a Dr's note and been promised and paid for bulkhead/aisle seats, did not happen. The flight was delayed, finally taking off at 2am and squeezing us into seats that you could not move your legs at all [and I'm not kidding our legs pushed against the seat backs], it was awful. I sobbed for 2hrs. My sons who were sitting behind were tramatized watching their Mom go thru this terrible time. I threatened to lie down in the isle and the male flight attendant then stated he would have me arrested! There should be a disabled persons bill of rights for traveling. The wheelchair idea is a valid point and worth while if you are very sick and have a hard time walking long distances [as often happens in large airports] I will use it if I'm ever in a flare and have to travel. I now use a 'poise' pad ever since I was denied bathroom use as we waited on the tarmac! I use a cane as this allows me to walk slowly without feeling pressured to "get a move on", no jarring that bladder! you know. This often will get you thru security lines faster, boarding earlier etc. You can get neat ravelling canes that fold for convienience now. Hope this helps. Good luck on your next flight! :hi:

[alycat]

I didn't even know about any of these tactics! I haven't flown for nearly 2 years because of my IC, and the high level of stress and pain that flying causes me.

Also, slightly off topic, but the comment about the wheelchair reminded me. If you're ever in Disneyland, can't stand in those 4 hour lines, get a wheelchair!! I managed to do a Disneyworld trip my senior year (before I'd finally been diagnosed. The plane ride to and back was horrible.), and the only way I know I made it through was one of my friends was in a wheelchair because of knee surgery. You get through the lines in at least half the time if there is a wheelchair in your group! Definetly going to try the wheelchair/disability thing next time I fly. I had to give up visiting my brother this year because I was too afraid to fly.

[bjwright]

Thanks for those great traveling tips! I finally got a handicap placard b/c of PFD and what a Godsend that is!

[outbackdogs]

I fly often & always take my cane with me that I still have from 2 spinal surgeries, I have a Handicap code on my flight profiles with Continental & Jet Blue, as soon as I get on the plane I speak to the head flight attendant & explain my condition, so far I have never been denied bathroom access, although in bad turbulence, they do warn me of the risks/dangers.
I do take an extra dose of Xanax & Prosed d/s, only drink water & nothing carbonated before my flight.
I have IC, Vulvodynia, Failed Back Syndrome, Fibro Myalgia, a loss of knee cartilage.