Help- I am supposed to be flying 30 hour trip

[MidnightMoon]

I saw a specialist recently
she wrote down Painful Bladder Syndrome. I know its same as IC

Anyway i am supposed to be flying for 2 12 hour flights in a row then anotehr 1.5 hour one.
30 odd hours in total travelling.

I am SCARED its going to crank up and hurt.

I cant bear to go on a train it hurts so bad last time.
Buses hurt but they are short trips
underground not too bad, is a short trip.

Right now I am having some pain, its about a 5 on the scale but i am dopped up on neurfen and panadol.

I am worried it will flare like on a train. I would be screaming in torture all the 30 hours if that is the case.

Does flying hurt it. I am so scared.

Maybe I should try a short flight instead. But its too late.

[MidnightMoon]

I think im gonna have to cancel.
I am not in unbearable pain right now
but i am scared it will get worse much worse on the plane and its such a long jurney i dont think i can do it.

[kadi]

Hi Midnight Moon,
A few years ago, I flew a 2 hour flight, then an 11 hour one, then another 6 hour one. With the wait time at the airports, it was 26 hours door-to-door.

Some things that helped:

1. Making a dosage plan with a pharmacist to time my medications properly, taking extra muscle relaxant and pain medicine to make it easier. Deliberately taking the sedating medicines during the longest leg of the trip.

2. Bringing my IC seat cushion onto the plane to make sitting so long easier

3. Bringing my own food (sandwich & chips for earlier in the trip. Almonds, crackers, dried fruit bars for later in the trip)

4. Drinking hot milk at the airports between flights - got liquids into me that went through my system slower than water, so stayed hydrated longer.

5. Taking short walks & doing my physical therapy stretches in the airport between flights

6. Heating pad patch, but only after going through security (I learned the embarrassing way that they do set off the metal detectors).

7. Ipod for relaxation/guided imagery

8. Getting an aisle seat near the bathroom on the plane

Next time I would also:

9. Pack an enema or laxative into my suitcase because I had horrible constipation on arriving and on Sundays the pharmacies were almost all closed. Life would have been much easier without riding in a taxi across town to find the one open pharmacy.

10. Take as much pain medicine with me as possible - I took my usual dosage with me & then was stranded when I got a UTI on the trip and didn't have enough pain medicine during the worst flare of my life for the two weeks afterward.

11. Next time I fly that far, I will split the trip into two days, with an overnight stop somewhere to do an instillation, sleep, exercise, etc before the second leg of the journey.

12. I'll look into taking a Brita pitcher or the new Brita water bottles with me to filter my own water instead of buying bottled water. All the water sold to drink in Spain seemed to have lots of minerals added to it, which just provoked my IC more. The tap water in many places is safe to drink, so filtering it with a Brita might be ok. Obviously I'll be asking first before using this strategy.


For now, I think you need to make the decision that feels right to you, without worry about what it means about you or the future. Travel by choice is to broaden our horizons and bring us adventure, but if it will only make you feel limited, frustrated, and make you sick, then this may not be the time right now. This may be the time to experiment with shorter trips to figure out how to do the longer ones later. I was so sick when I first got IC, I was heartbroken at the thought of not traveling. Over time, though, I have been able to do it again. It's different than before IC. I have to plan better, pack more thoughtfully, get an apartment or hotel with kitchenette so I can cook my own meals when I'm there. But, I still have fun and see exciting things, meet amazing people, and practice my languages.

Before I went to Spain (the trip above), I'd already tried a 1-1/2 hour flight to San Diego, a 2 hour flight to Portland, a 2-1/2 hour flight to Vancouver BC, a 4 hour flight to Houston, and 9 hours of travel to North Carolina. Those experiences helped me create my "flight plan" to go to Málaga. It was still pretty hard, but worth it.

Whatever you decide to do, it's just for now. If you decide to go, do the planning & preparation and then decide that each day is a separate unit. If you feel well & can go out that day, great! If you don't, well - at least you're still on vacation & not at home working! Read a book, watch foreign tv, sit somewhere beautiful and people-watch.

If you decide to stay home, then what can you do that will still bring you the essence of what you like about travel? Learn a new language (there are great resources online where you can do this for free or if you have the $, the Rosetta Stone is fun or take a local class). Meetup.com has language and international exchange groups. Museums close to home can bring other countries to you But, if it's painful to think about these things instead of travel, then think of them as "for now" to get you ready for when your IC gets better and you can travel again.

My IC is not a mild case. When I first got sick, I was voiding 60x a day, barely able to work, couldn't wear jeans, had pain driving the car, couldn't sleep more than 20 minutes at a time. It was horrible and took time to resolve. Most days now I'm doing well - working fulltime as a teacher, taking a French class one night a week, exercising (when I'm not too lazy - which is not an IC issue), going to church, seeing friends. I'm telling you this to give you hope. It is possible to be very very sick, discover you're unable to take Elmiron or Atarax, and yet still get significantly better and resume good quality of life- including travel.

Wishing you better days soon & peace with your decision,

[eyeliner128]

Wow, that's an excellent post above me - great advice and kudos!


What I can add is that anytime I'm having a flare and need to go on a trip or do something active, I just use pain medication and muscle relaxers and water - but not food. Usually I'm really tired, but in okay condition enough to travel.

Of course, you should always only take the amount prescribed by your doctor, not operate machinery, etc.

I've found the single most helpful is a few tablets of low-dose Valium with a biiigg glass of water.

[MidnightMoon]

Thank you x

Thank you for your help.
I have cancelled and messed up everyones plans.
But i tried going to an emergency doctor for pain releif and he gave me menefenic acid.
And I am jut too scared to try plane for that long.

I will try a short flight first to see if it hurts likea train does.
cause train=unbearable rattling.

my husband got mad saying a plane does not bump. but he doesnt know.

I am stupid i booked the flight on homesick impulse and did not think of 'omg what about the bladder and the train bumps'
Trying to not beat myself up.

Going to doctors to DEMAND some help.
My GP has not beleived I have painful bladder syndrome. She kept on that it is over active bladder, and totally ignoring me about my pain. Its a flipping joke what cornflakes packet do some doctors get their degrees from.

Anyway NOW I have finally seen the specialist and now I have that 'painful bladder syndrome' written to my doctor, so maybe now she will listen.

What things do I need to ask from her before flying? Or even before flying, what kind of help do I get from the doctors? I have to wait for months to get the cystopy and wont see the specialist again until after that.

So, what kind of help can I get from the GP?

pain meds? What is best?
I will ask or low dose valium?(for flying only)
And what kind of pain medications is best?
And I want a doctors note so maybe the airline will be kind to me and bump me up (slim chance I am thinking) but a note to say I need access to the toliet.

And you recommend chopping up the trip with overnight stay at hotel half way through. So 12 hour flight then stop for a night, then another 12 hour flight.

Is the plane as sore making as the train? I will have to test on a short flight I am guessing.

The timing thing for pain meds is important, over international time zones how did you organise that, did you keep a watch on local time?

And the IC seat cushion, what is that exactly?

My IC is not always bad, but then again I am not working am at home, hardly go out, its stopped me from going to my meetings, from going out to the park from train journeys. Why I thought I could jump on a 30 hour flight I have no idea.

Thank you so much for your help x

[ICNDonna]

I'm so sorry you cancelled your plans. A plane ride is much smoother than a train. I don't fly often, but didn't have any problem flying from Seattle to Washington, DC or from Portland, Oregon to Hawaii.

The pillow is great because it takes the pressure away from the perineal area.

Donna

[BiblioGrrL]

Wonderful advice, Kadi!

Last month, I flew to Costa Rica (about a 5 hour flight). At that time, I was having pain and frequency issues. I told the attendant that I had a bladder infection figuring most women can relate to that. She was very nice, and told me to get up whenever I needed to do so, unless the plane was taking off or landing.

I also agree about the aisle seat! It made things much easier since I didn't have to crawl over people every time the urge hit.

[kadi]

Hi again,
The train is much worse than airplanes. I would get on a plane much more comfortably than a train. There's less bumping and shaking. The big difficulties with air travel for me are sitting for so long, staying hydrated and getting up to go to the bathroom. Also, my IC is so severe that I have to do home instillations of marcaine/sodium bicarbonate & heparin twice a day. So, if I do long flights, like the trip to Spain, I'm missing a treatment and possibly one more if the flight is delayed.

But, that said, I think you are wise to try some smaller trips first to build confidence. Treat them as opportunities to problem-solve when issues come up, rather than as tests to see if you can do it. With IC, there are inconveniences and discomforts to travel, but they can often be overcome with planning and comfort measures.

Also, the way you feel right now may not be the case once you've got a solid treatment plan in place. If you've not had a cystoscopy yet and all you have is pain medicines, you still have a way to go with creating your treatment plan to get back your quality of life. Once you have mostly good or even "ok" days at home, you'll feel more confident about traveling.

I think you've made a good decision for now. And if your husband is upset now, that's understandable, but imagine how frustrated and upset you might both be if you get in over your head on a trip you're not ready for...

Hang in there, the hardest time is in the beginning. It will get easier and there's still time for you to do all kinds of things when you're well enough to enjoy them (which is the whole idea!).

Wishing you better days soon,

[penneyjo]

I think you have had a lot of good advice. The only thing I would add, is that worrying makes it so much worse, at least for me. I can start worrying about something and it gets bigger and bigger in my mind, then I get sicker and sicker. I think that was great advice about saying you have a bladder infection to the attendant. Anyway, I hope you get to make your trip soon.

[MidnightMoon]

Thank you

Thank you all for your kind help

[jungle]

On international flights, the attendants frequently walk by offering water, but it still isn't enough for me on those long flights. Each time they come by now, I ask for two. Many people don't think to ask for that, but they always accommodate. I know that's a small tip, but it made a big difference for me on a recent trip of the same length. Best of luck to you--safe travels!