Health Organization for Pudendal Education

I have an appointment with a pn specialist in late dec in Las Vegas. I live north of Seattle. By the time I sit in airport take plane and everything else I will be sitting for 5,6, or more hours. Can't sit more than half hour . Can't stand to long either but will try to break it up as much as can. My question to you all is can I do more damage doing this? This is just for an hour consult. I'snt it amazing what us poor pn people have to go through. I may try first class or buy two seats (ouch). This guy is good but what an endeavor to see him.. .Thanks..Robert

I always purchase 2 seats because I can't sit nor stand. I'm not really tall so I can actually lay down and semi stretch out (assuming I know the person in the 3rd seat). Otherwise, I learn against the window and put my feet up on the 2nd seat. So far it has been cheaper to purchase 2 seats than to fly first class. Plus I can't lay down in the first class seats. In order to get 2 seats together I also call the airline and make arrangements for a wheelchair and that way there is a note why I have two seats together. If you do this, when you go through security you have to show them both tickets. It is so worth the money if you can afford it.

The extra seat Idea is a good one. I bought three seats in a row for my wife and I when I returned from Texas to Conn. after Bilat TG surgery.
It is also good if you can get a seat in the back of the plane so it is easier to stand for a while.
Welcome travel companions: cushions, instant ice packs, pain meds and something to keep your mind off the pain.

Hope this helps....Good Luck!
John

If you fly with instant ice packs you will need a doctors note. If you fly with ice packs that are frozen, they must be frozen, they will let them go through. You can also use the old fashioned ice bags like in the movies for a headache (you can still buy them) and once through security you just get ice at one of the food vendors. Plus, they will refill your ice bag on the plane when the ice melts. If you have an MP3 player or iPod that you can listen to music or meditation I find that keeps me distracted. I always travel with a doctors letter. A doctor's note in general to show to the stewardess that you need to move around and stand when it is ok really helps.

If you'll have a companion to help you with connecting flights and ground transportation...get some Valium and take it for the flight. Who cares if you fall asleep for a bit. Just be loopy and get through it somehow.

What does the ice do? I dont have rectum. Proctocolectomy 1991.. Does it help the sit bones? I can't sit anywhere but towards front of plane because of tinnitus and serious hyperacusis (everything is super loud) I can wear earplugs and ear muffs and still get noise through bone conduction which will still raise my tinnitus levels. Have not flown because of the fear of hearing damage but am desperate at this jucture. I like the idea of a doctors note . Do the arm rests fold down on these 737s. Thank you for all your ideas. ..Robert

For me, the ice helps keep the sitting pain, not just rectal pain, at a lower level. Valium that Celeste suggested is a great idea or Xanax. Since flying is quite difficult for a variety of reasons for you what about train? Or would the motion of the train be too much?

Train not bad idea, could check into that. would have to be sleeper. I do think i will eventually have to work out this plane thing because this stuff requires so much traveling... I could always offer somebody 50 bucks for their seat if necessary. Where there is a will there is a way..thanks for your ideas everyone...Robert

In case anyone in Canada is reading this, the law here is a little different than in the US for accommodating disabilities and medical conditions. In the US, airlines are not required to provide a second seat for free. In Canada, airlines must provide a second seat if required to accommodate a disability. I haven't actually done this yet, but I have read the legislation. The airlines were sued, as they did not want to have to do this, but they lost. In Canada, airlines must either upgrade to first class or provide a second seat in coach, if that is required to accommodate a disability. I believe this requirement applies to any plane that lands at a Canadian airport, not just Canadian airlines.

Of course, flying in Canada is so much more expensive, you can likely buy two seats on a US flight for the price of one on a Canadian flight.....

Hi, I also have had a total colectomy with protectomy with permanent ileostomy, my PN pain is typical and feels like it is in my rectum, only I don't have one ? Want to do long haul flight from Australia to London, ie. when I get better !! Am seeing a great physio here and am having mobilisations of my Sacral Iliac Joints and pelvic floor dysfuncion exercises. Peter has a great success rate with this method of treating PN. I was in a major flare when starting the treatment plus home exercises. Getting back to your colectomy, I had 9 odd years with no pain like this, do you think it has anything to do with that operation ? Would appreciate anyone coming in on this please. Best regards, Robyn K

lightmail wrote:What does the ice do? I dont have rectum. Proctocolectomy 1991.. Does it help the sit bones? I can't sit anywhere but towards front of plane because of tinnitus and serious hyperacusis (everything is super loud) I can wear earplugs and ear muffs and still get noise through bone conduction which will still raise my tinnitus levels. Have not flown because of the fear of hearing damage but am desperate at this jucture. I like the idea of a doctors note . Do the arm rests fold down on these 737s. Thank you for all your ideas. ..Robert