Long term travelling with IC

[Isabel_C]

Hey everyone,

I'm 21, from London, UK and have been given a preliminary diagnosis of IC. I am having a cystoscopy w/hydrodistension and biopsy in a couple of weeks to confirm but I'm pretty certain this is what I have.

My IC seems to be pretty mild. I have a little pain, usually just twinges here there and day to day only have to go about 5-6 times a day. I have been broadly following the diet for a few weeks now (admittedly with slip ups) and have been taking 20mg of amitriptyline per night which seems to help, especially with sleep. My main complaint is bladder pressure, usually when im stressed and with that some urgency. I do have to keep my stress levels under control as that (along with alcohol) seems to be my main trigger.

I'm about to graduate from university and for a long time now had planned to earn some money for a few months and then go travelling in America with my boyfriend next year...initially I was really keen to go to North America and Canada and my bf wanted to travel through South America. With IC however I'm not sure if I feel comfortable long term travelling in South America because of limited facilities...I have some friends who have been and have told me about 11 hour bus trips without toilets and that all just sounds too stressful. So at the moment we're looking at travelling through the West Coast of USA, specifically pacific north west (Oregon and Washington) and up through Vancouver. I was wondering if anyone has had any experience with travelling and IC. I know a lot of people get flares from sitting in cars for too long...that doesn't really seem to be a problem for me, but I have tended to flare a bit on holiday, even before I knew what I was dealing with, mainly I think because of the general stress of travelling and not knowing where the nearest toilets are. I recently had a short break in Barcelona and whilst I really enjoyed myself, my bladder was definitely acting up a lot. So...I know it's a long shot but just wondered if anyone had any advice. Also because most of you are from the US, what are toilet facilities like on roads and what's the transport like? We may be hiring a car but we may also rely on trains and/or buses. I've heard a lot about Greyhound buses, do these have good facilities?

Thank you so much for reading, if anyone has any suggestions I'd love to hear them.

Isabel

[statesboro]

I will state that I have never been to the UK. OK. I am glad to know you will be graduating. Also, I would figure you would have to earn some money before doing all of that traveling. By the way, I have not done much traveling since being diagnosed back in 1997. Yep! I don't live on the West Coast, either. Oh! I still wanted to know I had read it all. Besides, I don't know about riding on a Greyhound too much. I wish I just peed 5-6 times daily. That would not bother me. I do realize you are not officially diagnosed yet. Oh! I have never been to Canada, either. Geez! I am not helping much. I don't see how anybody could do an 11 hour bus trip with no bathroom at all. I am a male, by the way. I have stopped to use the bathroom at many places by now. I have found some restrooms to be nice, and I have found some that were not nice. (like I would have left without peeing if I was not in need of relief so bad) OK. I will let that be all now.

[dollie]

Hi Isabel.

that sounds like fun! I live in Canada and have taken the Greyhound a number of times. They have fairly decent washrooms. :)

You and your boyfriend will have a wonderful time. Make sure you keep hydrated on your trip and carry any meds you might need with you at all times. I'm sure you will be fine!

I'm supposed to be traveling alone to Milan for work in the new year and am a bit nervous as well. I had the hydro/cysto done today to confirm a diagnosis of mild IC (the procedure wasn't nearly as bad as I had anticipated) and am thinking that things can only get better from here.

All the best!

[ICNDonna]

I can tell you that in the Northwest and all along the west coast, the restroom facilities are very good. There are frequest rest areas on the main highways.

Donna

[babygirl1071]

Hi Isabel,

I was lucky enough to be able to see a lot of Europe while in the Navy. I have been to London, Portsmouth and Edinburgh (my fav). About a year ago I discovered Strongbow here in the U.S. after having it in the U.K. I was so excited because I loved it!!! Unfortunately, I've had to give up drinking recently due to some issues with my IC. I was stationed in San Diego, CA for 2 years and had a lot of fun there. If it's not on you list of stopped, I recommend adding it.

Melissa

[orchid53]

I never used the bathroom on the actual bus but they do stop every 2 hours or so. If you have the means, I found restrooms on Amtrak trains to be clean and, I haven't taken it but there is supposed to be a really beautiful route in the Pacific Northwest.