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Hi All

I'm Luke & have been on Dr Brizman's programme for 10 months now.

I had IC symptoms for 3 months back in 2005, 3 weeks in 2006 & all the time since Sep 07.

I finally flew from London to LA in Jan 08

I have seen some really good improvement since April, but I still do have some bad periods. It feels like it will never fully go!

I stick to the diet & tolerate most foods. Oddly, I have never noticed my symptoms getting worse after food, except when it has spices in it.

I dont suffer from pain, but more urgency & frequency ( which in itself causes a feeling of pain I guess)

I have an concurrent condition called Migraine Dizziness, for which I have been successfully treated by western meds before. It came back in May of this year during treatment & hasnt left since. I'm sure the meds I take for it are preventing my bladder from healing, but the dizziness is very debilitating ( I need to work).

I'm going travelling next year, so keeping to the diet will be a massive challenge, but I am going to try my best. Its been such a horrid year, I really need to get away & enjoy my life.

On that note, does anyone have any tips to travelling with pro biotics? I need to work out a way to keep them cool!

Luke

icnot4me's picture
icnot4me

Welcome!  As far as traveling with probiotics, matia once had me take a plastic container with tight fitting lid, fill it with ice, and stick the bottle in the middle, put that in my suitcase.  It depends on how far you are traveling, also any airline rules about carrying liquids.  I was almost not allowed to take a small cooler with cold gel packs in it on board. 

nicole's picture
nicole

Firs welcome to the ICAMA it's always nice to have new members. So that you don't have to deal with the airlines telling you what you can and can not have. getting a note from your dr that you need your medications to be kept cold will make certain that you will not have problems. You have to arange this ahead of your flight. Contact the airline so that you know there is no problems. Last time I flew as a handycap person with medical needs and I gave them all my information prior to flying. You don't need to actually be handycaped you just say you have special medical needs. They gave me a weelchair even though i didn't need one. It made it so much nicer because I didn't have to rush they weeled me in and I got to board first and sit in the front behind first class with all my things that I needed. So check with the airline to see how they can accomidate you. You may be supprised that to find it much easier. Btw if you tell them your handycaped you don't have to wait in the long security line most of the time they just weel you past. I have anxiety real bad and that makes it easier to handle the whole trip.
I hope you travels are safe and pleasent. It is nice to have you hear.
be well
Nicole

emmarenee's picture
emmarenee

When you say you are traveling next year are you going for an extended period of time? I know that you can get some probiotics here in the states that don't need to be kept cold. I don't think they would be on Matia's protocal but she may think they're better than nothing at all. You may even tolerate them. They are by a company called Jarrow Formula.

emmarenee's picture
emmarenee

I was wondering if you have any bladder spasms? There is a man who posted a few months ago and his symptoms are similar to yours. He says that most foods don't really bother him but that he has unrelenting bladder spasms. I've encourged him to see Dr. Brizman but so far he hasn't made that move.

Luke's picture
Luke

Hi thereNope I dont get bladder spasms as such - just irritated/itchy feeling in bladder with urgency & frequency.I've been seing Matia for 10 months now - I will ask her about the Probiotics that dont need to be refigerated , but she will prob say not a good idea.

ballerine's picture
ballerine

Welcome!
I travel all the time, it's difficult to figure out ahead of time if everything will be ok with the diet and if you will always have a fridge around. Cucumbers are amazing!! I always have plenty of them with me, they're quite tough so they don't get damaged in my bags, they're delicious, refreshing and don't need to be peeled or cooked. And every country has cucumbers lol!
Matia put me on Metagenics probiotics, ask her about them. You can keep them out of the fridge for a couple of weeks. She said they were a good probiotic. I always keep them cool, but believe me, it's great to have that much less to worry about when constantly on the road. I'm so happy for you that you will be able to get away and see the world. 
Take care!
 

nicole's picture
nicole

I think most of the probiotics can be left out of the fridge for short lenths of time. Also depending on where you are going most places this time of year it is cool enough. IF your taveling to australia or some humid place like that once you get there you may want to consider your collies. I bought myself one of those coolers that plug into the lighter in the cars. It is great I can fit about a 12 pack of cans in there so it is enough for some snacks meds or lunch. It can also be warm if I need it to be. If your on the go a lot you may look into something like that. I am not far enough in treatment where i can eat out so this was helpful when i was going out a lot.  My area is not very good for eating out I can't even seem to find much at the whole foods market so I just do my own thing.
I Hope you have a good trip.
Nicole

Luke's picture
Luke

Thanks guysI will ask her about those other probiotics - I was really worried about how I was going to transport them. I have the added problem of being away for 10 months, so getting a hold of them will be equally difficult.Oh well - cant let IC control your life forever!

nicole's picture
nicole

When i travel now if it is more then a few days I get a vacation home. I often mail myself some of the things I need to arrive the day I arrive. I don't know your agenda but you may want to just ship them to where you are staying that way you don't need to bother with flying with them. You can just take what you need for the flight. It is often the same amount of money to rent out someones home. THe only change is a deposit you would get back. This way you can go shopping when you get there and cook still. I will not vacation any other way after doing it this way.

janejones's picture
janejones

Hi Luke, I'm a fellow UK patient,just in treatment. Glad 2 hear u r well enough to go travelling. I don't know if you can have plain live yoghurt?  Perhaps that could supply at least some probiotics. One tip I read re avoiding tummy probs (like Montezuma's revenge!) while travelling was to eat the local yoghurt.Another tip while flying is to smear the nostrils with olive oil to prevent catching colds. Apparently the dry air on the plane dries out the nasal passages rendering them more susceptible to germs. I used Matia's lip balm for this purpose, on my trip back to UK from LA and didn't catch a cold. In the past I have caught colds after flying. Hope u have a great time. I think enjoying yourself is really important and makes it easier to cope with chronic problems. Be4 flying out to California I thought I would endure rather than enjoy the whole trip but after visiting Matia and a week or so in the sun I felt much more cheerful and able to cope.

Luke's picture
Luke

Hi JaneI really struggled with urgency on the way out to LA back in January. It was horrific. Bizarrly on the way back I only went to the toilet once - maybe because I was sleeping better.How long are you into your treatment? I hope you are improving. I'm at 10 months.

janejones's picture
janejones

I have emailed you.