Can I Travel With A Feeding Tube?

Howdy Everyone :)

Thanks for coming back to my blog!

This year I have been a very lucky girl and been away twice (but my bank is saying NO to anymore for now). Normally, when you book a holiday, you get a super excited feeling inside. The first holiday I booked, I was suddenly over come by huge amounts of anxiety!

Was I actually able/allowed to go away with a feeding tube? How would I get all my feed and medication and everything else that goes with it over there and across the boarder? Can the tube go in the pool? All these questions and more went through my head. I spent ages searching the internet to try and find answers. 

Now that I know ther answers and have travelled twice, I thought it would be a good idea to answer all these questions in one place for anyone else in that situation, or, maybe extra tips you never thought of or if you're just interested in it. :) I also made a video but I'm not too sure how much it helps as I just talk HAHA, so I decided to write it too!

The answer is, YES you can travel with a tube. It just requires a little more preparation than it would normally. But.... does that really matter if you get a great holiday out of it? ... I think not :) 

This is a little check list of things you gotta get/do if you want to be on your way to sun, sea and s..... sand of course. 

• Doctors letter confirming the medications you are taking, sterile water, the feed & pump you are taking, where you are going and the dates you are going. Get the to write on there that it is essential you have it with you in hand luggage as well.. that way they can't argue - well they could try but they'd have no chance :) 

• An adapter for your pump charger. If your pump got no juice.... you got no food pretty much! 

• Get yaself some form of case of bag to take on the plane for medication, giving sets, syringes, feed bottles and all that jazz. Always remember that when you work out how much medication and all the other bits and bobs you need, always take a little extra to allow for spillage's or breakage etc - this bag comes in real handy on the way home when you've used most the stuff and just end up with extra clothing space. Girllllll.... you got some major shopping to do (or guy)

• Depending on what type of tube you have but anything you use for it.... for me personally, I need good strong, waterproof tape for it which was awesome and my everyday tape anyway (Opsite Flexifix transparent tape) 

• Make sure your travel insurance covers Gastroparesis/ any condition you have. As tubies and people who don't have the best health, we are more likely to need medical help out there. Hopefully you never need to use it, but, it's better to be safe than sorry.... so I'm told! 

• Informed your airline and feed company. If you don't tell the airline... you aint getting the extra bag simple as pie. And, if you don't tell your feed company people.... you are either going to have to take all the bottles and supplies yourself or..... you aint getting NOTHING! :)

• A travel kettle if your destination doesn't have a kettle for your sterile water.

• Last but not least, don't forget to take yourself..... that is usually quite helpful when going on holiday!! 

Travelling with a tube isn't all that hard once you've figured it out. 

I have also made a video to go along with this post going into a lil' more detail about travelling with a tube. So, I really hope that between the two of these things, it helps you feel a bit more at ease about your holidays. Check out the video by clicking right HERE :)

Any questions? Just ask... I don't bite.... OR do I?

Enjoy your Summer holidays from wherever you are or are travelling to in the world! 

Stay Strong 

& Travel Safe

<3

Rockin' Rollercoaster!!

Hello Hello Hello

It has been so long since I last was on here. There have been so many ups and downs and upside downs for that matter! There are a few reasons why I have taken a little break or not been able to be on here. That also means, lots to update you all with. This could be a long one, so grab a cuppa and a biscuit (or set up a feed if you're a tubie like me haha) and get comfy.

Let's go right back to the first reason I hadn't posted anything. I wrote a blog post and deleted it, then rewrote it and deleted it again. I then wrote a post that when I read it back, I realised that maybe it was too much. I'm honest and open with what I say, but sometimes there are things that are better kept quiet. As you may or may not have realised, I had got myself into a bad, low place both mentally and physically once again. It's normal to have high and lows in life and especially when living with a chronic illness and chronic pain. 

I just couldn't seem to write anything that wasn't full on that it could upset people or just ... Not be appropriate. Everytime I tried to write a post, I went blank or into depressing mode. I don't want to go fully into it as I still can't figure out how I would explain it properly. Let's just say, I had pretty much given up on life and was ready to visit another world. I was fed up of being ill, of being in pain and not being able to live a "normal" life. 

So much has happened since last time, a lot of it actually being positive for a change. I am in a way better place with so much going on that I'm trying to find time to breathe haha. 

Gastroparesis ..... Let's start with what's happened with all that. I've had two injections in my back straight into one of my nerves he believed is spasming and causing me pain. He did a 'Modified Celiac Plexus Block' - at least, I think that's what it was!! It's forms of anesthetic being put into the nerve under X-Ray. I might do a separate post purely all about the injection. The first one I had around a month ago and wait for it...... It actually did something! This rarely happens. It took away all the pain I get on a day to day basis basically and I was able to eat. I wasn't having 4 course meals mind you but I was able to est and not be in horrendous pain. I had some pain but it was totally barable and barely noticeable. It was great. I was able to eat and then stand up and move around.... Like what?!! This never happens. I was in heaven. I even started cheerleading. Not the pom poms and cheering..... The full on sport where you are doing flips and stunts and flying in the air. 

I have always wanted to do cheerleading since school but never did it. Something in my head flipped again and I decided.... Screw it..... It's my life, Gastroparesis can do one because I'm doing what I want for a change. So, I did.... I've joined a group and hopefully will make the team when they have the tryouts in a few weeks times. My first time there and they had me learning how to do back handsprings. It was soooo freaking amazing!!!!, I'm literally cheer (and bow) obsessed now :)

After a few weeks, the injection started wearing off... And pretty fast! So, we went back and my pain specialist did another injection. I know that there was no guarantee it would have the same affect again. There's always a chance it could do the same, better or not as good. However, it's one of the first and only things to work in a positive way. It was a sure thing to have it again. It's been a week now since the injection. It definitely hasn't worked in the same way as last time but it's definitely helped. I'm still having pain so not eating as much. Kinda sucks but will see how it goes as some days it works great and others not so good. It definalty is doing something though. Fingers crossed. 

I've also been away to Salou in Spain. it was a nice relaxing, lay by the pool kind of holiday. We went to Barcelona for a day, went to a theme park and got in the water with DOLPHINS!! One of my dreams from when I was like 10 maybe?! It was amazing. Such a fun holiday and I even got a really nice tan rather than turning Lobster and then back to white haha! 

I think another thing we need to start thinking about getting back to the health side is what is going to happen with my tube and medicines. It's clear that my medicines only seem to work when they going directly through the tube. If they're being taken by mouth it doesn't work and I just seem to end up going back down and getting unwell again. My pain specialist suggested a few options one being medicine being put up my ...... Haha getting the picture? I did reply by saying if he wants to come over and do it every day then it's a deal. I don't plan on sticking anything up there anytime soon thank you very much. 

Another suggestion he made was injecting my medicines. Now that would mean reviewing and changing my medicines and mixing things so it doesn't end up with like 50 injections a day. Another thing would be that, I don't like needles so not entirely sure how I was inject myself every day or every few days depending when it needs doing! I'm on my way to my specialist who deals with my pacer and all that jazz as we speak so that's a question we are going to ask him. We are also going to see how the battery is doing on the pacer and what the deal is with when it needs replacing as the NHS have stop funding the procedure and funny enough.... I don't have a spare £22,500 or whatever it is every few years. I'll keep you all updated after I've been and found out myself.

Oo I forgot to ask, have you seen my video on tube feeding and how to set it up yet?? If not, be sure to head over to www.youtube.com/thedramaqueensoph and let me know what you think? I've had a great response to it which is great and makes me feel so amazing knowing it helped people and show people what actually goes into it and stuff like that.

Right, I think that's covers everything in the shortest way I can so I don't bore you to tears or anything.

I've missed writing all my posts so, as they say, I'm back in the building!! Least that's what I think they say or I've just totally made an idiot of myself....again!!

Hope you are all well... Any plans for the summer??

Stay Strong

<3