Travelling, Delays and Cancellations With Crohn’s Disease And An Ileostomy

Hey Crohnies and Lucky Coiners,

I hope you’re all doing well, I’m currently lying in bed absolutely exhausted from travel mishaps and jet lag.

I know this isn’t exactly relevant to a clothing blog however I feel it’s important to document what’s happened to myself and Stuart over the last few days while travelling home from Florida.

As possibly some of you have saw, I was interviewed about our experiences in Orlando during the Christina Grimmie shooting and also the Pulse Nightclub mass shooting for the Clydebank Post which you can read Here. At the moment I do not feel like I should be posting pictures of being happy in and around the Orlando area in Disney and Universal due to there being so many families in mourning over such horrible events so I will blog more about my holiday in the coming days/weeks when it isn’t so fresh in our minds and there has been a time of mourning for those victims.

I do however feel it is appropriate to raise awareness about how unprepared I felt British Airways was to deal with having a passenger with additional needs such as mine, especially when those needs aren’t visible when I’m wearing clothes. Firstly I would like to point out that no public bathrooms (especially airports) are suitable for someone changing an ileostomy appliance due to there being no single place to put any of the equipment needed to change the bag. I know I have a lot on my plate at the moment but I am determined to try and get all disabled bathrooms or even normal cubicals in public areas to have a small shelf in which people can place not only stoma bags, wipes, flange extenders etc but also those who may need to change sanitary towels or tampons or even be a place for people with diabetes etc to inject their medication too because I for one am still worried I may have an infection around my stoma due to having to change my bag so often in unsanitary conditions because I had to try and place all my equipment on top of toilet paper holders, hanging out my back pack and even placed on my thighs just so I didn’t drop things and have the risk of infection even greater because the skin around my stoma is still an open wound and infection can very easily set in and in extreme circumstances lead to sepsis.

This may be something minor to most people who can multi task or don’t have these additional needs but since there are so many different parts to the ileostomy it has left me exasperated, in pain and so stressed out that I have been more emotional than anyone should be when they go to the bathroom. It is a very easy solution to a problem that in this day and age seems crazy when we are so aware of equality because I for one do not feel equal when I go into a disabled bathroom and find nowhere to put any of the things that I need for this disability.

So okay the toilets are bad enough but it’s something I’ve dealt with for a long time now and I know it’ll take time before any changes come in place there, however, we didn’t have a great experience with British Airways that is probably easier to solve if there are staff who are compassionate to those in situations like ours and have a means of dealing with that.

Basically we had a stop over in gatwick airport on our way home from Orlando of 3 hours, this is something we planned for and knew what to expect however when we arrived at Orlando airport (4 hours early for our flight to be safe) we were left waiting in a queue for half an hour before we got “checked in” this again was expected so I sat on my case and expected to be through the process fairly quickly after that and be on our way to security and lunch but there of course was a problem. The man checking us in just told us he couldn’t find any of the Scottish passengers bookings on the system and therefore we had to wait in a separate line to deal with the problem. This in itself didn’t seem minor to begin with but took a further 1 hour 30 minutes to get us seen even though there was only 1 family ahead of us. Due to having to sit on my case/stand for so long my bag was definitely acting up and another passenger told me that there wasn’t a toilet nearby and it took her 15 minutes to get there and back to the queue so there was no way I could go on my own when we still had cases and I am very nervous in new places without Stuart there in case I do end up with a leak that causes a mess or even to just hold my bags because I can’t do that much since I get so tired so quickly in comparison to completely able bodied people.

Once we reached the front of the desk I felt it was very important and also embarrassing that I had to make the manager at the desk aware of my Crohns/ileostomy as I had an extremely full bag and also didn’t know when we would be able to leave for a bathroom. The staff here offered no help in the situation and we’re only interested in the situation that had occurred being basically that our flight from gatwick to Glasgow had been cancelled so we weren’t offered any options other than they would be sending us by bus to Heathrow airport where after an extra 2 hour delay on top of our 3 hour stop over we would be getting a flight home.

This led to immediate panic as I had used to many ileostomy bags throughout the holiday I was running low and I was desperate to get home and be able to get to my new delivery of supplies. I asked then if possible I could have a seat near the bathroom and was told we would however it never actually materialised.

This was by far the most stressful thing to happen on the holiday because due to the delay it would mean we were travelling for over 25 hours. I’ve never before felt quite so isolated with my illness but Myself and Stuart both thought it was completely disregarded since I wasn’t in a wheelchair and I am not physically any different to anyone else when I’m wearing my leggings and a top.

Long story short we ended up getting our first flight to gatwick and were sent to the British airways desk after we had to collect our luggage (this was not going to happen if we went from gatwick as planned so on top of feeling tired, in pain and stressed I also had to try and wheel my suitcase along with me). The lady at the desk again was informed of my condition and didn’t even acknowledge it, she just gave us vouchers for a national express bus and a £10 food voucher (thus kind of felt like a slap in the face at this point) I asked if we could even have access to the lounge in Heathrow just to be near a toilet and be able to sit down in peace and quiet because by this point I am close to tears from exhaustion and the pain caused from my bag leaking while we were at the airport in Orlando in the queue and the leak burning my skin so badly but was told simply that wasn’t possible. I really wouldn’t care where we would have went so long as we could have had somewhere close to a bathroom to sit but not once were we offered that and even the bus to Heathrow had a toilet which was locked so I spent the journey trying to avoid it overflowing and even had to contemplate emptying my ileostomy bag into a carrier bag while we were travelling which is humiliating!

Due to all of this as you can imagine I didn’t get a chance to be relaxed enough to sleep so I had been awake for over a day by this point and was travelling not for about 20 hours by the time we arrived at Heathrow. We then had to sit around for over 2 hours before we could even check in. I have no way in my mind to justify them having us sit on hard chairs with no toilets near the chairs in terminal 5 of Heathrow may I add when they have lounges available. I don’t want into the lounge to take advantage of the system or get free food/drink but literally being able to be near a bathroom to wash up and take my time without there being queue of tutting ladies needing to go to the bathroom waiting on me finishing up and have somewhere slightly more comfortable and quiet to sit and just collect myself would have made the journey go from unbearable to even potentially pleasant.

Finally we ended up getting checked in and had to wait another 2 and a half hours at the gate and by this time I was like a zombie before our flight home and finally getting to sit down and relax. I have to say the whole experience has made my very wary of travelling again for a long while as it has left my skin raw and cut, I’m still exhausted and scared that my skin is once again infected (I’m off to see my GP about this today so hopefully I’ll be just on another course of antibiotics and I’ll feel a bit better).

I know this seems long winded and also very ranting but I feel it’s so important that big companies take into account individual circumstances, especially when you’ve paid thousands of pounds for a holiday. I just wish more than anything at the moment that I didn’t have my stoma as it was a serious problem while we were away however I am completely aware that this ileostomy saved my life so I can’t take for granted how lucky I am to be in the position to be able to write a long winded and ranting post, especially when many others don’t get the chance.

I promise I’ll post a more upbeat blog soon. Thank you for reading this and remember you can’t judge a book by its cover even if it is in a fashionable one cos inside its pages can be torn. (I think I just tried to use a metaphor that may not have worked but it’s staying since it sounds profound haha!)

Jen x

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