Travelling with an Ostomy, round 2

I know I’m a little late, but here is what happened when I flew to Amsterdam a couple of weeks ago.

At our local airport, they have a metal detector and, more recently, a body scanner. This scanner is designed to detect anything that might be hidden under clothing, such as a weapon or other items. This included my ostomy. I can’t say I was surprised by this as it has been picked up before when we last flew. The security guard was polite and, after scanning under my hood with a handheld scanner, she asked if I had anything on my stomach. I explained I had an ostomy and, to my surprise, she smiled and took me to a side room, along with another female colleague. She said she didn’t need to see my bag but didn’t want to scan it in front of people and chose to do so in the side room as this gave me more privacy. It took less than five minutes and they were both very polite and kind about the whole thing. They wished me a safe journey and that was that.

I have read some of the horror stories other ostomates have shared about their experiences when going through airport security (one had been asked to open their bag, another had their bag ripped off their stomach without their permission, ect). Needless to say, I was a little nervous, despite our previous time flying having been without incident.

Thankfully, I was able to put my mine at ease before even arriving at the airport by visiting their website. My local airport has a “special assistance” section which included a helpful “tips” pdf. Reading through, I found that not only were they part of the green lanyard scheme (which helps staff identify passengers who have a hidden (or not so hidden) disability or illness), but they have also done a load of training with a list of charities, including Stomaware and Crohn’s & Colitis UK. This means that their security are aware of sensitive subjects like IBD or a stoma, and know how to proceed without invading someone privacy or dignity. All in all, I was quite impressed with how they handled things.

Now, I don’t know if any of you have had to squeeze into the on-board toilet, but from previous experience, I didn’t want to have to go anywhere near our planes facilities, especially with my bag; the cubicle is tiny and I know output can be smelly and I didn’t want to be the one to stink out the entire plane. Thus, I decided I wasn’t going to use it. But how was I going to ensure my bag didn’t fill up whilst in the air? Simple; I took extra loperamide throughout the day and before boarding. I also made sure to eat a small, carb-filled meal (we were flying around dinner time) and a bag of jelly sweets. Thankfully, this worked. I would like to point out that this only worked for me because my output is usually quite watery. If it were ostomy-normal consistency, then I probably wouldn’t have needed to do any of this as the flight was only about an hour.

Conclusion: flying with an ostomy is way easier than I thought.
I would recommend anyone who is planning on flying with a medical appliance seek advice from your airline provided/airport. It can’t hurt to let them know before boarding.
Although not always necessary, a travel certificate might help if you are taking a lot of supplies with you. And if you are taking medication, always keep it in the original packaging. One last thing, put your medical supplies in your hand luggage. You don’t want them getting damaged or lost whilst in the hold.

IBD & cardiology

For a while now I have been having palpitations on and off for no particular reason. I started checking my heart rate, using a built-in app on my phone, on a somewhat daily basis shortly after my IBD diagnosis back in 2016 and noticed my resting heart rate was always above what the app said was normal for someone of my age/height/weight/gender. I didn’t think much of it because I was on a lot of meds that, for all I knew, could be causing the increase in heart rate. It was always high whenever I was admitted to the hospital too but I assumed that was due to being in hospital as well as being unwell at the time.

Skip forward to just after my first surgery, and my resting heart rate was always above 120bpm. For reference, for an average adult of my height/weight/age/gender, the resting heart rate is typically between 60 & 80bpm. I figured the 120bpm was a direct result of my surgery and after a few weeks of slowly building my weight back up, my resting heart rate dropped to around 90bpm or so.

From there, I didn’t really notice it much; it became sort of like background noise. I’d notice my heart beating really fast during and after exercise but didn’t really think much of it then either because that’s meant to happen, right?

Anyway, after having surgery for the fourth time back in July last year, I started getting sudden onset palpitations with fast breathing and a somewhat panicked feeling (a panic attack?). Again, for no apparent reason. This would last for about 2 minutes before fading, leaving me feeling drained and anxious, so I finally went to my GP. She referred me to have a 24 hour monitor, which involves wearing a heart monitor (similar to an ECG) for 24 hours that records the wearers heart rate which is then analysed by a cardiologist.

After having the 24 hour test at the beginning of the year, I finally saw a cardiologist in clinic earlier this week. They did an ECG and an ultrasound on my heart and, thankfully, everything looks normal. My heart infrastructure is fine and looks healthy, and aside from the palpitations and high resting heart rate, there doesn’t appear to be anything wrong. They don’t want to try any intense treatment unless it starts interfering with my daily life but they did recommend trying beta-blockers to help regulate my heart rate. Because beta blockers can make you tired, the cardiologist said I wouldn’t have to take them all the time but could try taking them whenever I start getting palpitations.

My GP has already filled a prescription for me so I guess I’ll give them a go once they’re ready. Whether this is related to my IBD or not, I don’t know, but it wouldn’t be too much of a stretch to think so as IBD can effect many parts of the body, not just the bowel. I’ll update again on this after I’ve been taking the beta blockers for a bit.

In other news, I’m going to flying to the Netherlands later this week so expect a post about that later next week. I’ll be sure to take note of how going through security goes this time compared to last time (hopefully, it’ll go just as smoothly).

Why am I using my stick today when I didn’t need it yesterday?

I am travelling by train for the first time since my surgery. The journey involves several changes and I am carrying quite a full backpack. As I am still recovering, I need to be careful that I do not fall or get knocked into as these could both potentially cause muscle strain that can lead to other complications. Although I haven’t needed my walking stick for the last couple of weeks, having returned to work this week has shown me that I am far from fully recovered.

As my work requires me to be on my feet a lot, by mid-afternoon yesterday my stomach muscles were beginning to protest. I thought this ache would go away if I sat down and hugged my hot water bottle when I got home but, unfortunately, the pain persisted throughout the night and I am still quite sore even now.

What does all this have to do with my using my walking stick today? Well, as I am travelling through the busy London underground for part of my journey, it will not only help support me as I walk around, but it will also act as a “red flag” to other commuters that I won’t be able to move out of their way and to be mindful to not jostle me as they rush for the tube.

I have said this before but I think it’s worth repeating because not everyone understands that you can be fine one day and not the next. Recovery is not linear.

Travelling with a stoma

So, obviously we made it through security no problem. I was quite lucky to not be asked any questions about my bag or supplies at either end of our journey (I have heard several ostomates have had pat-downs as well as having to show their bags to the security guards when travelling). The guards at the UK end waved me through the scanner and that was that. When we landed, we didn’t even see the guards because everything is done with machines.

The flight itself, although a little turbulent to begin with, went pretty well. There was no blowing up of my bag, no excessive amount of gas and no having to use the tiny planes tiny toilet. Admittedly, our flight was only about an hour so I imagine I would have needed to use the bathroom on a longer flight.

As for the last couple of days, they have been great! Today (Sunday) is the third and last day of the LAN party and we are just waiting for dinner to arrive then we’ll be packing up in a few hours. It’s been an amazing three days of just games, YouTube and more games. I have met some amazing people too and am really looking forward to the next LAN.

Tomorrow is a chill day of not doing a lot but Tuesday we are visiting Amsterdam. I’ve never been so I’ll be taking a lot of photos. We have a rough idea of what we are doing whilst we are there so it should be a fun-filled day. We fly back to the UK on Wednesday evening.

Travelling with a stoma – update

I spoke to our airline last night about taking my ostomy supplies, specifically my adhesive removal spray, in my hand luggage and they guy I spoke to was so helpful; he said that it isn’t a problem so long as it’s within the 100ml liquid limit and I’ve got my travel certificate with me. This made me very happy. My spray bottle is only 50ml and Charter give a multi-language “travel certificate” with their welcome pack. The certificate is about credit card sized and has space to list yours and your GPs details, what you are carrying and why.

I highly recommend that if you are flying, call your airline to check what their policies are on certain medical supplys if you are not sure.

Travelling with a stoma… again

So, I’m going to be flying to Holland in just under two weeks. I haven’t flown since having my ostomy so I made sure to read plenty of articles about it. Pretty much all of them are positive, saying that it shouldn’t be any different from flying without an ostomy. One recommended that, once I get to security, I tell the officers that I have a bag just in case. Has anyone else travelled via plane with an ostomy? Did it cause any issues at security?

Another thing someone said they do is split their supplies/medication between their main and hand luggage so if one gets lost, they still have some of their medical supplies. The issue I have with this is that your main luggage is more at risk of getting misplaced than your hand luggage. When travelling, I tend to be quite careful to not leave anything behind or lose sight of my bag so I prefer to travel with all my supplies in my hand luggage. I do realise, however, that this doesn’t work for everyone, especially if you have a lot to take with you.

One more thing I wanted to share was that some airlines apparently offer extra hand luggage allowance for medical supplies which I think is worth checking out. I’ll let you all know how that goes.

Travelling with a stoma, part 2

So I went to Lincoln (which is about 200 miles-ish north from where I live) to visit family over the weekend. We travelled by car, which is usually a 4-5 hour journey. It was the first time I’ve travelled in a car for any real length of time since getting baggie so I had some concerns about having to make extra stops as well as the position of the seat belt. As it turned out, we didn’t have to make extra stops because my stoma was thankfully very inactive for most of the journey. Also, because it’s getting pretty cold now, I had a thick coat on which kept the seat belt away from my stomach.

As for supplies, I did my usual and packed more than I needed, just in case. We were only there for three nights, which meant two changed for me, but I still brought an extra bag in case something happened.

I didn’t run into any issues with baggie over the weekend aside from the cold causing my muscles to ache a little. Other than that, I had a great weekend.

And I’m home.

I made it home in one piece! The London Comic Con was amazing and, even though I’m so very tired from all that walking, it was worth it. I cosplayed as Misty from Pokemon for the first two day but chose to just wear civvies for the last day. This was mostly because I only had two yellow tops instead of three (and it was very warm all weekend) but also because I found that, although having my ostomy bag tucked into my waistband wasn’t uncomfortable, it was very hot under the bag so it did sometimes make me think it was full and/or leaking at times. So, for the last day, I just wore it untucked and with a cover on which was a bit cooler.

I got quite a few things from the sellers halls; everyone seemed to be doing lucky bags so I got one from Tofu Cute which had a load of Japanese sweets and drinks in it as well as a couple of plushies. I also got a print from one of the artists in the Comic Village, and my sister bought me a pair of handmade Studio Ghibli hair bows. I have every intention of going again next year but we’ll have to see how I am health-wise.