It is no secret that since July last year I have done a LOT of travelling. Mainly to see my lovely man Steve who lives in Birmingham but also for stoma-related events and work. Most of my travelling involves going on the train because I cannot drive but I remember for years I used to worry about having a leak and emptying my stomas using the train toilet. This held me back from travelling for a very long time but since the Purple Wings ball last July I have been gently pushed into travelling more.
It can be really nerve-wracking travelling by train for the first time after ostomy surgery. When I looked for specific articles about this I couldn’t find much, so I thought I would share 10 tips to make travelling by train with an ostomy a little bit easier.
- Try and pack all luggage in one suitcase
I have learnt this one the hard way. I do not travel light and I know Steve, Stephie and my mum will read this post and all nod their heads in agreement. I know this has been a source of utter frustration for them but I am slowly learning.
When I started travelling again at first I struggled to pack light. I used to travel with my suitcase, laptop bag, shoulder bag and my handbag. This was too much and I found it was hard putting my bags in the overhead shelf (I shouldn’t really be lifting heavy items because of my prolapse). Sometimes I would ask a passenger to help me but most of the time I would put my suitcase in the compartment by the door and the rest of my luggage would be crammed on my lap.
I realised that I couldn’t maintain this level of travelling with so much luggage and using a crutch for too long. I knew that eventually, this would impact my health, so I decided to invest in a 4 wheel suitcase that is easy to push with little exertion. I now try to fit my laptop into my suitcase and I am learning to travel lighter. This is still a work in progress but putting everything in 1 suitcase makes travelling easier.
- Request assistance if needed
It took me a really long time to give in and finally ask for assistance. I felt like I would be judged because I looked well and this fear held me back from asking for this service.
Admittedly, I do not use this every time but when I have it has been extremely helpful. Especially if I have a lot of luggage, just come out of the hospital or struggling with my pain from my prolapse.
You can either call the train station beforehand and request this or ask on the day. I have actually done this on the day and both Bournemouth station and Birmingham New Street were extremely helpful and they found a member of staff to help me. Not once was I judged for accessing this help and I realised this was my fear that ultimately stopped me from getting help sooner. Lifting my suitcase on and off the train can be difficult at times and they will help with this. They will also call through to your destination or station change and make sure another member of staff will help you and your luggage exiting the train. This service is fantastic and they have helped me a lot.
- Apply for a Disabled Persons Railcard
The Disabled Persons Railcard is for people with a disability that makes travelling by train difficult. You qualify if you:
- Receive Personal Independence Payment (PIP)
- Receive Disability Living Allowance (DLA) at either the higher or lower rate for mobility or the higher or middle rate for the care component
- Have a visual impairment
- Have a Hearing impairment
- Have epilepsy
- Receive Attendance Allowances or Severe Disablement Allowance
- Receive War Pensions Mobility Supplement
- Buy or lease a vehicle through the Mobility scheme
Here is the link to apply for the railcard. If you do not meet any of the requirements above but have a stoma then you could ask your GP to write a letter and see if they will accept this. This card is £20 for a year but definitely worth it because you get a 1/3rd off every train fair. It has helped me save some money (when I remember to take it with me)
- If you have time, try and empty your stoma before going on the train
Sometimes this can be difficult and I don’t always have time to do this but I find going to empty before I get on the train is so much easier than using the toilet on the train. There seems to be more room, smells better and less stressful. However, sometimes I do not have time to do this and have to use the toilets on the train.
- If you need to empty whilst on the train don’t wait until it is full
This is a tricky one because sometimes when I am on the train by the window and I have somebody sitting next to me and lots of passengers standing around I don’t feel like going to the toilet. However, having a leak is more problematic so I have learnt the hard way now I don't wait till my bags are nearly full to empty them.
Using train toilets are not the nicest but this will only take a few minutes and then you can be all comfy in your seat again. I have had to change my urostomy before in the toilet due to a leak because I let it get too full. Changing stomas on a train can be a bit bumpy and it is better to empty before it gets to this point and you have a leak. The trains should have accessible toilets on them that are bigger which may be better to use if you need to change your pouch.
- Make sure your emergency kit with your supplies are near you in case you need it.
It is important to have your emergency supply kit in an easy to reach place in case you need to change your pouches. This can be your handbag or on the top of your suitcase so this can be accessed easily if needed.
- Take water and food with you
I try to take water with me on every train journey because sometimes when I haven’t and waited for the food trolley it hasn’t turned up and then I become very thirsty. Being dehydrated with a stoma can be problematic especially if you have no water and the train gets stuck or delayed on the track. If you can take food with you then this will help if you get hungry during your journey or the trolley doesn’t arrive.
- Base plate extenders may help you feel more secure while you are travelling
I use these all the time because they help me feel more secure especially when I am travelling. If a leak has started then this will help hold it in until I can change my pouch. There are many products out there but I personally use the Brava base plate extenders.
- If you are on a long journey try and move your legs
Sometimes if you are sitting down for long periods of time your legs may get a bit stiff. It is important to try and keep moving your legs slightly to keep the blood circulating.
- Don’t struggle and ask for help.
This is probably the most important tip. If you are struggling to ask for help, whether this is asking other passengers to help with your luggage or asking staff for help. Sometimes it is hard asking for help but I realise that if I don’t then I could do myself more damage which may lead to me ending up in the hospital because I overdid it.
I hope you find these tips helpful and I would love to hear from you if you are worried about travelling for the first time since stoma surgery or if you have some tips that I have not included!
I also wrote a post about 'Flying with an Ostomy' which you may find helpful.