Cruising with Tomas the stoma

 

I have just come back from an amazing cruise with my husband ( and Tomas). I know you may be thinking ‘ And?”, well what I really want to say is what went well with a stoma and what didn’t, so that others will know what to expect. I suppose I am writing a bit of a travel blog with some stoma bits in between, and yes it was amazing and wonderful so I apologise now if you are jealous in any way. 😉

Customs wasn’t an issue at all, we flew from Gatwick this time and they didn’t have the booths to walk into, so I didn’t bleep going through the ordinary checks, in fact my husband did, so he needed the frisking and I didn’t have to say anything to them going through.

I was so brave I didn’t keep my sprays and adhesive remover on me at all, just in the main case in the hold, I felt confident with my stoma bag .I know, it’s madness. My fellow ostomates will understand why this was  Russian roulette. It was fine though so all good 🙂 usually I will have a clear bag with a few essentials in and that is usually enough. Not sure why one would need an extra clear bag except if you take your makeup etc in your hand luggage too. I just put that in the main case.

The ship was amazing, it was a Thompson  (TUI ) and the cruise was called ” Highlights of the mediterranean”. We were late booking so didn’t get the outside cabin with windows but we were more than impressed with it all the same. You still have to go through their own customs and check in and out off the ship. We were due to dock at Corsica, Italy ( Rome) then Florence or Pisa, then St Raphael ( for Monaco/ St Tropez), Barcelona and back to Palma.

The food and drink didn’t cause an issue with Tomas either but I was careful what I picked to eat, there was such a variety it would be impossible not to find anything suitable. I do sometimes get random watery output but never really find the cause, and it seems to right itself, this happened once on the ship and I just had to make more regular trips to the toilet. ( Info on the toilet facilities to come)

My only issue which was annoying is that I liked to wear a dress in the evening which are body hugging up to a point, so I tried my support band. It helps to hide the fact that I have a stoma but I worry that it squashes it all too much. I was right to worry, When we went back to the cabin afterwards and I undressed, I had pancaked and my base plate had lifted up causing a leak. As luck would have it, it didn’t go through to my band or my clothes, it just meant a nuisance bag change late at night. This is one aspect of a stoma that irritates me and makes we want to be ” normal” again. The fact that I have to check my clothes at all angles before I feel confident to go out the door, and I don’t really have anything that keeps me in place but isn’t too tight, is another.  I do use an intimate wrap under my dresses which helps a bit, but it isn’t deep enough to cover the whole bag, so I either stick out slightly at the top or the bottom bit where I empty digs into the top of my leg.

Ok, the toilets…… they are like aeroplane and train toilets, and by that I mean that anything on the front of the bowl doesn’t flush away properly if at all, so it took a while to sort out each time to leave everything tidy for the next person.  Not so good in the shared toilets on deck. The actual public toilet rooms in the ship, and in Italy Spain and France were good in all other respects, far better and cleaner than any we have here in England. The disabled toilets are all amazing even the one at the airport in Palma, I think we have to up our game here, ours are invariably disgusting and need inspecting before we dare sit on them. It is best to make sure some loo roll is stuck to the front to empty onto first but even then it doesn’t always flush there at all, but at least you could move it down a bit lol ( sorry too much information for some).

Usually on a beach I am happy to have Tomas’s cover out on show but on the ship sunbathing I didn’t feel as comfortable, there was no reason for this, but my thoughts were that these folks will see me all the time I am on here, but on the beaches they don’t know me and probably won’t see me again, not sure why I felt I might be judged, it’s just how I felt. One day it was quite empty when we got back from shore so we had nearly a whole deck to ourselves to use the sun lounges, so I braved it then and it felt good. Only a handful of people went by and if they did glance I didn’t notice. Normally I am very open about it all but I just felt slightly more vulnerable on there.

I did a bit of a pose when no one was around 🙂

Finding toilets on land could be difficult unless you were happy to buy a coffee or two, although after the fact I did see some public ones about. One cafe in Florence had an agreement to let cruise ship customers use their toilets if they had their cruise sticker on, which was good except I think they had an agreement with all cruise liners because the queue trailed outside the shop.

Back on the ship…

The staff on board couldn’t do enough for you and were very polite and treated you like kings and queens, it was lovely. They tidied the cabins 3 times a day, the end of the day they put chocolates on the pillows and turned down the beds. The towel art was amazing too.

I worry every time I go to bed in a hotel/ friends/holiday though. I don’t leak very often but you never know. I would be mortified, never say never.

There were many bars and restaurants, all excellent, with the all inclusive drinks being good brand names.( at least you know what you are getting then) You could pay for a premium package but there is no point really. Anything extra that you wanted either from the onboard shops or excursions etc had to be paid onto your Thompson card at reception first, or you could leave your bank card details prior to setting sail. We just topped up our card at reception if we wanted to spend anything extra.

It was great to wake up to a new place every day, and for those worried about sea sickness, it was fine most of the time. One day it was slightly swaying when you stood up and it took me a little while to get used to it, it made me feel slightly off. I was told this was a rare occurrence. Even though it carried on through the night, it didn’t bother me after that and it only happened once that badly. Don’t let it put you off if you are thinking of a cruise, it was a small part of a large great time.

FLORENCE

Beautiful buildings and churches.

ROME- BASILICA AND THE ENTRY TO SISTINE CHAPEL ( you can’t take photos actually inside the chapel, and you have to have your shoulders covered in both places of worship). This was my favourite bit and I was really looking forward to it, I was not disappointed.

All I can say is, don’t let travelling with a stoma stop you, yes there are challenges but they can be overcome, and to stop going places just to feel safe and cocooned means you are not getting the best from your one life. There are some considerations, but you know your own stoma and body so just take the time beforehand to get things organised and make sure you take everything you need. I can guarantee if you are not sure whether to take an item or not, take it because you’ll wish you had.

 

 

 

Talking toilets…an inconvenience

Toilets are a necessity for everyone, but if they are dirty, in disrepair or just downright odd this is a nightmare too, especially for someone with a stoma or a bowel condition like Crohns disease or ulcerative colitis . We spend a fair bit of time in them so it is very important.

Take the one in the photo for example. Look closely and you can see a very odd toilet layout. In the reflection of the tiles you can see the bowl right ? now look where the loo roll is……. yep 5ft above your head. What the hell is that about? This was in a Wetherspoons in Camden. I wouldn’t mind but the loo roll dispenser has to be the most annoying one ever too. I have seen some strange or filthy toilets in my time but never one where the loo roll was so out of reach. I was so bewildered by this, that I decided to tweet Wetherspoons about it. They replied and said that a lot of toilets were set up like this, I disagree I have been to a few and none of them were set up like this. If there are others, I feel it means they have  a complete lack of interest in their customers and they should be embarrassed.

I have decided to check out some others, and name and shame or congratulate the owners. In fact if anyone would like to join in and send me any pics of toilets good and bad, I might do a poll or toilet wall, and send the owners a “Tomas trophy” for best and worst.

I know that people can use them and cause a mess.

But on the other hand staff should check them regularly for their customers. This loo was ok but the floor was dreadful, you don’t want your trouser leg in that when you pull your bottoms down.

What about the wonky loo seat? Not nice for most folk, but for us ostomates who sit right back on the seat to empty our bags its awful.

And if anyone has pee’d on it……..

You might say that we could be the dirty ones because we empty our poo into the loo regularly, but let me assure you that most of us are super careful and super aware of what we are doing and where it will go, and because we clean the bags etc we clean where we have been as well. The last thing we want is for someone to use the loo after us, and know what we have been doing. In particular, if we are at a friends and need to use the loo, their is  no way in the world that I want to leave any evidence that I have a bag ( even if they know)

I prefer the disabled toilets, yes I am allowed to use them and yes, if anyone dares question me I will tell them why I am allowed to use them, and possibly I might even show them. These seem to be cleaner because they are not used as often I suppose, and they are bigger for us to sort ourselves out properly, although most of these don’t have a decent shelf to put essentials on, so if anyone is reading this who has toilets, be a dear and stick a shelf up.

How about this in Japan?

Toilets for Ostomates

 Necessity of Toilets for Ostomates

Many Japanese ostomates are hesitant to leave home and have active lives in the community because they worry about how they will empty their pouches or handle leakage problems should they occur away from home. It is particularly stressful and instills panic to deal with leakage of stool or urine while in public. In a JOA survey, 50% of ostomates reported these helpless feelings.
Therefore, it can be said that the availability of public toilet facilities to meet ostomates’ needs is the key to their sense of well-being and rehabilitation in the community.

(Can you  imagine our government going this far? This is fantastic to see, I just happened to come across it when googling.) There is more…

a) Toilet
b) Small-sized sink with a warm water nozzle (for discarding stool in the pouch and washing in an upright position)
c) Wash stand
d) Medium-sized sink with a mirror and a hand held warm water shower (for washing or changing the wafer, and for rinsing and cleaning the peristomal skin)
e) Large and deep sink (for washing soiled clothes, etc.)

4) Preparation of the Environment
– Clear instructions on how to use each facility and its equipment
– Control of access to the toilet room. Easy access and use by ostomates is the basic premise, but safeguards against use by unauthorized persons are also important, especially at transportation   terminals.
– Signage indicating the availability of ostomate facilities should be clearly visible at the entrance   of each toilet room.

The installation and practical use of toilets for ostomates in Japan is just beginning, and we are in the process of trial and error to establish an optimum facility. To attain this goal, ostomates must be responsible for cooperating with the related authorities, owner organizations, and facility developers on all stages from planning to use and improvement.

It is expected that with increased availability of toilets for ostomates throughout the country, the rehabilitation of ostomates into the community will be accelerated, providing a better Quality of Life for Japanese ostomates.
It is also hoped that through this initiative, public awareness of ostomates’ problems will be enhanced.

 

This just blew me away……..

3) The ease of using the facilities and equipment must be examined in view of the flow of an ostomate’s body movements and various changes of posture required from the start to the end of caring for his problem (such as changing the entire pouching system, standing, sitting, etc).

Click here to read the full article

How amazing if this were to happen in our lifetime, no one with any disability would have to worry about going out incase of problems ever again. The other amazing thing is that they have rolled this out over many parts of Japan but we don’t even have one on colorectal wards let alone anywhere else.