Sore stoma

Hi Em

Found the inhaler cure very interesting and pleased that your husband has it now added to his regular supplies.

For many years (most of my adult life) I have suffered from shortness of breath and have been constantly resisted getting one after been asked by various doctors. Last month I bit the bullet and asked my GP for one and it helped so I asked for it to be added to my repeat prescriptions and was taken a back when I was told let's give a bit longer before I added it. 

Feel as if when they want to prescribe it it is okay but when you ask it becomes a different story.

My GP is usually very good.

Ian

I also found the inhaler solution very interesting and surprising.

I write for Brenda who is my wife and has a colostomy. She is disabled and not able to manage the stoma so I have managed it since it was installed 18 months ago. I am her career in all things. She has looked after me for the past 50 years, now it's my turn. We have had all sort of problems with 'it' including explosions, sores and loss of sanity, but I get great comfort knowing that there are people having the same experiences and they give advice and great practical tips....thank you all..   This year we are going on a cruise with 'it' for our Golden Ani and hope we will all get on OK. Any tips from anyone, I need wheelchair, lots of medication, insulin, and everything that (it) needs.  What do I do about disposal of waste.?

We went to a hotel in Llandudno last year and they charged me for each bag I put for disposal !!!!

I too am taking Little Miss on a cruise in april.... We are going with P&O and I have had lengthy talks with them regarding this.....

On P&O you can request yellow waste bags for the room....

When I went to Turkey and Lanzarote recently I purchased some "smelly bags" from ebay - I think these are intended to keep ahem strong smelling plant type smokey things in - they are totally odourless _ I know - I swear by them now for overseas travel (especially aircraft they are great for that) here's a link to what I buy... http://www.ebay.co.uk/itm/Black-Smelly-Proof-Bags-Air-Tight-Grip-Seal-Multi-Buy-Deals-Various-Sizes-/121761375121?var=&hash=item1c598b2391:m:m2v3bSeSDPvMFOcZT7tPttA

What I also did was take the old trusty roll of clingfilm...pop the used bag into two black baggies (the type we get with our supplies then wrap the cling film around - no smells at all.... then (because little miss was active with all that food - ok wine.... it was the wine...) I used to pop my little cling filmed packages into the BIG smelly proof bag (it fits about 5 in) pop on the balacony and then under the cover of darkness we would pop to the bin and and dispose of...

Cruise ships are used to stomas.... try the cling film trick at home.....it really does work and then just pop in the bin...

another tip I found was to pop the black baggies (this is what i do at home if caught short) into a pink nappy sack....any cleaner will just assume its a nappy......

I know you are going on a cruise but if you ever go airline I went twice with Thomson airlines and they give you an additional hand baggage allowance for medical equipment - I took a gorgeous Cath Kidston Holdall ( yes Ian its another handbag!!) with all my supplies in at no extra cost... I think most airlines also do this....

Hi all

So were back onto handbags again or at least bags for disposing our rubbish.

I would ask your supplier if they have another type of disposal bag that can give you, one if my suppliers provides me with the usual disposal bags plus dark grey/black heavy guage polythene bags which have a self adhesive strip for sealing. When I am away from home I use these and place in litter bins found at the roadside. These bags would also be suitable I would think would be useful on a cruise and if the cruise operator will supply you with yellow bags so much the better.

There should be no need for any hotel to charge you for disposing of your waste, what was the reason for the charge - profit or health and safety. Pity we are not permitted to name and shame. If it been me I would have asked for a receipt for every bag, this would probably be more that the charge and they would still have to pay the local authority to collect it.

When ever I travel by air I obtain a list from my GP showing all my current medication and ostomy supplies and a letter signed  by the GP stating that I need to carry an extra. bag.

For all travelling abroad if you have a smart or I phone check out the app store for stomawise travel certificate when loaded you will have details of your ostomy and your needs at security in English and all popular tourist destinations.

I know we have deviated from the main subject of Sore Stoma by Lisa but holidays can be a worrying time for us and all information and personal experiences can be a benefit for all whether you travel by land sea or air.

Ian

Hi Ian

thank you for the info about the stoma certificate/app.

We don't have a smartphone (yes I am a refugee from the Natural History Museum), but I will look online and see if I can get one to print off. It seems a great idea, one of my (many) worries when we go anywhere is that we may need to explain things, and Jeff would hate that.

I will post my findings as there may be other dinosaurs with similar needs.

xx

Niobe

PS I just got a new handbag, black and cream, very smart!

Hello, acting on behalf of Brenda157 

I am also acting on behalf of, and think that our situations are very similar - only myself and my partner have only been together 6 years and out of that have had about 3 good years before ill health started to change him.

He,sadly, has 2 types of dementia as well as a recent ileostomy, which he fails to manage.

The ileostomy came about very suddenly, only 4 months ago, and a holiday seems like a distant dream at the moment.

However, I wish you well, and I hope you manage the cruise and have a wonderful time

Good Luck

Hi HiHo

Apologies but I have the urge to say after my salutation, Silver away must be watching too much daytime television!

Anyhow, having a holiday doesnt have to be a distant dream just a lttle bit of extra planning and preparation.

Travelling by CAR No problem [You have restrictions on what you carry BUT if have a ferry crossing make sure you take your emergency change bag with you when you leave the car, disposable bags make good sick bags]

Travellinbg by COACH No problem just have the emergency bag handy including the air freshner.

Travelling by TRAIN No problem just have the emergency chaange bag handy and get seat near the toilet if YOU WANT  can arrange them.

Travelling by AIR Bit more of a problem but easily ovecome  by

getting a doctors letter explaining that because of MEDICAL CONDITION you need to carry items which you may need on the flight.

THIS will enable you have an piece of hand bagage BUT you must inform the airline.

PACKING supplies in your hold bags spread them around the bags including your travelling companions [just in case one of the bags decides to go to a different holiday location].

TAKE more supplies than you will need, especially pouches, DONT assume you will be able to get your brand of pouches  overseas. CHANGE of diet could mean you using more pouches.

HAVING an ileostomy should not stop you having holiday fun including swimming, dancing and outdoor and indoor actvities.

TELL your hotel on arrival that you have a colostomy bag they may want you dispose of them in special bags [HEARD a story about a hotel somewhere that wanted to charge extra for each contaminated yellow bag, if you have a problem just dispose of them in roadside refuge bins]

Travelling by SEA NO PROBLEM except if you have air travel included then see above about the piece of hand luggage.

On BOARD then all systems go and enjoy the cruise, again just watch the food and the quantity. ask for a yellow bag for disposing of your waste bag.

Holidays need not be a distant dream, with planning and preparation they become reality, seize the moment.

IAN

POINTS TO NOTE

AIR TRAVEL

DO NOT take your scissors in your hand luggage.{I have a lovely pair in the bin at Stansted}

OBTAIN a travel certificate [available from all supply ccompanies] with a translated copy stating that you have a colostomy bag and should be necesary to o fingr tip search this should be conducted in privacy

ALL TRAVEL 

CARRY medicines for diarrhoea and constipation.

DRINK lots of fluids but be careful with the drinks containing alcohol

I CAN TELL YOU WHERE TO OBTAIN A WONDERFUL TRAVEL PACK THAT IS FULL OF USEFUL INFORMATION.

FRIENDS REQUEST SENT 

Hi Ian,

Could you please send me details of how to get the travel pack you mentioned earlier this year!  I'm due to go on a cruise in January and I'm getting very stressed about it as I've only just been discharged from hospital having had an emergency ileostomy.

Love the chats, I find it really helpful reading other people's experience with  Vesuvius, Mount Etna or Krakatoa, so apt!

As your bilingual I'll sign off with ...

Diolch yn fawr.

Avril 

Hi Avril 

If you let me know what information you are looking for I will try and help but in the main you need to ensure that you take with you ample pouch supplies etc as the medics may not have pouches on aboard.

On board the cleaning staff will leave you yellow rubbish bags to put your disposal bags in.

The travel information I compiled gave information on where to get things like keys and urgent toilet cards but what you need is translations of the wording in various languages stating that you need to use toilet facilities when you go ashore.

Your stoma care nurse and supply company will be able to help.

You will need medication to combat diarrhoea etc.

Remember to store your pouches in a cool environment on board.

Many people with stoma do go on cruises without any problem but if it involves and flying make sure your scissors are in checked luggage.

Just keeping asking questions and I will try and answer but I am sure the other members who have been cruising will soon be on telling you of their experiences.

Regards 

Ian

Hi Ian,

Sorry late reply, had a bad week! Really appreciated all the information re travelling, helped calm some of my fears. 

Now I'm having a problem sorting out travel insurance due to Ileostomy emergency surgery and pre-existing medical conditions (which they've covered previously)! Don't get me wrong I can get it but at an extortionate price. Has anyone else had this problem?  Has anyone any advise on travel insurance company's who are a bit more realistic, I could go on 3 holidays for the price of a single trip cover!!! Thanks 

Avril