WhatsApp appointment with SCN

Hi Mark

Who would thought that we would see the day when we'd be pointing cameras at our anatomy and sending pictures to others but needs must and if all is well stomawise that's a plus. Depending how you measure your stoma to get your stoma size you may see some bleeding coming from the base this is nothing to worry about and it soon "heals" but if you are able to mop up all blood this will help the wafer attach to your skin, I usually find just sitting for a while without anything on my stoma and letting the air get to it and dry it out, helps.

If you were left with your rectal stump in place this could be the cause of the stabbing and throbbing pain which can be aggravated with sitting down too long or lying on your back in bed and can be at times be very uncomfortable.

Morphine can cause constipation if you experience this you should mention it to your GP as he can give you (even more) drugs to combat it.

Morphine is also called Morphgesic®; MST Continus®; MXL

and comes inTablets slow-release tablets and capsules, 

Tablets are preferable as slow release tablets and capsules sometimes don't have time to be fully absorbed before they exit your body through your pouch, it can be quite a shock seeing tablets and capsules in your poo and you don't really know if they will helping you or not.

It also comes as liquid medication, sachets and injection.

If you observe them mention to your GP, they don't know much about this and your have to explain.

Leaving the house for the first time can be a worry but if you prepare everything should be okay.

Nice fresh pouch emptied before you leave home, a toilet visit as soon as your arrive at hospital, your emergency change bag with everything you need for an unscheduled change of pouch plus underwear with, toilet visit before leaving the hospital should see you okay.

You'll probably find that the hospital and waiting rooms will be very quiet and observing your safe distance shouldn't present a problem. I'm sure your oncologist will have some good news for you.

Being able to pick up on some of the things you enjoyed pre stoma is helpful in rebuilding your life, getting the bag in the right position may need and bit of a trial and error to find the best position or even a small cushion will soon bring back sounds of the strings strumming and get your bag swinging quite happily.

Glad your progress is making headways you know that the only way to go is upwards and onwards from now on.

As always just shout if you need help on anything.

Ian

CC

Why not head over to Boris Break our daily Tit-Bit and join in out daily chat and moan and keep in touch with your fellow members you can find us in the Bowel (colon and rectal) cancer forum group. A new thread starts daily and one of the highlights is the new quiz set every two or three days, it's just our little bit of fun to get us through the lockin.

Ian

Hi Ian

I hope today finds you fit & well  and that you're enjoying this glorious weather

Thanks for your reply, you picked up on lots of things that hadn't even crossed my mind - even the obvious like taking a spare pouch/accessories out with me in my emergency change bag.

Good to know I might experience a little bleeding when I make my new template. My stoma nurse mentioned it too. She also said that it wouldn't matter that much to leave it until she saw me at my oncology appointment, but I'm gonna try and 'get in there' and do it myself if I can.

My rectal stump hasn't had any work done on it at all yet.  It's usually at its worse around the same time as when I would usually have a poo.  I've managed to pass a little through my old bum but it's been mostly dark black blood from the cancer (SCN said this is perfectly normal and to be expected). 

I'm already on oramorph, trying to take it only twice a day if possible. The slow release morphine should make me more comfortable - Hopefully!  Will look out for signs of constipation - I have plentof movicol in standby  I Didn't realisethat certain meds may pass straight through. That's good to know as also on meds for HIV. (Diagnosed 1990). HIV specialist obviously aware and keeping a close eye on things too.

SCN did assure me that they are being especially careful in oncology and that the hospital is very quiet at the moment.  Probably be good for me to get out anyway. Needless to say will be keeping a safe distance away from everybody.

Once again Ian, many, many thanks for all of your help, advice, patience & time

I'm off to get my guitar out now

All the best

Mark

Hi Mark

It is never a problem to answer any question I aim at all times to put your mind at rest with anything that troubles with you.

One of the things that should always be remembered is that we are all different and solutions are not always a one size fits all but a matter of trial and error.

Whilst it is not uncommon to have a rectal discharge and not everyone experiences it, I was 2½ years in when I first experienced it, a whole weekend of diarrhoea like waste pouring out from bottom which stopped almost as quickly as it started but at the time was very frightening fortunately I was able to speak to my stoma care nurse at her home who put my mind at rest.

If you get the feeling that you need to sit on the toilet that's what you do and any mucus should come away.

You might never use your emergency change kit but it is good to know that if you need it you've got it with you. When we get back to normal and we are allowed to leave home to freely shop, visit pubs and restaurants and return back to our employment you are entitled to use, under Disabilities Rights Act, Disabled toilets which you will need a key to open the lock,nearly all the disabled toilets are operated under the National Key Scheme Radar key and you obtain one, at least, genuine key, even with a key you should carry a no waiting toilet card which allow you to use toilets in many different establishments. You should have received at least one from your supply company but if you want one with a bit of a household name on it you can get a Macmillan Toilet Card here it also comes with key fobs.

We've had a bit of a discussion over the last few weeks about Dry wipes you should always request a supply of these every month when you order your supplies. With all the suppliers supplying different sizes you need to request the number of packs you think you will need, if you've already received some from your supply company it could be that they are sized about 8" X 8" with 30 in the pack then I would think you should ask for at least 6 packs, likewise you should request at least 1 pack of disposable bags, 2 if you think you'll get them. I work on the principle if you don't ask you don't get.

Information is always available to you and it's just a click away every day of the week please don't hesitate to press button when you need it.

Regards

Ian

CC

Hi Ian

Thanks for all the info

Managed to resize my pouches ok-ish (I think) time will tell. Not leaked yet so a good sign.

Have just ordered my Macmillan Toilet Card. Will also get myself a RADAR key. Thanks for the heads up about them.

I noticed the discussion about dry wipes and will definitely try and ask for more. I seem to be getting through them very quick as well as the adhesive spray remover.

Take care - all the best

Mark

Hi Mark

Let's hope your resizing works, it's not easy being the patient when the stoma care nurses seem to be able to do it without problem, have you noticed that everything that shows you how to do something is all from the front whereas we are looking from the back.

Radar Keys no need to purchase they are given away freely by supply companies.

One supply company Convatec run a programme called me+ and it is worth joining, included in the membership pack you get a genuine NKS RADAR key in a choice of two sizes plus all lot of other information, on application you may receive a phone call to check your details and they will want to tell you about their supply sevices but you tell them you are happy with your current supplier but if things change you know where they are and at that stage you will be sent your membership pack.

Most suppliers will send you more dry wipes if you ask.

If you need more adhesive removers ask your GP to prescribe them, some of these are quite expensive but in the main they all serve the same purpose so it might be worth considering a change and I would suggest

Rhodes Pharma Ltd

Stocare medical adhesive remover reference STC 100 a

an alternative to the one you are using this is cheaper than many of the others available.

It's about £1 per can cheaper.

I changed my pouches to one I preferred and obtained a saving of £44 per month.

Ian

CC

Click on me+ to open up a new page

Hi Ian

Resizing may still not be quite right as I've delveloped a nasty bruised very sore patch. Possibly caused by still too much skin showing around my stoma from what I can gather.  I'll phone SCN tomorrow and mention it. 

Was a little worried that my prescribed Morphine tabs (zomorph) weren't as strong as the liquid oramorph. New prescription for zomorph is 10mg tabs twice a day. I was taking oramorph twice daily toout equalling 40mg in total (2x,5ml twice a day). After a little research on Google found out that they half the daily equivalent amount of morphine in tablet form but it is the equivalent to the samamount of oramorph. . Just as well checked as I was going to take oramorph as well to increase the dose!

I've not yet got intouch with Convatec, but will do so sometime tomorrow. 

Been having difficulty logging into coloplast charter but phoned them up and hopefully going to sort the issue out. Just awaiting an email from there tech department. 

Also going to get intouch with GP to find out how "prescription happy" they are going to be for writing out scripts for other stoma related items, deodorants, skin barriers, support undies etc etc

My oncology appointment on Friday has een changed into a video consultation. YAY! 

Hope you enjoy the rest your of your Sunday (although every day seems like a sunday ATM)

Keep safe & well 

All the best

Mark

Resizing can be quite problematic and with so many differences of opinion going around on how much space should be left between the wafer and the stoma, anything between a snug fit and a 2 cm space all round.

Could the answer be a seal fitted around your stoma, these are moulded to the shape of your stoma and takes up the difference if your cutting is off slightly.

With regard to support garments my reasons for justifying having them, I have a hernia which is not going to go away on it own but will get bigger and could eventually mean a hernia operation at a possible cost of 5 - 6 thousand pounds to the NHS but using preventative measures now and quote figures to him

£12.50 per pair allowance up to 6 garments per year

£49.50 per easy peel belt, part of your allowance

So if 4 pairs of boxers per year and 2 easy peel belts = £149.50 per year as against the 5 - 6 pounds for an op with no success guaranteed (I had mine operated on 2 years ago and it started to grow immediately), if we do the sums based on £5,000 ÷ £149.50 = 33 years and with the NHS cash conscious there was no contest.

Everything is down to cost not to effectiveness and as most of the things we use are used to eliminate problems and stop further medical attention. If a 10p wipe to stop your skin breaking down or repairs damage skin is compared to the cost of a GP appointment is a valid cost but unfortunately only one side of the argument is looked at which is how much does it cost not how much will it save.

I only use Oramorph occasionally during the day if the pains get unbearable.

Stepping off my soap box now hope you have a good Sunday.

Ian

Hi Ian

The seal thing sounds like a perfect solution right now. Do they shrink with your stoma?  Or is it something that has to be measured regularly and cut still?  I think I'm at the stage already when my stoma seems to be shrinking more and more each day?  Do you have any recommendations on creams, lotions & potions etc to reduce the bruising and especially the soreness of skin?

Will bare that in mind for my GP. As I remember you saying before "if you never ask you never know". 

All the best

Mark

Hi Mark

Seals are made from a mouldable material with a starter hole and come in different sizes to suit stomas and all you do is stretch to your stoma size and position and it should retract to make a snug fit all round. You can cut them into pieces and fit around the stoma but it's not necessary. You do have to mould every new seal you apply.

See

Coloplast Brava seals

I must admit that I only use one product on my skin as it has dual function as a barrier film and to help adhesion as since I have started to use them my skin has not broken out or experienced any soreness.

See

Independence Fusion applicators

Soreness usually accompanied with damaged or broken skin 

Ian

CC

Many thanks once again Ian

My coloplast charter login issues have been sorted out

Just ordered a few samples from them (coloplast charter seal & selection of barrier creams)

All the best

Mark