Need advice about stoma which I have had since January this year

Hi and welcome to the online community and the stoma support group I'm sorry that we have had to meet this way.

Its true to say that when we are in hospital recovering from surgery and we have nurses around us stoma management seems to be a dawdle but the minute we are left to our own devices at home it becomes a different ball game when something unexpected crops up it becomes hell, and we've all felt that way at sometime or another.

The support group is your life line and we are here to help.

Am I right in assuming that it is every couple of weeks you experience a leak.

Many things can contribute to your bag springing a leak from

Hole the wrong size 

Skin not prepared properly 

Skin having creases, dips or being raised

Skin damaged.

Every so often we have to revisit our stoma management procedure and

Resize the pouch hole

Make sure skin is prepared properly by using a barrier film between pouch wafer and skin and is completely dry before attaching.

Tip warm up the pouch by place under your arm whilst preparing to attach it

Do you need to mould a seal around your stoma to obtain a snug fit.

Examine skin does it have any dips or creases that could cause the flange to rise or not adhere properly and allows your output to search away out, any little part of non adhesion is fair game for your output to escape. The use of alcohol free stoma paste can help sort out dips etc. (See also below)

If your skin has been damaged or broken down because of leakage then it is unlikely your pouch will not adhere properly and needs to be addressed before attempting to attach the pouch.

Most of the above are minor problems and easily rectified by tweaking your procedure the major problem is skin breakdown and having it attended to by either applying a very light dusting of stoma powder and rubbing it in, this powder has no medical properties its purpose is solely to dry out the skin and care should be exercised to ensure that all  traces are removed before applying the pouch. A little bead of alcohol free stoma paste (Stomahesive^® Paste Hydrocolloid-based protective skin barrier. Use as a filler in uneven skin surfaces to help increase ostomy system wear-time and protect skin) can be used to protect skin.

To help your pouch adhere a bit better you can also apply flange extenders around the pouch flange for some extra protection. Brava Elastic Tape is one example and is a good product.

Sweat can affect the adhesion of the pouch if it gets under the flange.

It is fine to have a bath or shower with your stoma bag on, if you prefer. Remember that the adhesive is designed to actually stick more tightly when exposed to water, so it may be better to change your bag before you bathe or shower

You do not need a special stoma bag to go swimming, though some ostomates prefer to wear a smaller ileostomy, urostomy or colostomy bag or a stoma cap whilst they are in the water. ... Some stoma bags have covers particularly suited to swimming (and showering and bathing)

See also brava flange extenders above which you should use when swimming 

If you have concerns you can use one of the little stickers that you'll find in the box to cover the filter to stop water getting into the pouch.

The majority of pouches are designed to repel water and all they need is a quick pat over to dry off.

Probably for the most of the time pouches do behave themselves but occasionally  something goes wrong and our world falls apart and I am sensing that you've had a few mishaps and they have pulled you down leaving you with the feeling that is bad enough that you have to wear a pouch but they should work properly which when they do we think nothing of it.

I have tried to address all of my what I think was your questions would you like to come back at me and maybe we could discuss this deeper.

 having a stoma is supposed to improve the quality of life after bowel surgery and help you live your life with a stoma which is not part of the disease but a very big part of the cure.

Please come back with any questions you have on the above and we can go further into any problems that you still may have.

I am here to help every day of the week from very early until very late to answer questions.

Here when you need me.

Ian

CC

Ian, 

Thank you so much for your detailed response. What do you mean by a skin barrier film?

Also where would you get alcohol free stoma paste? Sounds like it might be a good idea.

I think I am finding the (I think flanges is the right word) stoma seems to be creasing under the stoma, hadn't noticed it before but the last couple of times, nice and smooth at the top but wrinkled at the bottom. I don't think I am applying them differently but I guess I must be.

Maybe the elastic tape flange extenders would help here?

Also where do you get the stoma powder from.?

I have been completely confident until recently I can hardly sleep worrying the bag is leaking... 

Hi again

A skin barrier adheres to your peristomal (around the stoma) skin, helping protect your skin from stoma output, and attaching the pouch to your body.

It can be applied by using a wipe, spraying on or by using an applicator.

The one I swear by is INDEPENDENCE Fusion and was recommended to me by my stoma care nurse.

Stoma paste Stomahesive paste again recommended by stoma care nurse and my pouch supplier.

If you remember back to the beginning we are told to fold the flange (wafer  base plate in half and starting at the bottom of your stoma and roll the rest upwards smoothing down as you go. How is you skin around your stoma, it might be worth trying a protective seal Brava Protective seal (this gives information)

Stoma powder Stomahesive Protective Powder

Flange extenders Brava Elastic Tape

The above products are everything I use and of course other brands are available (except not all pastes are alcohol free and the ones with alcohol do sting when it comes in contact with damaged skin.)

Being an ostomate is not a perfect life, for one thing we are all different in our body make up and it can be a trial and error to get the correct way of managing your stoma but it is very doable although frustrating when you wake up at 3am with a leak and if you're unlucky spoiling the bed clothes but all you can do is sort it out without rushing it and put in behind you. 

All items listed above give you, when you open up the green links, the opportunity of requesting a sample (I'm a great believer in getting samples) which the manufacturers will gladly send, Coloplast who supply the two Brava items and Convatec who supply the Stomahesive paste and Protective powder may phone you to discuss your requirements but it's just a formality to make sure you get the right product (and try and convert you to change to their delivery service, but you just tell them NO.)

Once you have tried them and if you find them useful you just add them on to the monthly supplies order through your normal supplier which shouldn't be a problem unless you use one particular supplier and if you tell me the name of yours I'll tell you if you should expect problems.

You might be interested in this me+ run by Convatec and by joining the program you get loads of useful information, a genuine radar key in a choice of sizes and access to their team of nurses.

I hope the above gives you the information you wanted if not just come back to me, it is absolutely no trouble at all to answer any questions.

Be positive there is no use worrying about this and losing sleep. Remember the golden rule: don't eat after 5 or 6 pm, empty your bag before you go to sleep and inspect all round your pouch for any tell-tale signs, like tracking or bulges in the flange that might cause a problem.

Please keep in touch.

Ian

CC

By clicking on any of the green text above will open up new pages for you  and will take you out if the Macmillans forum.

Hi Ian

JennyLou's post raised a few questions I have 

The info on your reply was fantastic and I learnt a few things I had no idea about, one being last meal at 5 to 6pm.

I have requested a few samples that you mention.   You have vast knowledge of life with a stoma and it is so reassuring that you are here and happy to share. I have only had my stoma since my op on 4 March so early days for me

Kind Regards

Inanna xx

Hi Ian,

the golden rule of not eating after 6pm is a great idea. I will certainly try and stick to this. I am emptying the bag before I go to bed, read for an hour or so and then go back to toilet to empty it again.  I have felt a little more confident after your messages.

i posted another message to which I have received no response and I hope you could offer some advice. It is concerning weight issues. When I went into the hospital for my ilestomy I weighed 9stone 3. I was in hospital for three weeks, the operation suffered a complication where my bowel was perforated and the wound became infected, I got pneumonia. When I eventually got home I weighed 7 stone 11. I am finding it really difficult to put on and maintain weight. My appetite is still not as it was before the operation and my husband gets frustrated when I can't eat all the food he makes for me. Obviously I am not doing it on purpose, it is so difficult to eat when you simply have no appetite.

i really need some advice of what I should be doing to help. Three months after getting home from hospital I have only reached 8stone1 and 3/4.

your help would be hugely appreciated 

regards

Hi Jennylou12,I had a urostomy last September and lost a stone due to paralytic ileus.I left hospital weighing 7stone 8 lb and had no appetite.I ate little and more often when I returned home,I found those sandwich envelopes easier to manage than bread.I filled them with turkey or chicken slices,ham or cheese.I ate small amounts of soup and then built up to jacket potatoes and omelettes.I also managed savoury biscuits with cheese.For something sweet I ate yoghurts,mousses and small rice puddings or jelly.I now weigh 9 stone which the heaviest I’ve been since my mid 20’s  and I’m 59 now.Having always been underweight I’m amazed to have put the weight back on plus a little extra.I hope your appetite returns soon and that you regain weight.Love Jane x

Hi Ian

Just had an  temporary ileostomy after a right hemicolectomy on 1 April. Getting on ok but have had a couple of leaking incidents and have seen the post by Jennylou and have tagged along.

I have had some sore skin around the edge of the stoma so have been given some flexible circles by my stoma nurse to put around the opening of the bag to protect the skin and also have been putting some healing powder on this and where the stitches were. This has helped with this but the bag has leaked a couple of times when I have just been sat down.

I will follow all the tips that you have put in your message to jennylou. I have a lot of little sachets of barrier film  that are a little impregnated cloth hat I was given when I came out of hospital so I will try these. Would I use these when my sore skin is completely healed?

I would also like to try the Brava elastic tape that you mentioned, I clicked on the link  for a sample but was confused when that asked for stoma size. Could you explain to me how I find this out?

 Sorry to hijack your post jennylou but it seems our problem is similar.

Also my stoma nurse said that the bags would come ready cur to size, I have had one delivery and I have to cut them myself. I realise this is because the stoma will maybe shrink, when will it be the size it will stay at and how do i know this? Do I then tell the stoma nurses the size? Sorry, I realise that all this would normally be talked about at a clinic but these are not happening at the moment.

Thank you  the information was really helpful.

Hope you can get things sorted too jennylou

Hi phoebe

I'm sure  won't mind you asking some questions in her discussion.

I'm sorry that you are experiencing leakages which I'm sure is causing the breakdown of your skin.

The little circles that go around your stoma between your skin and pouch are called SEALS and all manufacturers supply them. I see you have been given some stoma powder that you have been applying between your skin and the seal.

When using stoma powder it should be applied sparingly.

Any excess powder should be wiped off using a dry wipe before applying the seal.

Stoma powder does not have any medicinal healing properties.

Not removing excess powder may have been the cause of your pouches lifting off when you sat down.

BARRIER WIPES

You can use these on both damaged and unbroken skin as they form a protective film between skin and seal/Pouch wafer. They are particularly good for ensuring a good adhesion on top of the stoma powder.

Suggestion

I was recommended these Fusion Protective Barrier Applicators by the stoma care nurses at my hospital.

They are 2 in 1 barrier film and adhesive enhancers and have found them really good both as a skin protection and making my skin tacky to assist adhesion of my pouches to my skin.

COLOPLAST ONLINE SAMPLE REQUEST.

When you start the request process they ask about you, and at that time they don't know what samples you are requesting, so they start with you stoma size which is the size you cut the hole in your pouch you just fill in the size and proceed with request for BRAVA ELASTIC TAPE.

PRE CUT BAGS against CUT TO POUCHES.

At the beginning, your stoma is likely to change and shrink

It is normal for your stoma to change in size and/or shape, especially during the first 6-8 weeks after your surgery. The initial swelling in your stoma will usually have settled before you leave the hospital. During the 4-6 weeks after you are discharged, your stoma may shrink further in size.

Once you are sure that you stoma size has settled and depending how you order your supplies you can either ask your stoma nurse

to measure your stoma and make you a template that is sent to your supplier who will cut your pouches for you each you order

or you can use the plastic covering that comes off your pouches and send this to your supplier.

Pre-cut pouches are either

stock items and you probably will get a new reference number.

Or stock pouches with a starter hole and  your supplier cuts out the hole.

It should be noted that if you do use pre-cut pouches you still need to measure your stoma regularly.

The Bodach advice: Always keep a few cut to fit pouches for emergencies.

I hope I have covered all your points, if you need more information or help please don't hesitate to come back

Phoebe don't worry about asking questions, that's what I'm here for to help you find solutions.

Please feel free to ask me any questions that you come up with, all you need to do is give me a shout out by starting your message by

Typing @The BODACH  

When a little blue box appears with The BODACH in it click on the box and this will change to a solid blue box in your message and look like  when you press send.

Ian 

CC

As a Newbie (op was 13th April) I am also on a steep learning curve & will post some questions separately. But reading this answer expained an experience I had -

"It is fine to have a bath or shower with your stoma bag on, if you prefer. Remember that the adhesive is designed to actually stick more tightly when exposed to water, so it may be better to change your bag before you bathe or shower."

I had thought that having a bath would help to warm and soften the adhesive, and so my first bath was with the to be changed bag . . . well it was quite a palava to get the bag off afterwards . . . so now I know why! Thank you so much.

No problem

sometimes the question you need to ask will be asked by another member or it may crop up in my information posts.

Any time you need to ask something, anything don't hesitate, that's why I'm here.

Ian