Stomas

Hi Philip,

You cheer me up!!

My husband is currently in hospital after a bowel operation 2 weeks yesterday. Initially he had a lot of trouble with the stoma not working, then yesterday it worked so well he had a leak!! No doubt he will get there and it must be better once he is allowed more solid food. How are you in yourself? He is quite cheerful, but weak, and has had some down days!!

Hi Philip. Sounds like it is early days for you so please try not to worry - it gets so much easier and you will soon be an expert. Listen to tips from fellow Stoma parents, Instagram has soon great posts that I found really useful for tips on how to change bags, skin care etc. And don't forget to ask your Stoma nurse for help - maybe you need to go through the whole bag changing routine with her and see where you are going wrong? I find it much more practical to change my bag in front of the bathroom room. I line up all my bits and pieces: small bin bag, wipes/compresses, toilet paper, spray (to take the bag off if necessary), powder for keeping the base skin dry before putting the bag back on, bags etc.  The most important thing I would say is to wash your skin with just warm water and a natural, no perfume soap.  Then dry with a compress and put a little of the powder on.  Wipe off excess and make sure the skin is really dry. Sometimes at the beginning your stomach isnt used to the Stoma and I know I had several leaks and times when the bag just slipped off.  I think once the stomach gets a bit firmer (once you are more active) and your output is more regular, it becomes easier. The first two weeks I felt like you - then it just clicked and eversince I have had maybe 2 accidents in a year.  I find having a Stoma gives you a lot more freedom, once you get used to it.  If you have any questions just ask. But dont forget it's early days and it will get easier, much easier. You can do this!

That is totally normal but it's good you can talk about. You have been through an enormous thing, huge.  You are so brave and you should feel so proud. I felt like a warrior having a Stoma and still getting on with my life. But it is completely impossible to expect you to deal with your Stoma on your own at the beginning. I spent 6 weeks in hospital (where the nurses changed him every day) then two weeks at home when the nurses changed him.  Gradually my legs were a little less like jelly when I had to face him myself! Then after a midnight disaster I realised - it's only Poop! And it's MY poop! After about 2 months I actually enjoyed changing him ... making sure the bag fitted properly, nice and clean. Ask your nurses to watch you changing your Stoma so they can advise you on what you're doing right and wrong.  Hope today is a good day.  

OMG you are such a hero! You are still in hospital!! I couldn't even stand let alone look at my Stoma for nearly 2 months after my op!!  You are not a "sad sack" and I think it's great you are posting and getting help. Look how far you've come already!!  If you have a two part bag you only have to change the base part every 3 days and changing the bag will be really simple as you just need a quick clean around him and then pop the bag on (or empty it in the day). I used to change my bag every morning, main meal at midday and I ate light in the evening. I normally changed my Stoma into his "pjs" before going to bed and then just emptied as I needed in the night. Just try to eat little and often and introduce fibre and things like caffeine etc very slowly.  You'll soon be eating and drinking normally and living your best life. Nobody at my gym could believe I had a stoma - I was so proud!!  Go you!

So far so good.  Will ask for a nurse to be that extra pair of hands, and do the full changeover about 15:00.  Closely watched stoma nurse apply, and have now done twice myself under her supervision.  Today really will be the test! More confident handling "the limb" (who might become known as "Leon"), and less scared of hurting myself.  Just worry about activity during change.  Setting out the stall on the bedside table here is reassuring, Bless her, my stoma nurse has just WhatsApped to check how I'm going.  Above and beyond the call of duty at the weekend!

Think I'm now ok on sequence, where everything goes, and all the "flat hand" stuff. Proof of the pudding though.....

If all good, planning for bathroom layout at home is next step.

Still gets scary when my skin gets damp because it's warm in hospital - always think I'm leaking again!  Luckily we're so mean our house is never that warm!

Great news! Yes once you have your routine going it will be like second nature. You'll get to know when active times are and avoid changes at that moment. But if he catches you on the hop just grab the bin bag and put it over him and let him go for it!! I think that only happened about 3 times in an entire year. If you have the 2 part bag you should have a little measuring tape thing - a strip of paper with all sigferent stoma sizes on. You dind the one that fits your stoma, sww what the measuremwnt is and then pre-cut your base rings to the right size. I used to put it undee my armpit whilst I was cleaning him so it wouls get soft and easiee to stick. Just be patient with yourself - you really are doing so well. At home you'll be eating more so the output might change but it will all calm down in a few weeks.

I'm on one-day convex ring bags for now, underpinned below by a half "Hollister Adapt" hydrocolloid dressing, over whixh top and bottom halves of Salts Mouldable seals, then bag, serious flat handing to secure outer and then pressure around the convex ring to secure inner, then an overlay at the bottom with a Coloplast Elastic Tape to ensure all sticks.

Sorry, lot of detail.  All that pratting about is needed because of all the normal creases, folds, then scar plus medical superglue from first op, stitched wound where surgeon went in 4 days later to reverse a prolapse, etc etc. Like the blasted dark side of the moon now! Oh, and apparently a but if a flipping peristomal hernia just sbove.  Got the full damn set of complications!  At least it has flowed, albeit quite vigorously initially, all the time,

Should improve as swellings reduce, but then need revised template and possibly to rework the solution.  Think I'd maybe rather work with hospital stoma nurses who've lived through this with me than the Community Team, but will have to see how we all get on.

Enough from me for now.

Enjoy the rest of your weekend folks.

Bit odd "replying" to myself,  Change done 98% by me, just a bit of nurse help peeling the various sticky bits I'd forgotten to prep and a little cleaning.  Removed bag didn't have much evidence of seepage, and underlying skin looking better. 

Just need to be more obsessive and precise - going to extend my procedure notes.  Did after all spend years telling all my auditees that they needed up to date documentation to ensure consistency!!

Like a lot of things, seems over half the battle is preparation, the rest practice.

Hi Philip,

It sounds like you are doing brilliantly.

You’ll find that once home with the right products you will find a routine and places to put your stuff where you need it.  
Honestly I used to dread changing the thing, I’d have to lay everything out and still have to go through the routine.  

In no time i just found my way of sorting myself out and without trying it became second nature and quick also as my stoma became more pronounced and the operation swelling reduced it was easier to deal with.

Best wishes.