How to manage my new normal?

I’m  finding it so hard to get into the normal life that once existed for all of us with my ileostomy needing attention, she’s very attention seeking.
I went out today for the second time and met with two family members both knowing that I had an ileostomy.

Being anxious about taking enough of my Stoma’s requirements AKA Whoopi, I took a large bag, I was known for carrying a small handbag as I have a shoulder problem.

I walked in “ What you got in that huge bag, you normally carry a little one?”

Oh my, why bother going out at all. Totally embarrassing moment! 


Then I opened it and showed my toilet bag and said I bought toilet roll, as not sure they’d have it here!

So now I’ve embarrassed my sister!

Im not handling this at all.

Think I just need to stay in and forget joining in with anything. 

Has anyone else overcome this challenge?

When I got home I retrieved my small handbag and found my original worn one that’s exactly the same.  I put one full of a change paraphernalia and the other one with my bits and bobs thinking that people wouldn’t notice when I went about for coffees etc when I have it full of a change.

How do you manage and ileostomy and resume life in general?

  • I must be lucky as I change my iliostomy bag every two days at home.I keep a spare clothes bag in the carboot just in case and have a small bag(the one from my bag supplier)with a couple of spare bags etc in my handbag.

    I hope you continue to try to get out and about.

    All the best

    Kath

  • Hi Kath

    Thanks for advice, I like you change mine every other day but I have no confidence in going out.  Think lock down has added to my insecurities. 
    I will try and push myself to socialise more though it takes a lot of energy and I’m in hibernation mode. 
    best wishes 

    Ann

    Best Wishes

    Artsie Ann 

  • Hi Artsie

    Like you, I have huge insecurities about going out and about (my op was in June this year).  I started off by just visiting family in their homes rather than going out as it felt more relaxed.  I've since progressed to occasionally going for a coffee or light lunch.  My spare kit is basically a pouch, disposal bag, adhesive removal wipes, dry wipes, a couple of sheets of kitchen towel, spare pants and I also found some gentle wet wipes on Amazon called "Rawganic", which are individually wrapped so nice and slim, and are also flushable.  This can all fit in a quite a small zipped bag measuring around 8" x 5" so doesn't take up too much room.  I changed my regular small handbag for one that is only slightly bigger but it has loads of zipped compartments so that the kit can go in a section on it's own and there's still lots of other spaces for purse, phone, keys etc.  It's a crossbody one so it doesn't pull down on one shoulder but you could maybe try a nice wee fashion rucksack as an alternative.  I have also used flange extenders and I sometimes wear 2 pairs of pants too - just for a bit of extra security (all hidden from sight so no-one needs to know!!  

    Fortunately, I've never needed to change when out and about but have still to find a pouch that's ideal for me as I do get leakage sometimes.  I'm trying flat pouches with a seal at the moment but they're a bit hit or a miss to be honest.  Looking like I'll need to have a convex one as my stoma shape is irregular with part sticking out and the rest lying flush.

    I hope that you can take some little steps to get some confidence back.  I get days where I just want to crawl into a hole and stay there so I know exactly how you feel.  Take care and try to just hang on in there.

  • WELL DONE YOU.Don't be embarrassed, be PROUD. You did it- you went out. It WILL get easier. You'll get used to carrying supplies out with you. I always took two bags for waste, two stoma bags, 4 hydraframes, cleaning and protective sprays, a tiny bottle of oil, and scented drops to be squeeze into bag just before use. Also  guaze wipes. I'd dampen the squares in water to clean the stoma before use. I'd take spare knickers and one stoma belt. It seems a lot written down but you do get used to it. Carrying supplies gave me confidence. When you go out you think - keys, phone, money - you now include stoma bag bits.

    • Your sister will get over her embarrassment and get used to how things are for you now. I stuck to little trips at first and went from there. My defence mechanism was to make a joke of it. This defused the embarrassed atmosphere. I used to change the bag almost every day. Soreness/excoriation round the stoma was an issue - stoma product with manuka honey helped.

    Kath
    "don't think about tomorrow"

  • Hi Blueblue

    Thank you so much, you’ve made me feel so much better.

    I am so self conscious at the moment it’s ridiculous and being in this space is really helping.  

    I think I was packing too much and have scaled it down, but I did take out spare knickers so I’ll put them back.  I’ve only had a couple of leaks both when I had flat pouches my convex and eakin slims really make me feel confident at home.

    I will keep plodding on and get more confidence in time.

    best wishes

    Artsie Ann

    Best Wishes

    Artsie Ann 

  • Kath

    Thank you. I’ve got a lump in my throat, you are so true, I need to be proud not embarrassed. It’s a fine line to cross, I’m not sure that my family feel easy with what’s happened, it’s never mentioned, keep quiet and get on with it 

    Strangely though I’ve supported them all over the years, maybe it’s because it’s an embarrassing subject. thinking about it that’s why Bowel cancer gets left for too long. We are embarrassed about talking about our problems.

    My Stoma nurse is hilarious she said “ we don’t talk about poo enough, we all need to talk about it”

    Thanks again.

    take care 

    Artsie Ann

    Best Wishes

    Artsie Ann 

  • Hi Artsie

    Good to hear that you have been out and about,  I don't do handbags but used to throw a small washbag in the car with spares in it in case and, in the year I had the ileostomy, I never used it. What sort of attention are you finding that your Stoma is needing that worries you when you go out?

    You will get used to it and get more confident, it sounds as if you are happier with your pouch now, so that is good. I was changing my bag daily most of the time and I went out normally, even flew off for a holiday just before lockdown.

    Don't worry if other people get embarrassed, just don't get embarrassed yourself!

    All the best, John

  • Hi crankshaft

    Thanks for your advice, I really don’t know what attention my stoma will need when I’m out, putting it like that it makes no sense.

    Even if I leaked I could get home, I’m not going that far. I’ve only had a couple of leaks anyway so think I’m overthinking everything.  
    I've cut the size of my spares by half and feel that will be fine. I’m hoping to go to Ireland after Christmas to see my grandchildren and then Spain in the spring to see my brother so I have good reason to get used to being out and about.

    I will stop feeling embarrassed about it like you say. That makes no sense either, I’ve had a life saving operation and my cancers in the bin. 
    Best wishes

    ArtsieAnn

    Best Wishes

    Artsie Ann 

  • your stoma nurse is right nobody talks about these things. Poo, pongs, wind and noisy farts are not spoken about. Stoma stuff can become a very large elephant in the room. 

    Once I started going out and about I always used humour to deal with the stoma and it's habits. Saying that I give it all due respect.  It gives me a normal/full life.

    One day I was going up in my small works lift- (there were four people in it including me.) when my stoma suddenly threw out the most disgusting all pervading eggy smell. I'm ashamed to say I turned and pointedly stared and frowned at the innocent guy behind me. The other two people also then stared at him with distaste. Although ashamed I've done this on several occasions. Very bad of me.

    Kath
    "don't think about tomorrow"

  • Kath

    Hilarious. I need to definitely take that on board. Fair play to you. 
    Thanks. Best wishes

    Ann 

    Best Wishes

    Artsie Ann