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Having a bag
Hi84
32 Posts
Hello Everyone

hi is has been a journey to say the least! Having chemo for for 6 months then waiting. Bone scan told I had cancer in the bone and the liver plus colon! Then a month later no cancer in bone or liver yea!!
Now surgery on Jan 24 with the the a bag! I think having the idea of hAving the bag having to change it I find very stressful!! I even though of not having the surgery today.
Have a good night!
cheers
22 Replies
Boby1511
1037 Posts

@Hi84

hi there.

you’ve had a great response to chemo! Congrats.

I have a colostomy. It does suck. It is a huge adjustment. Some people fair better than I did. Took me just over a year to adjust! But I would say I am mostly there, acceptance.
you do adjust and adapt eventually.

rub your tummy before surgery.

wishing you clear margins and a swift recovery! Bring gum, it helps the bowels.

sending hugs

Whitelilies
2267 Posts

@Hi84 Hello…..it is wonderful to hear how well chemo RID of the cancer in bone AND liver! This is amazing……

So, I assume, the surgery, is to create a stoma….Ileostomy? (right side)….or Colostomy? (left side)…

Not sure if during these covid-times, but you should have a pre-op…where the Nurse will mark an “X” on your abdomen, to guide surgeon, where to create stoma….Nurse asks you to sit on a chair/gurney….she looks at folds of your skin /etc/and probably more “medical reasoning”…

As you recover from surgery…..you will be shown, right there, in hospital, from the Ostomy Nurse, how to empty the bag…..perhaps even how to change…..OR/AND…when you arrive home…..there is home care (ONT) and a qualified person, comes to you….teaches you….shows you, how to change the bag…..I had about 6 home visits (over 6 weeks)….you can ask them any question….While still in hospital….they WILL give you “samples” of ostomy products….take it ALL…..these costs do ADD up….Coloplast and Hollister are both terrific, Canadian Products….if you reach them direct- you can ask them to mail you some samples too.

Please know that in ONT, you will qualify for about $1000 per year, for Ostomy Products…..here is LINK….to read….perhaps even PRINT the forms, as your Dr/Oncologist must sign off on it too.

ADP (Assistive Devices Program)

Please keep ALL receipts for any form of “product”…..they say they may audit you…..fine and well; keep all receipts….

A bit down the road (and only if you wish….) I can share with you, my GO TO list of products, that I found helpful…..Yes I had an Ileostomy, for 6 months…..I had radiation….at Sunnybrook in Toronto….Surgery #1 at North York General Hospital/3cm tumour removed…..6months of Ileostomy…..time to heal…….Surgery #2 to reverse Stoma. I was told Temporary Ileostomy…but I do not recall “hearing” that word….I was in a state of shock, for a long time….truly…..

I will hold…..ask any question….so many of us, will answer…..

FOR surgery…..pack: Ear Plugs!! Lip Balm…anti skid slippers…..water bottle, unscented hand lotion….ditch the robe-grab an extra blue trendy gown, and follow instructions on when they wish you to walk - unsure if patients are even permitted to walk in ward/hallways…thx covid??? scope or listerine in tiny spray/travel size…..feel good & MINTY!!! dry shampoo…..wet wipes….you may need to just feel fresh with that….

Wishing you only the best!

Whitelilies

Hi84
32 Posts

Thank so much everyone! Pre op tomorrow

@Hi84 - All the best tomorrow. We will be thinking of you.

Keep us posted,

Lacey

Boby1511
1037 Posts

@Hi84

wishing you best!

don’t worry about those forms. In on they will give you one in hospital. It needs a doc signature.

hugs!

Boby1511
1037 Posts

@Hi84

take a pillow! Or two! And blanket. I moved right in. Slippers. They let you. Wet ones get free in hospital 😉

they recommended gum with colostomy. Helps the bowels get going.

Whitelilies
2267 Posts

@Hi84 Hello……wishing you the best, for your upcoming Surgery/Jan 24th…..

How was Pre-op? Did Nurse mark an “X” on your abdomen, for stoma site? (Mine was lower, right side)

TIPS to pack, for surgery: Lip balm, anti skid slippers, dry shampoo…EAR PLUGS/2 sets…..hand lotion-no scent….ditch the robe- take another Blue Trendy Gown….Scope in a mini travel size with Spray!! Feel fresh breath when you do NOT feel like getting out of bed…..paper & pen, to jot down names, of kind medical staff/thank you notes, later….technology & charger…..water bottle….wet wipes, for your own “mini cleanse”….label your bag well!!

TIPS for Bag…..(I will keep it simple now…..more later)…..Accept all samples from the Ostomy Nurse…..products are quite costly…Coloplast & Hollister are top Canadian Brands; even reach out to them, direct, and ask for samples…..in ONT, you qualify for about $1000 per year for Ostomy Products…..forms to be shared with you at Hospital/Dr signs off too…..KEEP all receipts…..rumour has it, people may be audited…..fair & fine! That is it/for now….

Focus on Monday……perhaps prepare your home/comfy zone…..ie bed, fluffy pillow, tv converter on night table…meds on night table…glass of water…..fill up freezer now, as you may not feel like cooking down the road….stock up the pantry/canned goods….

When you catch your breath….perhaps let us all know, how things went.

Wishing you the best!

Whitelilies

Hi84
32 Posts

Good morning

I had my appointment and marked two spots because I have fat roll hard to find a spot Lol Had my COVID test yesterday and thinking about packing today.

they only keeping me in the hospital for two days the home ! Nurse ti come in to help not sure how many times as of yet! Hope lots lol

I have been out walking each day to keep my mind busy. I think the hard part is you have to go in by yourself to the hospital the day of the surgery.

But one person can visit that day of.

thank you for all your support

😊

Whitelilies
2267 Posts
Hi84‍ Hello.....wishing you the best, as surgery date is near.......So funny; I too had TWO X's, to mark the (2) spot(s)...I recall being told.....that during surgery....my surgeon did NOT like "surprises".....so with 2 Xs.....if anything went sideways.....he would have the "other side/X" to carry on with.....(doubt it was your fat !!)
In ONT.....the home-care Ostomy Nurse, is assigned for approx 5-7 visits.....(I got 7).....they will teach you how to change the bag......and you can do this too, while they are there, to guide you......the appts should be spaced out; ie once a week, as you will not be changing much more often.....maybe every 5/6 days....you will get into a routine....
Perhaps it is best, to be at home, after the surgery (2 day stay)....for a REAL rest! You will have peace & quiet.....recovery is best with your own duvet! It is wonderful to hear, that you can have 1 visitor, the day of your surgery.....
Before you leave/check out......perhaps get phone numbers of where to call IF things are not "moving along".....

Warmest Regards
Whitelilies
Hi84
32 Posts

Hi

Thank you still much for great advice. I was told the exactly the same thing from the nurse about the doctor ! Lol

eating Everthing I can until 10:00 pm

lol

Whitelilies
2267 Posts
Hi84‍ Hi....savour every bite tonight!
When you are home/healing......perhaps I can send you/later, some more "tips" on bag/products/changing etc......now just munch on what you wish!
BUT: I need to share one tip (can't hold it in....)
Try to buy/now/online/ a Sweater/Cardigan WITH pockets... for winter a dark colour....brown/grey.....for nicer weather.....a light blue......you can put your hands IN your pocket(s), to check , if your bag needs your attention..... and NO one will "know".....it is discreet.....simple......a great way without having to find a washroom....simply to "feel" if you bag is filling/quickly....and needs to be emptied...... Even a Hoodie with pockets will fit-the-bill!
Have a peek at site below.....and remember; please KEEP all receipts for all Ostomy Products....
Regards
Whitelilies
https://www.ontario.ca/page/assistive-devices-program
IamJay
129 Posts

Hi @Hi84 and @Whitelilies

I hope it's ok if I am following your conversation….I just had my surgery 8 days ago and am still in the hospital. I have had a colostomy and hysterectomy. I live near Calgary

It's taking a while for my colostomy to start working and I've been dealing with gas and pain from the gas. They had me on clear fluids and have worked me up to a regular diet. I'm picking through the choices so that I'm eating is soft and not gassy. Finally the food tastes good and I feel hungry before meals.

Ive been on bedrest for the full 7 days since surgery and when I tried to stand with the nurses help I was too dizzy to come completely upright. They finally gave me a spirometer and I will start using that to increase my lung compacity so hope to be more ready to stand later today..

@Hi84 I hope your surgery went well….what province are you in?

Whitelilies
2267 Posts
IamJay‍ Hello......I hope today you will stand!! and more to come......it really does take time, for your body (and soul) to heal......before you know it....you will be home! And you can rest there (no bells, chimes, beeps from machines.....no PA Announcements...Bed 2...Bed 3 Room 111, etc) truly rest....get needed deep sleep!
It takes time for the Colostomy to "work".....it takes time for things to "thicken"....it may start as very liquidy.....this is "new" to your body.....yes, eat light, non greasy....soup/fluid/water/yogurt/etc....for now.....
I am SO happy you joined this thread: OF COURSE, you are MORE than welcome too/others too.....we are all here to support one another.

Wishing you well....a speedy recovery.....and keep sharing......
Regards
Whitelilies
(soon, you will get taught on how to change your bag.....empty your bag.....accept all samples the Nurse provides......get phone numbers, at the hospital, for when you are home...you may have an urgent question.....get clarity on who/what organization comes to your home, for Home Support/Ostomy Care....get tele number...I am quite sure iiiin Calg/AB there is also a Govt Reimbursement for such products.....ask Nurse.....as I share with many folks......get yourself a pretty sweater/cardigan, WITH pockets....order it online....Old Navy.... H&M.....Amazon.....pink?red?blue? it is your way.....when you are OUT & About.....with friends....to simply put your hands in a pocket(s) and "feel" if bag needs your attention......not really to fully change....simply to feel content amount.....need to empty?? you can "feel" with your hand.....simply find washroom & empty....Good To Go! Continue Your Day ! Be Out! (with mask !! ) (Pack in your purse.....a "KIT".....in this kit....is a FULL change of bag....full full full....add wipes....travel size of your fave scent.....to smell like Roses in a garden......a tiny bag/your own personal garbage bag....why not?) this way....with KIT.....you can go anywhere!! Feel Confident!!).......more info/tips.....when you get home......I will not overwhelm.....these were just basic & simple ideas.....to get the heck out!!
Hi84
32 Posts

Thank you!!!

Hi84
32 Posts

Yes please follow us! I hope you are feeling better today. I am thinking of you wishing you good vibes. Here in Ontario in for two days then home!

Hi84
32 Posts

Thank you

Whitelilies
2267 Posts
Hi84‍ Hi....always look at the Bright Side - you ARE having your surgery.....this IS the best news (these days!)
Embrace it......and soon you will be home....back under your fave duvet and soft pillow....
TIP: eat light......for a bit of time.....ie soup.....tea........smoothie....mashed potatoes.....banana......

Whitelilies
Haemish
149 Posts

@Hi84 Wishing you best of luck with your surgery. If you are reading this and still in hospital please listen to your nurses. Don’t let the doctors rush you into eating solid just to get you out of the hospital. Take it slow, eat soft foods, chew gum and get up and moving with daily walks on your floor. It took a bit mentally to adjust to things. Seeing that bag hanging from me, afraid I would mess up somehow changing it. Not to worry, there are lots of people on here to help you as they helped through each stage. There is tons of information so just take it in bits as you need it to help you so you don’t get overwhelmed. I know you won’t see it now but the bag does have its advantages. I wish you the best and you will get there like we all did. Ask for help, even if it’s just to vent.

Whitelilies
2267 Posts
Hi84‍ Good Morning......how are you feeling? how are things "moving along"?
Share when you are able....
Warmest Regards
Whitelilies

IamJay‍ Hello.....Good Morning.....How are you feeling? were you able to stand? walk a few steps? I do hope so!
How are things "moving along"?
Share, when you can....
Whitelilies
XYZ123
23 Posts

Hi @Hi84 Unlike most of those responding in this forum, I cannot speak from my own, personal experience, but I asked my husband, who still has his ostomy from his bout with cancer over the past 2 years (the ostomy temporary, but an abscess that developed after his resection kept coming back to haunt him so the reversal is delayed until it is resolved…things are looking up though). He has a bunch of great tips that could be useful.

1.) It might be easier to change your bag while sitting on a chair in front of the toilet. We still have a dining room chair in our bathroom for this purpose

2.) Ostomy belts rule! You can get these from Amazon. Our insurance company expenses them, as well as our other ostomy supplies. They come in all colours and give a bit more confidence and stop it bouncing about.

3.) Odour control! Everyone has to find their own system that works, but my husband uses SG3 and there is no smell after! It is night and day compared to the stuff he first used. On the flipside, it is a messy and bright blue and seems to get everywhere and the lid is dreadful (but does wash out). We use Payless Medical for all ostomy supplies and their prices seem fair and no issues with our insurance.

4.) You can shower, hot tub and swim with the bag. But let it dry completely before trying to change it as the glue gets super sticky otherwise. But don't let your worries about leaking stop you from enjoying life (easy for me to say I know)

5.) Look for tips and forums online. My husband loved veganostomy (note he isn't a vegan, but the advice is priceless). He was having issues with rashes but learned a “crusting” technique from this forum and now uses it and has had no issues. There are forums featuring men and women and one will resonate with you I'm sure.

6.) Try to cut down on late snacking to minimize the amount of times you need to get up in the night.

7.) Find the sweet spot in terms of changing frequency. My husband trends every 3 days, sometimes longer and sometimes shorter. His Ostomy nurse told him 7 (possibly because she was trying to be budget friendly) but for him, that was BAD advice.

These were the main tips he had to share. I'm sure others have many more. All the best of luck as you recover, and adjust.

Cynthia Mac
3871 Posts
What an informative post, XYZ123‍ ! Thanks for sharing your experiences. It’s just one of the things that makes this site so helpful.

I’m going to add a couple of hashtags so people can find your post down the road:

#ostomy #ostomybagtips #ColonCancer
IamJay
129 Posts

Thanks @XYZ123 for that good information

@Whitelilies @Hi84 @Haemish

I am still in hospital recovering from my surgery on January 14. Having some issues with infection but it's getting better. Have only been up for short 2 minutes to stand by my bed.

I'm anxious to get home but also nervous because I'm so week now. We get so much care in the hospital it's hard to imagine doing this alone at home. Perhaps I'm jumping too far ahead of myself….I guess I'll know when I'm ready to go and I won't be asked to go until I can manage on my own with my partner at home.

There's lots of recovery left.to.do.

Judy

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