First Time Bag Change Nightmare!

All I can say is what a time I had!! I went to bed about midnight, all was good. Got up about 1:30 am and emptied my bag... All was good. Got up at 3:30 am and oh man... My nightgown was soaked, the blue pads underneath me were soaked, my wound gauzes and pads were soaked, had poo in my wounds.... I'm like what am I going to do?? It's the middle of the night, everyone is sleeping. So I packed myself with paper towels and just lay there. Got up about 5am to empty the bag to help keep the leaking down and when I sat up the bag fell off!! I said this ain't good... Now I got to do something. I've seen it changed hundreds of times so I held paper towels over my stoma, got up and found my supplies. So I'm trying to hold the paper towel over my erupting stoma, cut out the wafer hole, then clean the poo off of me, clean around the stoma, wash it good, then use the alcohol wipes to get good clean skin. I finally got it all done and got the bag on. Shew.. What a time. So after cleaning up the best I could I laid back down, fell asleep and woke up a short time later and it's leaking out the bottom!! Ok I'm defeated, it got me. So I got up and went in the living room and no one's awake. Ugh.. I'm getting upset at this point. So I went back in the bedroom, lay down, put paper towels in the leaking area and waited...... Finally I heard my sister awake... (I can't stay alone from all my surgeries so it was go to a nursing home or here for 3 months). So I called out to her and she came in and got me all cleaned up and another bag put on...but that bag leaked too.. It was new Coloplast bags that they sent me....the 2 piece ones you can't see through. So I said we're not using anymore of them...so we got the regular bag back on and all was well once again..I don't think I will be ready to do this again anytime soon lol!!

OMG, what memories you brought back for me... so many times, so messy that I had to use towels to hold myself while I get my supplies and then operate from my tub so I can do the final rinse before applying the new bag, then a rinse of the rest of my body after I apply the new bag. So many times... then returning to the scene of the crime to clean that up. So many times in the middle of the night... putting towels under the bed sheet so as not to ruin the mattress (now I have a good mattress pad).

Now I am an old pro and know a lot of tricks that work for me that will happen for you too. I can feel a leak before it happens! I can even empty and/or change my bag while I am driving! I have emergency kits and clothes all over the place... and I roll with the punches a little better too.

Good luck!

I remember my first time changing my bag. A memory stuck in my head forever.

I was 10 years old and still in the hospital bed.....laying down. Still on morphine drip and full of gauze and tubes coming out of my body everywhere....and I had what felt like a water balloon on my tummy beneath the sheets. I pressed the red light for the nurse.......nearly an hour later the nurse enters my room to see what I need and by then bag was leaking....I remember the nurse proclaiming with disgust, ...

"Ugh!! ....well, I suppose I need to get fresh bedding first"

......... even though I was a child, I quickly stated the obvious, my reply was :

"My light was on for almost an hour, what was I to do?? ....can we please empty this now and change my bag before you get the bedding, my skin is burning, bad and it's too full!"

Well.......without a response from her, she left the room to fetch fresh bedding first anyway.....It was late night.... I remember watching the entire Johnny Carson Show before she returned to my room,...by this time I had been laying in everything for you know how long.......then nurse was disgusted because I needed a bath..........

My feisty, pain-ridden, frustrated inner self was quite displeased with her lol ...and was giving her a groggy evil-eye, lol.

Her face was scrunched up while looking at the bag and she didn't seem to know what to do or where to begin, and since I was still only days or perhaps a week out of surgery, they had my bag on sideways, since I was laying down most of the time....easier for the NA's to empty for a patient in a horizontal position.
I asked her for towels, please, and a wet washcloth and a roll of toilet paper and my new bag. My vision was blurry but I had enough lol........I decided I was gonna make my first attempt.
While I was beginning to slowly slide up and prop up a bit in my bed to be more comfortable and get a better view of my belly, she began with her gloved hand to rip and yank on my tape around the bag under my stoma and pulled up gauze paper strips tugging on my stitches and pulled on my bag, actually trying to painfully yank it off.........OMG THE TEARS and the searing PAIN!!........ooooOOooooh that woman should be glad to this day I was only ten years old and that she was not 'helping' me THESE days LOL....grrr.

At any rate,......I made a loud squeal from the pain that upset her and she stood back with a look on her face as if 'FINE, do it yourself then!" ...............and I DID.
Toilet paper cleanup......wet rags and soap to wash......patted dry.......had my new bag ready to go first........slid it over my swollen fresh stoma (mortified by the site at that time because I wasn't used to it, but carried on with what I needed to do anyway) gently pressed the bag seal and tape down all around the stoma......finished bathing the rest of myself......rolled painfully off the bed so she could change my sheets...............
...................then thought to myself.............never again anybody gonna change my bag........I do it myself ......no matter what..........
AND..........I put my bag on the way it should be in a sitting position, with the tail opening aiming down into the toilet...........she did not like that and insisted I put it on wrong........
Even at age ten, I politely informed her that she would no longer be making that decision for me.

........and there, my friends, is the little story of my first time lol .......xoxoxo

~Doe

I suppose all of us have similar experiences with our "bag" changing process. It's just nowhere near a natural procedure, and those who have never been there have no idea. I had home care after surgery, and this great male nurse one day brought me a few pairs of those plastic underpants to try. They at least pretty well confined the mess. Also, he showed me how to "burp" the bag by opening it just enough to let the gas out, which helped a lot. When I finally had my reversal, we had a simple funeral service and I buried it in the backyard beside the dogs' graves! Good luck!

I also have home health care but I never seem to have a blowout when they're here or due to come out. Unfortunately, mine can never be reversed. There's really nothing there to reconnect. It really saddens me sometimes to know I will have this bag forever.
It will probably be a while before I change it myself again... I'm still recovering from so many surgeries and one incision I have is like a 1/4 of an inch from the edge of my bag, so it has to be done carefully and I can't see that area well enough to do it myself...

I'm sorry to hear of your experience, Doe. I can't imagine a hospital professional acting that way toward you as a young child. That was amazing you were able to do it by yourself.

That's amazing, ahappygirl, that you can change and empty while driving. I have a bag of stuff I take with me when I go out somewhere. It's mainly just for doctor appointments now, but as I feel better, I will get out more. I'm still weak a lot yet.

Thanks for all your replies.... Barbara

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

It sounds like your surgery is fairly new, so usually you are sent home with a type of bag that works in the hospital. But this is all subject to change with stomas. I know this because I had a similar experience when I got home recently from surgery. Your abdomen may change with healing. I ended up in the ER because I couldn't get the bag to stop leaking, and one was put on to hold me over. The next day, I scheduled with a wound/ostomy nurse who fixed me up. Is your home health sending a wound/ostomy nurse? They will teach you how to change and what to do if it starts to leak.

I hope that helps.
Jaxdog

Hello slow momma. Thank you for your graphic description and to all you others for joining in with your own experiences as they all made me smile at my own memories.  These are excperiences that only people with these sorts of conditions really understand first hand.  They are so much easier to look back on and laugh about than they are to live through the moment.  However, my own reasons for electing to have a colostomy was partly because this sort of experience was happening before (from my rectum, in public as well as private). Therefore the odd accident with bags leaking etc. seemed relatively trivial when compared to the mess I used to get in. Most of my funnyiest  and memorable stories are about other people's embarrassment, disgust and rejection rather than my own. However, I do have a couple of incidents where the 'odd' samaritan has come to my rescue without so much as a wince of disapproval.  Those are precious memories that renew my faith in human nature.

Best wishes

Bill

Yes Maxdog, my ostomy is new...just over 3 months. I have an ostomy nurse that comes out with the home health service I have. I had Hollister used on me in the hospital and use Coloplast here at home. I had a rough time in the hospital. Where my doctor had my stoma, I had a dip in my skin, and it always leaked. Some days it was changed ten or more times a day. Some days my nurse spent ten of their twelve-hour shifts in my room changing it and trying to keep it from leaking...my skin was awful...red, bleeding, raw, seeping, peeling and it hurt soooooo bad. They said it was like third-degree burns on my skin. My Dr. tried everything to fix me as he didn't want to move my stoma...but there were no choices left. They cut a hole a couple inches higher, tunneled under and pulled my stoma through to the new hole...the problem I'm having now, well not as bad as it was at first, my incision from the old stoma hole was seeping and would get the wafer wet and my bag would leak... But the wound is getting healed and is not as goopy so I'm doing better with that...

Well done, you! Changing your bag for yourself is the first step to mastering it, rather than it mastering you. You will look back in a few months and smile at how far you have come. I know we all have had disasters; my worst was at Madrid airport. I still have days where my bag plays up, but they are less and less these days. It will take time for you to get to know your stoma, when the best times are to change it, when it's less active, etc. Good luck, Slow Momma.

Star/Trish

Hi Slow Momma,
Sorry to hear all the hardship with your stoma upon introduction. It sounds like you have medical professionals and support at home, which is everything. It sounds like that dip in your abdomen was an issue causing ulcerations from the constant leakage. I had that problem when I had an ostomy the first time, constant leakage on the skin. I found modifying my diet extremely helpful in managing output. I'm glad to hear the ulcers are on the way to healing. Over time, this will get better for you.

Best of luck,
Jaxdog

Thanks Star...I have come a long way in a few months and each week that goes by, I will heal more. I think the reason my bag leaks/blows out so often is due to having mostly liquid stools. My doctor and I have tried so many things to get it firmed up. It will for a day or so, then all liquid and the bag fills up quickly, so I have to usually empty every hour whether I eat much or not. I don't usually eat after 5pm or so, and that doesn't help the huge night output. I'm pretty sure I'm still putting out way more than I eat. That's why I think I lost so much weight in the hospital (100 pounds) in 3 months when I was there. I hope it levels off sometime soon. I don't know what else to do...
Sorry to hear of your leaking problems too. Guess we all have horror stories to tell of our bag messes. I'm still new at it all, and it kind of makes my tummy sick to see it being changed and such, but I know once my wounds heal, I will be back on my own and have to change it.... It will all work out....Thanks again...Barbara

We all have different but similar stories. I feel lucky because I had some very good home health nurses that worked with me and even came out in the middle of the night. Besides finding the right set of appliances, my biggest improvement was switching to the see-through bags. I found a mirror and I put it in my bathroom sink, I can take the old one off, clean the site, and get a new one on in about 15 minutes. The see-through allows you to line everything up just so. It is hard to get over the squeamishness but most moms have changed worse diapers. I would like to talk to the b**** who treated that little girl so badly.
Good luck to all.

OK, I'm glad you got help to really get cleaned up and secured. I've had mine for 51 years (not a typo) and can say the good news is it will get better as you heal. The bad news is it will happen again but with less frequency. (My last one was two days ago, the first time in months.)

Some thoughts on preparing - always have your supplies together; never use alcohol on the skin under the wafer/disk as it leaves a residue that will keep the disk from adhering properly; if you have a shower handy that you can use, take a shower to clean all or most of the poo off.

You are new to this and it will take some time for your body to adjust. It will get better! If there is a support group in your area (UOAA or others) get in contact with them. They can be helpful with ideas and information.
Good luck to you!

I too had lots of leaking bags and we had to order extra from another source because we more than used up what Medicare supplied! I use and have had GREAT SUCCESS with CONVATEC 2-piece bags and ask for the strongest and best hold or adhesive!! Also, blow into the bag or release it by pulling on it and that helps too....funny no one ever told us about this even at the hospital nor did I read it but that is huge as it opens up the bag. Hold the bag with your hand on the wafer for at least 3 minutes, then go about your day. Watch what you eat and try to eat SMALL MEALS or eat about every 3 - 4 hours. Use the non-alcohol barrier that helps keep the seal and also use stoma powder to prevent the area from bleeding or getting irritated which mine has from time to time. I empty my bag about every 2 hours/more or less and again, watch what you eat. Stay away from nuts, too much fiber, lots of sweets, NO SODA and watch wine drinking--I leaked after having 2 glasses...one now is fine. I can however drink a beer from time to time with no issues.

Initially I had to take showers at 2 or earlier in the morning due to bags leaking and it took forever for me to heal! If you haven't healed you may be breaking the seal from the wounds leaking so make sure you find that out when you see the doctor. I have used Hollister bags and while the 1-piece bags are not as thick I STICK WITH THE 2-PIECE CONVATEC WITH extra strong adhesive.

I hope this helps. Trust me this too will pass and you won't have these problems but even after nearly 2 years, I from time to time will have a leak but I can usually figure out why from what I ate that day.

Good luck and know we all have been there and IT DOES GET SOOOO MUCH BETTER!!

Thanks Sweet Dreams for the info. I'm looking forward to the "better days" as these days are pretty rough at times yet. I have to empty every hour or so. It makes it rough to do anything or go anywhere because of always needing to empty. I will call to see if I can get samples of the bag you mentioned. I've only tried Hollister and Coloplast. They're okay. But not the best. I hope my output slows down sometime soon and firms up. But it's been just 4 months almost so I still have healing to do.... Barbara

Hi Slow Mumma, first of all, sorry to hear you had such a horrible time with your bag! I remember my first leaks, and it was a horrible experience, but in time I'm sure you'll learn what works best for you, and you'll be able to manage it okay.

From the way you were speaking, it sounded like this experience happened at home. I can't believe that you would be sent home from the hospital without you being completely comfortable with changing your bag yourself! I had a few complications with my stoma and had to have it refashioned twice, which meant two more operations, so I ended up having three ops in the space of a month! After the third op, I had just had enough and started to just let the nurses change my bag for me every day... until they told me that unless I started doing it myself, I had no chance of being able to get home! They weren't gonna let me out until they were sure I could care for it myself, so I was shocked to read that you went home without that confidence.

I hope things start to get better for you soon! It may not seem like it now, but things will get better!!

Sophie x

Hi Sophie96,
Thank you for your info. My situation was a little different. With all the surgeries I had and needed wound care, I was terribly weak and pretty much unable to do any care for myself. That's why I wasn't doing it on my own in the hospital. I had continual leakage in the hospital and was changed about 8 to 10 times a day until they finally decided to move my stoma. That's another reason I have trouble alone as my old stoma hole is about a 4th of an inch away from my wafer on one side and I can't see the area for careful placement. Once I heal and get stronger I don't see any future troubles..well I hope not anyway... Barbara

I meant to tell you, besides getting the Convatec 2-piece bag, get stoma powder, Nexcare tape (put around each side which helps with the leaking), get Cavilon No Sting barrier film which you apply before putting on the 2-piece bag...the No Sting is important if you have a lot of redness around the stoma, so be sure and order only that. The stoma adhesive helps keep the bag on too. I guess now I have covered what I had meant to in my previous email.

You are really new to this and it does get better, but it is a slow process as healing for each person is different. Just know that you can get on this board with any questions and guaranteed one or more of us have gone through it and can help!!

Aw, sorry you're having a hard time. Been there, remember those days - they weren't all that far off for me. It hasn't even been a year yet. But things get better with time, and they will for you too. It's hard to be patient, but they will. I agree with the other posters who are recommending Cavilon, it is perfect for broken skin, as well as Eakins (which I use also). I remember the leakage nightmare all too well; my stoma is recessed so it was a big issue. Even now I change my appliance every other day because I have not found a single one that will last any longer than that. Oh well! Not a big deal to me, since now I have my routine down pat and can do it in about 10 minutes. I'd rather do that and keep my skin in good condition than try and make a leaking appliance last and suffer the dreaded burn. Keep your chin up, Momma!!!!

Miss Megan M,
Thanks for your help. I'm doing pretty good with getting my bag to stay 3 or 4 days. I keep trying new products to see what works and doesn't work. I heard from somewhere that your stoma stops changing after 8 weeks. I have a month to go on that yet...it does burn at times and I don't know from what. It hurt so bad 2 days ago. Nothing helped. It hurt around the stoma and about 4 inches around it. Like 3rd degree sunburn. Took 6 hours or so to let up a bit. Don't know if it was from something I ate or what but I hope it never hurts like that again...shew....
I know I have to be patient and wait to heal...but it really is trying some days. I have things I need to do and can't. I'm so frustrated sometimes.
Hope you continue to do well. Barbara

Get some Stomahesive protective powder and apply generously around the stoma or the red area. Also, get the non-alcohol Cavilon no sting barrier film which helps the skin when it is red outside the stoma area, but I may have told you about that. ConvaTec makes the Stomahesive. If you end up with a lot of redness and it starts to spread and looks like a rash, get a prescription for NYStop, which is an antibiotic you put on 3 times a day very lightly, and within a week or less, the rash will be gone.

Hope this helps, and make sure to change bags every 3 or 4 days or the poop gets in the area around the stoma and sits there until you change bags, and that could cause your soreness. Hope this helps!

Mine did stop changing size a little more than 8 weeks out. I was back at work by then but still weaker than normal, that's for sure. That burning sensation could definitely have been caused by something you ate if you weren't having a leak - I personally have discovered that things containing a high concentration of vinegar are a no-no for me. Melts the barrier out within hours and BOOM - leak. Burns like a son of a gun. So I read a lot of labels and am careful with BBQ and potluck foods I haven't made myself. Ileostomies are a lot different than colostomies, which sounds like you are finding out LOL. You 100% came to the right place; I have been amazed at the degree of support and understanding I've found from complete strangers ever since this happened to me.

When I first got mine, I had two small kids. Nothing stuck to my skin. Duct tape and ShopRite bags worked for a bit. I remember I would be so happy doing a MacGyver on my stomach, then my son would crawl up and pull off my bag.

It does get better, I swear.

If you have difficult skin, try stoma seals. Some people say it works great for leaks. I need to use it for adhesive reasons.

Well, I have finally found, in my opinion, the best bag out there (sorry to have misled you, but initially the 2-piece was ideal), and it is by Hollister #8624!! It is one piece, and you just have to cut out the little hole. It is easy to put on and take off, and the adhesive is great! It has taken me nearly 3 plus years to finally find the one!!

I was going through some samples and saw this and thought maybe I should give it a shot. It was so good that it made me switch my previous choice to this one, as it lasts longer and, in general, is easier to deal with.

I hope you are coming along better than your first post and that each day there is progress for you! Remember, patience, perseverance, and prayer will get you a long way in your healing, and before long, so much of what you are experiencing or have experienced will become a distant memory!

Best of luck and keep us posted on how you are doing, okay?