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3 Weeks

Posted by lifelessangel12

It's been three weeks since I got my life saver (as my mom calls her) and I still don't know how to deal. I'm always having some kinda accident where the poop leaks out from all the sides, the anxiety is getting too much, the crying and waking my mom up at odd hours of the morning makes me feel like a piece of crap, I don't know what to do I'm running outta supplies so fast, I feel like I'm going crazy I'm scared to sleep at night, please any advice is welcome 

See all blogs by lifelessangel12
Sep 28, 2021 1:15 AM
Lily17 : Hi, Angel~

You need to get into a wound & ostomy care nurse (WOCN) ASAP! Contact your surgeon's office and get a referral to a wound & ostomy care clinic near you. Get an appointment - and GO!

A WOCN is specially trained to help ostomates - at any stage - with their ostomy: teaching you how to prep your skin for adhering your appliance, sizing the cut hole in your appliance for a correct fit (and this will change over the first couple of months after your surgery as the size of your stoma WILL continue to change until it settles into its final dimensions), how to reduce & eliminate leaks, protecting your skin from leaks and/or helping it heal if your skin becomes irritated, getting your appliance to adhere properly, determining the best length of time between your appliance changes (it varies from person to person), all this AND helping you to determine what supplies suit your needs the best, and to create your own routine for your appliance changes.

It takes some practice, and there will be some "live & learn" moments, but you will find a competent, empathetic WOCN is the best person to help you learn how to effectively, CONFIDENTLY negotiate the logistics of your stoma care.

You're not going crazy, Angel...what you're going through sucks, I know. Many of us on this website have dealt with the same fears, messes, discomfort and embarrassments - 24 hours a day. At times, sleep for me seemed impossible as I was so worried about leaks from under my appliance while I slept. Smelly, irritating leaks can occur often until you and your WOCN figure out the best combination of supplies, their effective application over & around your stoma, and optimum length of time until the next change out of your appliance. Trial and error will be the route you take to become more sure of yourself and how to live with your ostomy.

It may not be easy, but it won't be like this forever! I'm a firm believer that NO ONE SHOULD HAVE TO REINVENT THE WHEEL! Whatever situation you can think of, whatever you have experienced, whatever problem for which you need a solution...? There's someone else who has already experienced it and has come up with that solution! It's just a matter of seeking out the person with the answers. In our case, a competent, caring WOCN!

Reach out to your surgeon's office, and get that referral to a WOCN. You will NOT regret it!

Check back in here, anytime. I'd love to hear how you progress. I'm certain your situation (and sleep!) will improve dramatically. : )

Sep 28, 2021 3:09 AM
Bill :
Hello Angel.
Thanks for sharing your thoughts and feelings at this difficult time. You are not alone in the way you feel, as I am sure most people on here can testify, if they can remember back to those early days.
I would endorse what Lily has written and feel 'jealous' that Eamon has written to you personally and not shared his thoughts in the open forum with us as well.
One of my mantra's in life is that I try not to give 'advice', but think it a more effective approach to encourage individuals to think things through for themselves. You sound like an intelligent and sensible person so, the chances are, you can give yourself some sound advice on whatever issues and problems you face. You can learn a lot from knowing what others have experienced before you, and this is where a site like this can be helpful. However, when it comes down to it. 'YOU' are the one who has to deal with the day-to-day stuff that can sometimes be overwhelming.
For my part, I dealt with these issues and problems by documenting each and every one (as they arose) - in rhyming verse. I shared these things in my blogs over the years and I understand that they are now available in the 'collections' section.
These early days turn into early weeks, then months, and eventually years, that you will be able to look back on and chalk up to 'experience'. Pretty soon you will be an 'expert' and hopefully will continue to share your feelings and experiences with others, who will come on here as 'newbies' with similar anxieties.
If it is of any comfort, these early days tend to be the worst and gradually things get 'better'. I hope that you can visualise that better future and work towards minimising the traumas of today.
Best wishes

Sep 28, 2021 6:22 AM
Bill : Hello Eamon.
I just had a feeling that your contribution would be one that we would all benefit from - thanks for posting it on the open forum.
Best wishes
Sep 28, 2021 9:39 AM
ron in mich : Hi Angel if you could tell us your routine maybe we can offer some tips as to why your having leaks, you,ve gotten some good advice already such as the convex appliances or the use of eakin seals instead of convex, it all depends on how far out your stoma extends. good luck
Sep 28, 2021 10:47 AM
Ritz : Angel…take a deep breath first . I went thru that and each time I got so upset I started shaking . It's correct , go to your local Ostomy wound clinic . It's most likely the wrong type of appliance for you . I had first had a flat type , but after weeks of leaking ,sores and poop everywhere … the wound clinic got me in the same day and gave me a convex type and a protective barrier ring , that did it … now I'm good . Since you're in,y 3 weeks out , just relax …order every sample from every company . Just breathe …it will get better .
Sep 28, 2021 9:38 PM
Morning glory : Angel Everyone has given the best advice. Lilly is spot on with what I was going to say. You are a going to do great. Everyone will be looking forward to hear of your progress.
Sep 29, 2021 10:23 AM
Riva : Deep breath: Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our National organization. There you will learn about foods, blockages skin care, clothing , products, travel, activities , and a whole host of other tricks of the trade. You might also want to check out a local support group near you . Just remember you are not alone on this new journey of yours. Best of luck
Sep 29, 2021 6:30 PM
Puppyluv56 : Wow, some great advise here! Just know we all went through the same thing at first. Not all products are conducive to your skin type and calling the major brands of supplies for samples will help you to find what works for you without having to purchase a months supply. Get one piece and two piece products. Once I finally found what works for me, I have only had one or two leaks, not blow outs I the past few years. It makes a difference. I go with less is best, so I don't use all the rings, pastes, preps, etc. The more you use, the more opportunities for failure. The again, some people live and die by those products. Everyone is different. Try it all! I use Just adhesive remover , dry and apply. Stays on 10 days! The two piece flange!
Good luck,
Sep 29, 2021 10:36 PM
2wheelsgood : As above, you need to see an endistomal therapist (an et nurse). Secondly I would recommend some foods that make things come out in a good way. My go to is hummus. Trader Joe's had many kinds. If you dont have one then anywhere and any kind. It makes everything come out smoothly. Also peanut butter on whole wheat tortillas is another of my fixes. These are all fattening I know. Maybe limit your intake of liquids for a bit but not too much. Drink early in the day and try to have little liquid in the evening, this will slow down output while you are sleeping. If you have other questions post them as I have seen a lot of people on this with a lot of knowledge and experience.
Oct 04, 2021 6:06 PM
Artsy Lady : Hi Angel,

I agree seeing an ostomy/wound care nurse is important... but I learned one thing that they didn't tell me. My nurse said to warm the adhesive disk between your hands before applying. I didn't have the patience to do that and tried warming it with a hairdryer. It gets warmer faster. I have had very few leaks in the 4 years I've had my bag. Just be careful not to melt the bag ????
Good luck!
Oct 04, 2021 8:36 PM
Puppyluv56 : Artsy Lady,
I too use a Hair dryer. I use it on my shin after adhesive remover and then on the flange before I pull the coating off. It does a great job at making the material pliable and easier to get where you want it and start there!
Oct 04, 2021 9:38 PM
Newbie Dana : All wonderful advice. Patience and trial and error are key. And please know that even experienced ostomates sometimes have the dreaded blowout at night (at least it will drop down to maybe one in a year instead of one in a few days). You do have to keep a sense of humor about it, and accept that sh*t happens. But seriously, try lots of different brands and lots of different styles until you find what works for you best. The companies love to send out samples - if the samples satisfy your needs, they know they have a loyal customer for a long time.

Check out Costa Medical and their Aqua Shield, which extends past your faceplate and gives you an extra inch or so leeway. Have a breakthrough? It's trapped under the Aqua Shield until you have a chance to change your appliance.

Best of luck. Eventually you will find the best products and relax into a routine with it, and it won't be so nerve-wracking. We've ALL been through those first weeks and months where we are trying to learn the best way to deal with our little friend.
Oct 07, 2021 1:53 AM
Lilpea : Hi Angel, I know exactly what you're going through. I have also only had my ostomy for a few weeks now, since 9/12. Same problems, same emotions and yes my mom came to stay with me so I imagine both our mom's our feeling our pain too! My mom has been my lifesaver through this, as my colostomy was an emergency, completely unexpected lifesaving procedure too. I believe that everyone here genuinely wants to help others through the harder times as well as being supportive through the victory's too. Please feel free to message anytime. Don't feel like crap. If this happened to my son, I would not want him to feel guilty for needing support. Everyone needs support at times and this DEFINITELY qualifies as one of those times. Hang in there.
Oct 15, 2021 6:01 PM
iMacG5 : Hi Tina. You've gotten some wonderful suggestions from some of the wisest, experienced, caring folks on the planet. My suggestion is just an opinion I hope you think about. Just like you took those five consecutive letters from your name so you could be Tina, I think you should remove the four consecutive letters that spell “less”. I don't believe there's anything lifeless about you and you seem like an angel. I think you're full of life and these wonderful folks here will make you feel even better. Lots of good thoughts coming your way, Lifesangel.