Desperate for Newborn Advice: 3 Weeks In, Feeling Overwhelmed

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 kind of 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 out of supplies so fast, I feel like I'm going crazy. I'm scared to sleep at night. Please, any advice is welcome.

I sent you a message, Angel. Hope you got it.
Eamon.

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 or 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 and 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 or 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. : )
Lily17~

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
Bill

Hi Angel, I feel for you, Angel. I was in the hospital for a long time after I got my ileostomy, so I had some time... with lots of drugs! In the hospital to get used to it, as much as you can get used to it! Honestly, you may never get used to it, but I promise you will learn to live with it.
First thing, I see what looks like a hospital transparent bag. Have you seen an ostomy nurse since the hospital? You need the bags that you cannot see through. You know it's there stuck to your little belly, so there's no need to keep reminding yourself by having to look at it every day and see all the nasty that's in there.
Leaks... leaks happen even with veterans of the baggie. I'll suggest that you use bags that have a hard plastic pad that curves inward. The best one is Convex Hollister one-piece or two-piece system. I use Hollister, so I'm biased, but they are the best I have used. The pad/wafer that sticks to your belly has to dip inward around the edge of the stoma so the edge pushes into your belly, keeping it tight around the stoma edges. If you use a flat sticky wafer, the nasty stuff will seep under the edges and it will leak around the edges. This will burn your skin and cause problems. I posted some photos of the things I use. Eakin Seals are a lifesaver. The sticky stuff will be eaten away by stomach acid. The Eakin Seal will at least double or triple the days you get out of one bag/pad. Eakin is a round disk of the soft sticky stuff and goes on first, under the wafer. Push the Eakin down firmly but gently around the edge of the stoma, then put the convex wafer on top.
Leaks around and under the wafer. You can slow down a leak by putting surgical paper tape in a square, one strip top, bottom, and both sides. I use the 2-inch wide flesh-colored tape. Six rolls of this on Amazon for a few bucks. I use this tape every day and replace it if it lifts at all. I swim in the ocean, big waves with this tape, in a pool, a lake, the shower, and it will not come off until you take it off. That tape has saved my butt more times than I can count.
Very liquid output is the norm for an ileostomy (when the entire colon is removed). A colostomy is when you have some of your colon left, output will not be as liquid.
Very liquid output will wear away the sticky on the wafer very quickly. My suggestion is something called "Pearls". These are little packets, like a pack of sugar. This stuff can absorb a huge amount of water. You pop one in every time you empty the bag. This will make the contents thick and lowers the amount of free liquid in the bag, so no sloshing around when walking or in bed. You will cut down on your bathroom visits and you will get very few leaks with the thicker output. You can try to change your diet to try and make it thicker, but the "Pearls" will do even better. Many leaks happen because very liquid output seeps under the wafer.
If you try these things, I guarantee that your life will become much easier, bathroom visits less frequent, and most leaks will stop. I've done this for a long time and these steps actually work. I see from Google Earth that there are some open recreation areas in that area and a lake. If you do as I suggested, you will be able to walk in the park and not have to worry about leaks, guaranteed. I hope your insurance gives you these things because they can be expensive if you have to buy them yourself.
Please let me know if you tried them and if you do, how did it work for you?
Hope you feel better soon, Angel. If you have any questions, just ask. These have made my life so much better. I've had leaks in a classroom in college, on a bus without a bathroom, on a train, and last but definitely the worst... in the security TSA checkpoint at San Francisco Airport! I wouldn't wish that on my worst enemy!
All the best and keep me posted, Eamon.

Hi guys, I thought I posted this to the comments but I sent it as a private message. So here you go Bill. Just something I found that changed my OstoLife!! And made me feel that I could live with it... take care Angel and try to be patient, it will get better.
Eamon XX

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
Bill

Hi Angel, if you could tell us your routine, maybe we can offer some tips as to why you're 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.

You really need to see a nurse so they can see what the problem is to get on top of it so you can be leak-free, happy, and healthy.

Angel, everyone has given the best advice. Lilly is spot on with what I was going to say. You are going to do great. Everyone will be looking forward to hearing of your progress.

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.

Wow, some great advice 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 month's 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 blowouts, in 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. Then 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,
PUPPYLUV

As above, you need to see an ostomy 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 has many kinds. If you don't 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.

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!

Artsy Lady,
I too use a hair dryer. I use it on my skin 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!
Pup

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 best for you. 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.

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 moms are 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 victories 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.