We are celebrating lots of things around here these days. Today marks week number 3 since Zack was discharged from the hospital. Yesterday Zack was released from the surgeon, again, hopefully for the last time until 2015. After much work, Z gained 2.4 pounds and has actually tried some new fruits. Last week Zachary attended 5 full days of school – in a row! It feels like we are in the middle of a good dream, but it’s real which makes it even better.
That last paragraph was fun to write. Only happy, exciting and fun facts were allowed. Of course, we are still working hard to get our wafer to stick for more than 24 hours. This post is giving me deja vu…that’s right, we went through this same issue last time…Happily, I have learned that each new ostomy is going to require some tweaking and the products we used last time might not be the right ones this time. Sadly, I’m not that calm and objective about it at 2:30 in the morning…almost every night….since we came home…three weeks ago. Sigh.
I just keep telling myself and Zack that at least we are home and not in the hospital. We have a routine of sorts in place now. When Zack wakes up, if he needs his bag emptied, I get up and empty it and he goes back to bed. When he needs a wafer change in the middle of the night, Jim and I both get up. Middle of the night changes always involve a mess. Jim strips Z’s bed and gets the new sheets on, while I bathe Zack, attach the new wafer and snuggle him back to sleep. This works well as this process usually takes an hour. Fun, fun, fun! I often feel as if I have a newborn again as I rejoice in getting more than 4 hours of continuous sleep.
In an attempt to write helpful facts about ostomies in case anyone ever reads this looking for advice (hey, it’s my blog and my dream…no laughing), let me tell you give you a glimpse into our wafer changing routine:
1. Hollister adult wafer 14203 – I have to customize the cut as Zack’s mucus fistula is directly beside his stoma. I cut this out before doing anything else. Have I ever mentioned I’m not good with scissors? That’s a story for another day….
2. Apply stoma powder around the edge of Z’s stoma so that we have a mound of powder, but not on top of the fistula. Pat down powder.
- The stoma powder is new to us this time as Zack’s skin has been a bloody mess. Because this is the second time this area was used for a stoma, the incision is actually outside of the stoma, not under it. Stoma powder helps this area heal and I find it to be an amazing help.
3. Apply ConvaTec No Sting Barrier Film. We use two because after we apply the stoma powder in a perfect mound and apply the first skin barrier wipe all around the skin that will be covered by the wafer, Zack moves and our perfect mound disperses. I fix it and apply another wipe and strongly suggest he not move…in a super sweet, loving voice. Especially at 2:30 in the morning.
4. Peel wafer and apply stoma paste. I have forgotten this before in the middle of the night. Zack always reminds me now because he knows if I forget this vital step we are doomed…doomed, I tell you! Without the stoma paste we will not get more than 12 hours out of a wafer.
5. Apply wafer, making sure to push firmly around the stoma and then peel the rest of the backing off making sure the fabric is smooth and without any bubbles.
6. Attach Hollister bag 18193. We have only forgotten to close the bottom of the bag once. Don’t worry, you won’t make that mistake twice!
See, that doesn’t look hard! Anyone could do this! Why on earth it isn’t sticking was beyond me until yesterday when one of our dear ostomy nurses came to our rescue. We’ve been seeing them for 4 months now and each time they come up with great advice I have never read or heard before.
We have always known that Zack’s output was too watery. When he was obstructing, the doctors wanted it this way. I’ve been told that the output should be thick, like yogurt. I have yet to see that. Zack takes a 2 mg. Imodium pill in the morning with breakfast and another at night with dinner to help thicken things up. At times it appears to be working. An hour later it may be completely watery again. I have never really worried about this, because I did not see what difference it made and emptying a watery bag is so much easier than emptying a thick bag.
Yesterday the nurse told me that our main issue is the watery output. When the output is watery like that and Z lies down, it flows back to the opening in the wafer and starts eating away the stoma paste and leaks through.
I think Oprah calls these revelations Aha Moments. How simple is that? It makes perfect sense. I feel vindicated. No longer is my wafer applying ability substandard. I can blame it on the output. Victory is mine…I mean Zack’s…because Zack is the one who has to deal with the sore skin. Zack is the one who cries because he needs a new wafer. I never cry…
How to thicken it up enough, but not too much, and get it to stay the right consistency is another story. A story we will continue to work on with our GI doctor. However, I did learn a secret. Marshmallows. Marshmallows will thicken the output. I’m afraid to try this before talking to our doctor though. I know it won’t cause an obstruction, but I’m a fraidy cat and am unwilling to take any chances without talking it through with our GI first. If he gives us the ok, we are trying that trick for sure. Come on! What kid doesn’t like marshmallows?
Our nurse also told gave us a tip about removing the super goopy stoma paste. Stoma paste will usually dissolve over time, so if you can actually get the blasted wafer to stick longer than a few hours, your wafer will come off smoothly, without issues. When your wafer fails in less than 24 hours, you are left with a sticky, messy residue that leads to much frustration and many tears removing. UNLESS you know the secret…Let it dry in the air for a time and it will peel right off. Seriously?!? Why did it take 4 months for me to learn this secret. We have been having Z soak in the bath to help loosen the wafer. This has been great, but when he gets out of the tub, the stoma paste is an awful mess.
The stoma paste removal has kept us up for hours before and caused much agony. We tried the secret today and it worked! Now we know the secret. There should never be secrets in stoma world. If you have a new ostomy, I hope you learn this before we did…you are welcome.
Before I end this post, let me be clear. Things are getting better everyday. We are no longer watching Zack every single moment, waiting for something else to happen that will take us back to the hospital. Zack is back in school, our family is getting back into a routine, we actually eat at home again (Yay!), and Zack’s energy level is almost back to normal. This wafer issue is an inconvenience to be sure, but in the scheme of things, this is such a minor thing. Zack is home and healthy and our hearts are full.