In the words of Daniel Tiger, whom BG loves to quote, “Keep trying, and you’ll get better! Try try try!” She will sing this song to me at the most frustrating moments–like when I’m fumbling trying to work the tv remote to find the cartoon she wants. Bless her heart.
Well this weekend was an exercise in futility.
I had FIVE bag blowouts.
Like as in, my colostomy bag leaked/fell off and I had to clean up a literal pile of sh*t.
I was doing SO well for the first 10 days post-op, until Friday, when I started to have sharp pains on the right side of my stoma. The pains would come and go, and I found they were worse when I had any sort of compression on the bag. So I tried to wear slightly less restrictive underwear (which I tuck the bag into–these are not ostomy-specific undies, just high-waisted Wacoal briefs I bought at Dillard’s last week). On Friday I saw my home health nurse but didn’t change my bag until after she left. Lo and behold, I found my skin was pulling away from my stoma on the right side where I was having the sharp pains. I was freaked out because:
- There was “output” (aka poop) in the crevice and I thought it could be infected.
- I had no idea how to address it–there are literally thousands of different products and appliances and I have a bathroom full of samples but needed to google what they are even for and how/when to apply them. So I’m all up-in-arms because I was woefully unprepared for this when I decided to change my bag. FML.
An ostomate wants to be prepared to change their bag. You want to have all your products that you might need within arms reach, otherwise if you have to jump up and search for things with your bag off and your stoma decides to “output” then you have a mess and it becomes a stressful situation.
I tore through my boxes of samples and found some seals–these things are supposed to help you get a good seal around your stoma and prevent leaks. My thought was that I could use the seal to cover up the open wound/crevice on my right side of my stoma, to keep it clean and hopefully make it stop hurting. So I nervously molded the seal and placed a new bag on, and it seemed to do the trick. The next day we got up and collectively took BG to her Little Gym class, where I mostly sat while Mr. MLACS participated with BG. Then we decided to go to a pumpkin patch about a 1.5 hours drive from where we live. We all got ready and I was pleased that I had managed to coordinate our outfits in a fall theme of blue jeans and shades of gray and navy blue–hoping to get a cute family picture. We get inthe car and 5 minutes down the road…
I feel my bag fall off and a warmth in my pants…
So we pulled over into an empty parking lot and I proceeded to clean up the mess. Poo everywhere. Luckily I came prepared–baby wipes, hand sanitizer, ostomy supplies (new bag, scissors, adhesive remover wipes, barrier wipes, gauze), fresh change of clothes and a ziploc bag to put my soiled clothes in.
It probably took me 20 minutes fumbling around in the drivers seat, but I got myself cleaned up and the bag changed. Then exhaled a long sigh of relief. It happens to everyone at some point, and at least I was prepared–I almost walked out of the house without that extra change of clothes and the ziploc bag, but my guardian angel must have been looking out for me.
We went to the pumpkin patch and had an absolutely wonderful time! There were pumpkins galore and lots of fun activities for kids. The air was crisp and the sound of childrens laughter echoed off every tree and hay bale and corn stalk under a clear blue sky. Perfection.
Then we got back to the car and I noticed my bag…was starting to come away from my skin…and I had no more bags and no more clothes, and a 1.5 hour drive home.
I had read that some ostomates would use medical tape or duct tape to hold their bags on in a pinch. And here in the South there is a Dollar General store like every few miles, even on the country roads. So I held my bag on until we reached a DG store and send Mr. MLACS inside to fetch ALL the tape. And chocolate. Because post-op my body craves a lot of chocolate, especially in emergencies.
I quickly duct taped the perimeter of my bag and said a silent prayer that it would hold another 45 minutes until we arrived home, and stuffed my face with a couple Ghiardhelli chocolate squares as I squeeled the tires out of the parking lot.
Just before we reached the house, I felt the bag coming unglued and reached my hand under my seatbelt to try to hold it on a couple more minutes until we reached the house. Then I hobbled inside the house, shouting for Mr. MLACS to bring me a trash bag and a pack of wipes. It was another ridiculous mess. By the time I was done cleaning it up I was thoroughly exhausted and my nerves were shot. My peri-stomal skin was also thoroughly irritated from all the bag changing. Someone brought us dinner, which was absolutely delicious, and we started to watch a Harry Potter movie (in honor of Halloween) and I think I fell asleep on the couch about 5 minutes in.
Then I woke up at 4am, with ANOTHER f*ing bag leak.
F*CK. F*CK. F*CK.
It wasn’t too bad but I had used a different bag/flange and the adhesive made my already irritated skin red and raw, so I had to try to address that. I googled and decided to dry it with a hair dryer and put some stoma powder on it. The first bag wouldn’t stick at all, so I had to cut another one. But finally, I got a bag on.
I was exhausted and laid around all morning, but since Mr. MLACS cannot drive for 6 months since he had his defibrillator/pacemaker placed, I amthe designated “errand runner”. And we needed some stuff from walmart–namely a warm undershirt and tights for BG to wear under her minnie mouse halloween costume at soccer practice that afternoon. So I rallied and schlepped myself to walmart. Got BG’s stuff and a few groceries. Tossed in a bag of peanut butter M&M’s for myself. Got back to the car and…
Bag leak #4 was in effect.
This time, I didn’t freak out. I sat quietly in the drivers seat and ate my peanut butter M&M’s.
Got home and it was chaos because we needed to get ready to leave for BG’s soccer practice. Mr. MLACS got BG ready while I addressed my bag–this leak wasn’t too messy so it didn’t take me long to clean myself up. We went to practice and I took lots of pictures while Mr. MLACS participated with BG–I love soccer so I usually do it with her but not that day, and to be fair 12 days post-op is a bit soon even on a good day. Then we came home and again someone brought us dinner (so lovely being everyone’s favorite charity case as of recently–I certainly won’t refuse a home cooked meal). And again I collapsed on the couch, exhausted and frustrated.
Woke up on Monday morning to…
Bag leak #5!
This was a couple hours prior to embarking on a 1.5 hour drive to see my Colorectal Surgeon and Ostomy Nurse. My skin was still raw and I knew they would have me remove the bag again, so I didn’t try anything fancy, just slapped on a one-piece drainable bag.
We got to the surgeon’s office and my blood pressure–which has been low since surgery–was like 140/80. Clearly, I was stressed out. I asked the surgeon’s nurse if he would “fix it” (meaning sew the skin back to my stoma on the right side) and I was surprised when she said “No, probably not”. Like…what? So he would just leave me with this hole that is causing me leaks and potential infection? WTF?
The Ostomy Nurse came in and explained that the body will “heal its self” and she has seen the skin pull away from the entire stoma and nothing done to repair it. Apparently, this is not uncommon and is actually expected in someone like me because my skin is thinned and my ability to heal weakened from the long-term high-dose Prednisone I’ve been taking since January. I was disappointed because I wanted my stome *fixed*.
Instead the Ostomy Nurse took a look at my peristomal skin and decided to use an anti-fungal powder in the red areas. Then she chose to fill in the crevice between my skin and stoma with a bit of stoma powder, followed by “caulking” around my stoma with paste, prior to applying a new type of bag–the Coloplast sensura mio flex two-piece drainable bag/base. She used Hollister Adapt stoma powder and paste, and Cavillon 3M barrier/adhesive spray.
I spoke to my surgeon and told him things had gone well up until these bag blowouts, which really makes me wonder if I’m cut out to be an ostomate or if I ought to consider the j-pouch. It is stressful to have peri-stomal skin issues and to live in fear of bag blowouts, on top of the other adjustments of life with a bag. The surgeon said it will get easier. I hope he’s right.
So far, I’ve gone 24 hours without a bag blowout since the Ostomy Nurse fixed me up yesterday.
I’m hoping to have a somewhat relaxing day at home with BG and Mr. MLACS, doing a bit of cleaning and I want to bake a banana cake with cream cheese frosting. Then we’ll trick-or-treat this evening.
And Mr. MLACS returns to work tomorrow. I’m not ready for him to go back, mostly because I just like having him around and also because I’m scared of him going back to work and being stressed out and something happening again–he collapsed at work, if you recall. He was working 12+ hour days and he wouldn’t tell them “No”. He has said he will advocate for himself and insist on shorter hours and will not stray from doctors orders. I’m still freaked out.
But you know you gotta “Keep trying and you’ll get beeeetterrrr! Try! Try! Try!”