What was your worst ostomy experience?
For me, it was right after I had my first colectomy. I just got discharged from the hospital and went to the pharmacy to get my meds. I got out of the car and SPLAT… my ostomy bag fell off right in the parking lot. First time out. I stood there and cried, wondering what to do, surrounded by people in a crowded parking lot.
I swear some days it's like putting out one fire after another lol
It gets a lot better the more you work with it. If you're not happy with the product you're using now, contact all the other companies, and they will send you free samples to try.
IGGIE
This is a remarkable community of 40,879 members.
You will get real advice from fellow ostomates who truly understand you - things you won't find in the books.
And it's not all about ostomy - there is friendship and relationships too.
Privacy is very important - your profile is not visible to the outside world.
past member
After I got my ostomy I found this site and got a lifetime membership. I have had so much help from the core members, things that even the wound care nurses didn't know. If you haven't been through this journey you don't know - only the people that have experienced this first hand truly understand what your going through. The support is enormously helpful getting through this. Afterwards when you start to learn how to deal with this new normal you can begin to help others. ...mtnman.
Thanks. I've finally gotten a regimen that works for me. I appreciate the encouragement, though. Once in a while, I still have those days, lol.
When I had a temporary jejunostomy stoma for 18 months, if I slept more than 1 hour, I would have a leak, and the bag often filled up by the time I had done the Velcro closure, so I had my fair share of leaks when out and about, and that was with taking truckloads of meds to slow it down! Compared to that, living with an ileostomy for 36 years has been easy.
My worst accident to date has to have been when I was still shopping around for a colostomy bag that would work for me. I'm at the dog park, with an unsecured one-piece bag that let go completely! The only good thing was my stool was solid and it just rolled right off my shoe and onto the ground! 😂 Only the dogs seemed to care! That was last summer; this year, with my two-piece setup, I have had no problems, no accidents!!!
Once you find the right setup, Bubble, that works for you, you'll get more confidence to get out there and have your life back!
My worst experience was one week after my colostomy when I got a stoma blockage. I was in the hospital with my parents, and the registrar didn't know what to do when the fleet enema they put through the ostomy started to have a good result with poop everywhere. My dad was so embarrassed, trying not to see how gross it was. The registrar was so overwhelmed that he left to get help! It was so awful; I wish I could unsee all of that.
Forgetting to fasten the bottom of the bag after a bag change is always a good one, but I would never do anything as stupid as that. 😖
That's why I suggested that when you open a new box of 10 bags, you fold the end and fasten them all right away. It takes 5 minutes, and you don't get that warm feeling running down your leg ever again.
IGGIE
I can see why you cried. My worst experiences happened when I first got my ileostomy. It was placed in a bad place and I couldn't keep a bag on. So I ended up wearing a diaper around my stomach and constantly had leaks. It was embarrassing and I rarely left the house. This lasted for over 8 months. That I had to wear a diaper around my stomach and couldn't keep a bag on for nothing. My poor stoma was only doing it's job but I ended up angry all the time at it and crying sometimes because my skin was so sore from being exposed to output all the time. And I could barely stand to take a shower because it hurt so much. I was in serious pain and on heavy pain meds because it was so sore. It was terrible.
It was pretty disheartening to have my bag leak all over my pants while I was meeting with my chemo doc for the first time, but I think the worst was actually in my own bedroom… while changing, The Producer decided it was a good time to let loose, and it got all over everything. 😞 My wife, poor woman, cleaned it all up and was amazed to discover that our bed frame actually has a port for charging our phones! The one good thing was that we had a bed cover on, so the bed itself was untouched; it just got on the frame and the floor, and you get the picture.
Great topic.
Shortly after coming home from the hospital, my discharge was getting looser but still thick enough to pancake. I was still learning and not confident with appliance changes. Pancaking forced my appliance off. I went to change it, and my stoma exploded... all over me, the bathroom, the bathroom floor, everything within a 3-foot diameter massive mess.
Then, I'm trying to clean up (dumb me, I now know to waste no time getting that thing covered). Naturally, it explodes again before I get it covered. Same disaster zone.
This time I get that thing covered pronto. I start cleaning up the bathroom. The appliance comes off. Probably my own fault.
By now, I'm a puddle of tears. I am so frustrated. I thought, "How am I ever going to live like this?" I was melting down and forgot all about covering the stoma (besides, that can't possibly be anymore in there, right? Right?)
I lay down on the bed to try to calm down. I'm all alone in the house; I needed to get my head straight. Welp, you guessed it!
On the plus side, we found out how great the incontinence pads my husband had bought were. The top sheet and a blanket (as well as the pad) needed to be washed, but the bed survived.
It was my lowest point. That day, I decided I was in charge, not my stoma, and I redoubled my efforts to learn to manage my stoma. There were more accidents while learning, but it never got to me the same again.
Of course, there is always today…. Changing in the bathroom, soaking with Domeboro, I feel like The Producer is getting busy, so I take off the soaking cloth, and damned if it didn't flow right out onto the floor/rug/toilet/me. Sometimes loose stool is a good thing, but this was too much of a good thing! I definitely used the “F” word more than 20 times as I cleaned up that mess! I'm thinking it was too much fruit, but the stuff is so good right now!!!!!
It was awful. I am so glad things are better now. And my newer stoma can wear a bag, and I can venture out of the house now.
The bed disaster was me last week. I had an issue with my stoma pushing the wafer off in the night, and thank goodness I had a pad on the bed, or it would have ruined the mattress. I had to wash everything, but that was all: the blanket, the pad, my pajamas. I was really upset. I got so mad I put my stoma in time-out. I said I am not on speaking terms with my stoma. LOL Those pads are a lifesaver.
Aw, that's awful. I had a blockage once. They put in an NG tube and left me without food for 4 days. I hated that. NG tubes are no fun. Blockages are not fun. I'm sorry you went through what you did.
That story made me smile. It rolled right off your shoe. LOL I wish my output was that solid. I have an ileostomy, though, and rarely have that kind of output.
Not familiar with that type of ostomy, but I'm high output too. 4 liters is normal. I've done 8. Yay for constantly having to keep nutrition up! I take tons of meds to where the pharmacist always questions my dose of Imodium. Right now, 4 of them 4x a day, although I've done more. Also Lomotil, simethicone… even Zofran scheduled because it's supposed to mess with your serotonin and possibly lower output. Had shots that never stopped making me sick. They even suggested I try A1c stuff like Ozempic, although after what I've seen in the news about it, glad I didn't.
You get used to the gross stuff and become unphased and unstoppable 💪🏼
I've totally fallen asleep doing a bag change. That's a rude awakening, lol.
I feel that. My stoma has given me two of the worst feelings in the world: itchy days and days where your skin burns like acid. I have to bite a towel just to clean up.
At least you have a good wife. You know you have a good partner when they help you through the gross stuff and don't make you feel bad.
Yes, I definitely had those days where you make a mess and don't even know where to start.
I have short gut syndrome, and many foods won't break down and come out of me just the way I swallowed them. But I've found that the more you eat certain foods, your body can adjust. So if you like salads but those leafy greens won't break down, have a small salad every day.