New To Ostomy

Sparrow5,

Welcome to the forum. I am sorry you are having this issue. There should be others along pretty soon to let you know what they do.

Drink grape juice. Stay away from thickening foods....peanut butter....potatoes....rice...Increase your liquid intake to at least 64 ounces. Go on a low residue diet and incorporate more soups into your menu. (But it sounds like you are trying this already) If there was something you use to eat that would cause you to have more liquid stools try to incorporate that into your diet. (For me it was a tomatoe based soup broth or potatoe soup made with evaporated milk.....) If there was something that took you longer to digest and/or caused thicker stools avoid that also. Another thing that worked for me.....one can of coke or Pepsi a day...and eating well cooked zuchinni. I just dice them, cook them til they are mushy and fold them into my omelet. (Avoid the cheese though cause that stops you up)

Finally.....you can try putting baby oil in your bag...or a lubricating oil and see if that helps. It doesn't help me with the pancaking but it does make it a little easier to push down. I have just started wearing two piece ostomy bags so if I have to I can remove the bag and just clean it out from the top. Gross I know but there have been a few times I have had to do that cause it would not drop down...usually I keep a 16 ounce bottle of water and rinse from the bottom. (I know they tell you not to do that...but it is the only thing that works for me.) I change my bag every 36 hours...(if you change often use a good barrier wipe).

Good luck....

Clo

Thank you Clo and cmf for your responses.

I had to change the bag out this morning, it was so gunked up I couldn't clean it out at all. It's the medication I'm taking thats messing me up. I've pretty much tried everything, fruits, soups... Etc. I'm going to try and just drink protein drinks today along with lots of water and my 1 dose of miralax and see how I do. Not feeling too great today and I don't much feel like eating anyways so today is a good day to just drink.

I was suppose to start my first treatments of radiation and chemo today, I live south of Atlanta, and we are having a deluge of rain and my appointments were canceled because of Irma. Hopefully tomorrow will be better and I'll get my treatments in

There are lubricating deodorants thst will not only help with the smell but help ease the movement of the output to the bottom of the bag. Though as Clo mentioned, baby oil works and is probably cheaper, too.

Have you tried a squirt bottle of water? I actually use a mixture of bag cleaner and water in a squirt bottle when the output gets too thick. As I'm sitting on the toilet, judt open the tail and with the tail facing the ceiling, allow the water to mix with the thoxk output. When it loosens it up a bit, then I empty. Note: if your output doesn't need thinning, I wouldn't do this often as it can mess with the barrier.

Best luck!

So sorry to hear about your pain and challenges associated with the tumor. I hope you're able to continue the treatment- it sounds like you've got a good team/support system. Chin up 😊

Keep experimenting! And keep asking questions (both on here and with WOCN nurses)! The learning curve here is steep and knowledge and experience will help a lot!

Best wishes!

Here I go having problems with the ostomy and everything else with it. When ever I use Hollister I seem to have problems. With the other brand I was using I had just minor problems and was able to solve it. I had to remove everything and start again I'm just glad I was home when this happened. I wasn't even aware of it until I looked at it. I noticed around the edges it was begining to bulge some but I wasn't too worried and took the ostomy off to see if it was gunked up, it wasn't too bad but I still cleaned it up, and thought I did a pretty good job until a few hours later when it opened up and the output was starting to come through -- very gross. It was pretty bad so I changedthe entire thing out. When I took it off it wasn't that bad, just where it was coming out, nothing more. The ostomy itself hadn't opened up it was where it sealed under it. Forgive me I don't remember all the names of the pieces.

None of the output was in the ostomy bag. There had been quite a bit overnight and this morning but it was easy to empty the bag. But after I ate a late lunch I had the problem. The output was yucky again, not solid like it has been and not watery either, more like the consistency of peanut butter. Like I said I love to eat and I kind of pigged out a bit last night... I didn't over eat just more than usual. I had an apple -- I sliced it up and peeled the skin off and I had a half a Swiss cheese sandwich on a white ciabatta roll and a chocolate pop tart. I did spend some time with my mom and she made me a banana smoothie with yogurt and I had a half a grilled cheese sammie on wheat.

I'm trying to be conscientious what I eat and how much. Maybe it was just a coincidence what brand I had the problems with. Dunno

Post Edited (Sparrow5) : 9/15/2017 3:30:25 PM (GMT-6)

I'm trying to have a good attitude. This is going to be the rest of my life. Before the colostomy my life was literally a living hell. I was miserable. I was afraid to go anywhere. When I did I couldn't wait to get home. While this is all new to me and quite confusing at times its not really that bad. Compared to the way my life was before the colostomy its really great.

I was living alone and I was very, very depressed, I moved back to Georgia with my family and things turned around 110%. My family has been more than supportive. I have my bad days where Im in a daze over my diagnosis, I'll wakeup at 3am and it will hit me like a ton of bricks and I have myself a good cry and ask God, why me... I get pretty low and I don't get any of it. I feel like I'm suffocating, I can't breath. Like I'm drowning. Then I wakeup the next day and go have my treatments and I KNOW I'm going to beat this thing.

My family is very supportive, I don't know what would've happened if I didn't have them... The thing is I pretty much pushed my family out of my life 5 years ago. But since I got sick I let them back in and they welcomed me back. Without them I don't think I'd have this attitude. I'm more than grateful and blessed.

Its definitely the Hollister brand. I used the last sample I had of the wafer and ostomy bag and it did the same thing as the others did. I switched to the Convatec brand and they worked perfectly. Had no problems at all. No pancaking, no gunking up and the sides opening up like Hollister had been doing. I'd get depressed since I'd put a new wafer on and ostomy bag and either the same day or the next morning I'd have to change the entire thing out. I hated wasting both the new wafer and bag. Then this morning I woke up and had no problem with the Convatec at all. no more wasted products, no more waste period.

I'm a happy camper

Oh sheesh I had a long response but I don't know what happened. Oh well it wasn't meant for me to post it.

I've never tried Coloplast but I'll look int them. This is a temp colostomy to be made permanent after my last surgery in 3 months. So this is something I'll be living with the rest if my life. Compared to the way I was living my life before the colostomy it's something I'm looking forward to.

Sparrow,

I have a Hard power port.....so it may be different... I don't have any of it exposed. They access it with a needle every 4 weeks. My friend had a port with the iv left outside the body. We both have used these big water proof bandages in the shower. The hospital gave them to us.... I only use them once every 4 weeks.... My friend had breast cancer and since her iv was left on and out she used them every other day. She still gets them thru the nurse at the hospital....at the infusion place...and with her surgeons nurse....but she ordered some from one of the major suppliers....Edgepark or Bryan? Her health insurance did help pay for them...and she had to have the order approved by her doctor.

Hang in there!!

Clo

Haven’t written in a bit... been feeling pretty bad. I just finished radiation and chemo but boy did chemo kill me. I’m on day 2 coming off chemo and I still feel awful. I know it’ll take some time to get out of my body.

I’ve had an awful time with my ostomy and chemo. Lots of problems. Miserable problems. The chemo has given me bad diarrhea and I’m taking Imodium as per my Dr but it doesn’t really help. Pretty much anything I eat hurts my stomach bad, I can be up half the night in agony and then some nights my ostomy has leaked/opened up due to too much output at once. It’s happened 3-4 times. It’s not hard to clean up it’s getting over not to make a mess from the leaking ostomy. It’s miserable at 2-3 in the morning. That’s usually when it happens. It did early this morning too.

There isn’t a lot whole lot I can do to stop it, not eat is the only thing and in the shape I’m in I’ll get sicker... there are days I barely eat and I get very weak and dizzy. Not fun at all. I hate what the chemo has done to my body but that and the radiation have shrunk the tumor down a considerable amount so it’s done it’s job.

Now I’m just suffering the after effects of the chemo and they are bad.

I’m using Covatec Ostomy with a filter, not sure if it works, sometimes it smells bad, it’s not leaking from anywhere, I check. The smell will last a while then go away. But sometimes it stays a while, it’s very embarrassing. I’m wondering if it’s the filter, is the smell coming from the filter? It happens even after I empty out the bag and there may be a little output not enough to empty. It’s pretty bad. I’m afraid to go places and be with people which is impossible to do but I do try to avoid people as much as I can because of it.

I’ve reading on another thread where some had leakage from the filter and they taped it or used somethings to cover it up. Sometimes the ostomy will balloon up a lot even without much in it, I know this is TMI but this is a fact of life for those with a colostomy... it’s not that I’m lazy and don’t want to get the air out of the bag, I was doing that up until I started to feel really, really miserable. Then I’d put it off until I had to check.

Not only did the chemo get but so did radiation, I have some pretty major burns and they hurt bad!! It’s hard to get out of bed sometimes. I have a good burn cream that works well but it’ll take some time to heal.

I have to go to the DMV tomorrow to change over my license from another state and I really don’t want to be smelling.

It’s hard enough dealing with an ostomy and now I have all this too. And on top of that my stomach is starting to hurt bad right now and I’m sure it’ll be another sleepless night.

I’m still having the pancaking and it’s awful. I’ve been changing both the wafer and ostomy sometimes every day, it’s that bad. And I end up avoiding people if I have to.

It depresses me. I’ve tried so many things to rectify this but nothing works. I am trying to eat healthy to regain my strength back and I want to be as healthy as I possibly can going into my next treatment of chemo. But the healthier I eat the more problems I have. I take an Imodium and it messes me up the other way.

I don’t know why it’s pancaking so much but it is. And I don’t know why it smells — maybe it’s the filter in the ostomy, I have these stickers that came with them and I’m trying them, hopefully it’ll solve that problem.

It’s not like I’m doing this on purpose, I’m a very clean person, I shower daily, I change the ostomy and wafer probably more than I should but with the pancaking I have. I end being a recluse, afraid to socialize. But I can’t always do that plus it’s not good to be that way. I cannot help what’s going on, I have no control over that part of my body anymore, plus the medications I’m on mess me up as well.

I’m just feeling very down. Depressed. I want to be part of things but I’m afraid to... sometimes I’m fine but most times lately iv has awful issues.