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Will I ever feel normal again

How long do you usually get out of the coloplast bags and flange Misty? With the click ones I've been getting 4 to 6 days. When I tried the sensura flex last time I had a leak around my stoma the was burning my skin after 2 days. I'm giving them another shot today with paste to hopefully seal it better. I'm thinking the last time I used it I didn't get a very good seal because my stoma was going crazy and pouring all over the place. I was rushed and maybe didn't get my skin dry enough between all the cleaning up I had to keep doing. I'm really hoping it works better this time. I do like how this system works a lot.
 

Terriernut

Moderator
I've gotten up to 7 days, but I wouldn't recommend it! Normally 4-5 days. I have a dent next to my stoma, and that causes me leaks.
 

annawato

Moderator
Staff member
Welcome to my world Amy.Trying to change while leaking and burnt skin. Last night I was just too tired to change my bag even though it'd been on for 24 hours. Well of course I woke up to a leak. Fortunately before the bed got wet but the skin is all burnt so I'm back to square one again. The skin immediately around my stoma is constantly excoriated. The stoma nurse got me some more samples of convatec durohesive so I'm going to give them a try. Don't worry everyone, I don't mean to start this conversation (my leaks) again. Just having a whinge.
Its great you get so long from yours - maybe just continue with the click ones, though I can't imagine why there would be a difference in the flange. Hopefully the paste will do the trick. Plus a well behave stoma. :)
 
Sorry I took so long to respond. I actually tend to have the oozing around edge with every appliance I've tried. Just the time in which it occurs varies all the time.
The reason I don't want to stick with the click ones is because I want something lower profile. The lock on the clicking one sticks out from my body and shows through my clothes.
I'm going to give the stoma nurse a call tomorrow and see if she has any suggestions for me. Maybe I should try a ring of some kind.
I just like the way the coloplast empty so much better then any other. Like I said they are the easiest to clean and keep clean. I also really feel most secure with there barrier. The salts one actually gave me a bit of a rash even though it claims to contain aloe vera and to be great for skin.
I'm wondering how I'd do with a one piece. I might order samples
 
I can't remember if you tried this already or not, but you might try the Coloplast Brava strip paste. It's similar to a ring. I use the Coloplast Sensura one-piece with the Brava strip paste and they work together nicely. You mold the strip around the stoma itself and then put the bag on.
 
Nope I've just been using the paste in the tube. How long do you wear the one piece for? I've read that the wear time isn't as good with one piece though I don't really understand why that is.
 
Nope I've just been using the paste in the tube. How long do you wear the one piece for? I've read that the wear time isn't as good with one piece though I don't really understand why that is.

I believe that the wafer on the two piece is bigger than the one piece. That would make it more secure.
 
Sorry I thought I posted a response to this already but looks like my tablet is eating my posts again.
I think I'm doing pretty well. On valentines day my husband and I went to a Tragically Hip concert and even went to dinner before hand! On Tuesday we will be attending another concert and will be spending the night in a hotel in the city.
It's pretty great to get out with my husband again. It's been a very long time since we've been able to do that.
I'm also able to walk my son to the bus stop again. Though since it's so cold right now I almost wouldn't mind not being able to do that :p
 

annawato

Moderator
Staff member
So funny to think you guys are all freezing your butts off whie we're all dying of heat. Although today is refreshingly raining so not too much humidity.
Glad to hear you are getting out and about.
 
So funny to think you guys are all freezing your butts off whie we're all dying of heat. Although today is refreshingly raining so not too much humidity.
Glad to hear you are getting out and about.


Haha, very funny. It is summer over there and winter over here- you know that, right? But thanks for rubbing it in. :biggrin:

Hope you're doing well!
 

annawato

Moderator
Staff member
He appreciates all the rubbing he can get. Ha!:eek:utahere:
Don't all men?

"Haha, very funny. It is summer over there and winter over here- you know that, right?"
haha, yes I do remember learning about that in about grade 2!
But honestly with the humidity we get in Feb I would enjoy a little chilliness, though not as cold as most of you get. Our winters are very similar to LA. No snow, :( , just cold sunny days. Perfect for getting things done or snuggling up inside if its grey.
 

Nyx

Moderator
Remarkably, it hasn't been that cold here this winter...the coldest it's gotten is -25C...not bad at all! lol
 

Nyx

Moderator
I can't cope when it's -5 lol same with summer can't cope when it's 25 degrees lol
Here in Alberta we get the weirdest weather fluctuations being so close to the mountains. It can be -25C in the morning and +10C in the afternoon (yay for Chinooks! NOT). I hate those days! I get a huge pressure headache. But it's also frikken' hot in the summer too...can be up to +30C some days...I don't like those either. And everyone complains, and yet none of us move anywhere else....lol
 

Nyx

Moderator
It's not that bad...I was born and raised here, so don't really know anything different. Besides, spring and fall are beautiful here :)
 
It's true the changing seasons in Canada are beautiful but I hate winter so much. I could definitely see myself going south for the winter! And after being sick awhile I don't have my usual winter weight to help keep me warm!
 

annawato

Moderator
Staff member
i actually lived in Ottawa for a year when I was 11. I can still remember trudging to school on snow shoes, freezing our butts off. But also skating along the canal which was beautiful. Fun times. :)
 

Nyx

Moderator
i actually lived in Ottawa for a year when I was 11. I can still remember trudging to school on snow shoes, freezing our butts off. But also skating along the canal which was beautiful. Fun times. :)
Skating on the canal is fantastic...especially when you stop for hot chocolate at one of the many stalls along the way :)
 

Nyx

Moderator
For sure!!! Unless you're in Alberta where everything is yellow and brown...kind of dead looking...lol Ontario in the fall is a riot of colour...brown, yellow, orange, red...just gorgeous :)
 

annawato

Moderator
Staff member
Alberta sounds like outback Australia, yellow and brown. There are some beautiful areas, but in a very different way from Canada. Of course the coast and beaches are divine and Northern Australia is tropical but inland - yellow and brown.
 

Nyx

Moderator
Alberta is in the foothills of the Rocky Mountains, so there's that going for it...I can see the mountains from my apartment window :) There are no coasts or beaches here to speak of....lol I was amazed when we came here to find that they have a naval museum here...there are no major bodies of water near here for at least 1000kms...The Pacific Ocean is about 12 hrs away by car. Ontario on the other hand is full of water...lots of lakes and rocks and trees...soooo beautiful :) I do love Canada!
 

annawato

Moderator
Staff member
Oh yes the lakes are divine. i went to Summer camp on the edge of a lake. So lovely swimming in clean freshwater and surrounded by the most beautiful trees.
Are there ski slopes near you? We have some about 8 hours car drive away but the snow in Australia is pitiful. Often very icy and moguley with terrible queues for the t-bars and lifts. Plus SO expensive. Its cheaper to fly to New Zealand which has much better snow and slopes, though I haven't been there.
 

Nyx

Moderator
When we're in Alberta, the mountains are only about an hour away in Banff..in Ontario, there are ski slopes about 10 mins away from where we live but I wouldn't consider them mountains...lol But if you've never been to real mountains, one wouldn't know the difference...lol
 

Nyx

Moderator
Oh yes the lakes are divine. i went to Summer camp on the edge of a lake. So lovely swimming in clean freshwater and surrounded by the most beautiful trees.
Are there ski slopes near you? We have some about 8 hours car drive away but the snow in Australia is pitiful. Often very icy and moguley with terrible queues for the t-bars and lifts. Plus SO expensive. Its cheaper to fly to New Zealand which has much better snow and slopes, though I haven't been there.
Where did you go to summer camp?
 
I've never been to Canada, but it's on my bucket list. And I'd like to go up the coast of Alaska - in a small boat, not one of those giant cruise ships.
 

annawato

Moderator
Staff member
When we're in Alberta, the mountains are only about an hour away in Banff..in Ontario, there are ski slopes about 10 mins away from where we live but I wouldn't consider them mountains...lol But if you've never been to real mountains, one wouldn't know the difference...lol
hah, they are probably bigger mountains than the highest in Australia!

I can't remember where the camp was - just that it was on a lake and a long bus ride from Ottawa (or so it seemed :) )

Susan you must go, its a lovely country and the people are nice too. :)
Alaska sounds like a great idea too. Maybe one day......
 
Sorry for you guys in the northern hemisphere freezing, but it is too hot here at the moment we are into day 7 of 38c and over. Was 43c here yesterday and cooled to 40c today! It's the kind of wether that leaves the poor air conditioners gasping for breath. Hopefully we will get a cool change tomorrow, can only hope!
 
Eeeeee! I'm drinking for the first time in a very long time aswell as the first time with my ostomy. I'm so nervous and excited. I really hope this goes well!
 

Terriernut

Moderator
Well Amy, how did it go? (inquiring minds...) It went fine didn't it, no blowouts, hopefully no falling down. And if you're really lucky I hope no hangover!
 
Hoping it all goes well. My husband is a really funny guy, I hadn't had a drink for years. Then miss piggy came along, and her and I had a 'festive' festive season! Well hubby decides its good to see me enjoying life and friends again, and his way to express this joy- he started calling me the alcoholic! I mean, I have only had maybe 15 nights out in the last 20 years and I'm the alcoholic!

Anyway I got distracted - again, it must be because I'm an alcoholic, but have a great time just make sure you keep hydrated and get a sleep in tomorrow!

Hmmm must go, think I need to grab a drink!(ha ha)
 
Well the drinking went just fine! I very much enjoyed myself. But of couse last night was the first time my base plate failed me and I had a leak! It was quite the scene my hubby and I in the hotel room drunkly working together to clean up with my active stoma and get a new bag on. Thank goodness he was here to help me! And it happened again at 5am! I seem to be well sealed now but I have no idea why the two gave out on me! I don't think it had anything to do with the drinking. It wasn't even liquid output that made its way under there. But anyway the good news is I noticed both before they had made there way all the way out and onto clothing or bedding.
 

annawato

Moderator
Staff member
Well no idea why the first leak occurred but the second was no doubt due to drunk applying, :) :) :)
Glad you had a good night out even with the leaks.
 
Well, Amy...look how far you've come. Read your very first post (19 pages ago!). It seems that you and your husband have made this whole stoma business work. Hooray!!!!
 
Its true I'm in a much better place then I was a few months ago. Its very nice to have a life again! I can't believe how hard and how long I resisted this surgery.
Though I still have some down days where I'm just uncomfortable. I think as far as I've come I still have far to go. I hope I will still get more used to this and find better solutions for things. I'm still trying to figure out what is the best appliance for me.
I really also have to say I don't know if I would have been able to get to where I am with out all of you guys! This site is so great for support and information. I wish everyone with IBD could know about it.
P.s. I just ordered samples of one pieces because I'm still trying to get a lower profile. Aswell as some strip paste and rings and some convex flanges to try and stop the oozing around the edge I've been having.
 
Doublepoo still having a sir down motion 1st thing every morning and before bed every night! It's my bloody abdominal sinus (old psoas abscess site) which is causing me lots of pain and problems at the min, worse luck, but my surgeon isn't overly concerned the best answer I can get from him is that if he opens me down the midline to close Dirty Harry he will investigate the sinus/ fistula. So far no imagery inc ct , MRI, dye etc can positively show it connected to anything! It has dried up and closed twice in the past 4months only to form a blister near where it healed and explode open again. It has been swabbed countless times all clear and drains a clear yellowish liquid. So mr doublepoo is at his wits end at the min and I suspect there is a bad piece of small bowel under it which needs either medical treatment or resected but what do I know. Sorry for ranting on your thread btw. Ryan.
Ryan - I've had 4 abdominal fistulas from Crohn's. Finally, they were able to find the point of origin (sigmoid colon) and did a take down of the fistula at the same time that they did a small bowel resection. No problem since and its been 9 yrs now.
 

annawato

Moderator
Staff member
Amy its all trial and error unfortunately but we will get there in the end. I'm glad you are trying one pieces. I find them pretty good although I do have to change every day but I would with a two piece anyway. Convex flanges or rings or strip paste or convatec paste should help with the oozing. I've also had a lot of success with the coloplast belt which pulls the flange tighter to my stomach so making the stoma stick out more. touchwood but I haven't had a leak for nearly two weeks - something is working.
Even if you have to change more often, and you won't necessarily have to, the one pieces are definitely lower profile. I hope they work for you.
:heart: anna
 
I use the one piece and change everyday to but I would with any I use anyway. Hope they work for you I find them really good. I feel lucky I hardly have any leaks with Barbara unless they is a fault with the bag which has happened quite a few times. I'm having probs with my rectum tho :-:)-:)-(
 
I've just got some samples of the Brava mouldable rings from Coloplast (I use their one-piece, deep convexity Alterna bags) and am finding then very successful. They sent me both the 2mm rings and the 5mm rings.
 

annawato

Moderator
Staff member
I still don't trust rings. I want to like them because they make sense as to ease of use but I just haven't had luck with them. Mind you I usually try them when I am having lots of leaks and trying everything so maybe they aren't the problem. I must try them when I have a really good run of good luck. for the moment I'm using convatec paste which I apply to the flange. I've also been heating it in hot water beforehand (as per Robbs instructions - pie guy ) and for some reason this seems to help. Don't know why but while its working I'll keep doing it.
 
I'm currently wearing the coloplast sensura click two piece with basically no paste and by some miracle it hasn't gapped or leaked and I've been wearing it for 5 days! The only thing I can think of as a reason for it working so much better is warmth. This particular bag and flange were the spare one I carry in my purse. so I think since they were all squished in my purse in a make up bag I've assembled as a quick change kit it stayed warm and softened up.
So I'm going to try warming the flange with my hair dryer to see if I can get similar results.
 
Also my nurse is talking me into trying the two piece hollister samples I have because she says most of her other patients use them and like them a lot. She says they are very low profile.
So I have lots more experimenting in my immediate future! I'm just not sure I'm going to like the emptying as much because coloplasts are just the best for that.
Oh and I'm also a little afraid the bag will pull off since it doesn't lock like the coloplast ones.
 

Terriernut

Moderator
I think you'll end up sticking to the coloplast system, they just WORK for so many folks. The Hollister is good for some folks, I myself didn't like that they seemed very thin and cheap. And they RUSTLE! Eeeew! I really didn't like the opening of the bag, when I emptied and had to roll it up again, it seemed very iffy.

But, we are all different in our likes and dislikes. That's the best part of trying everything, you really get to see what works for you as an individual!
 
And that's why it's good that we have a number of manufacturers all vying for our custom.They are going to keep on bringing in improvements, hoping to attract us away from our usual suppliers. :)
 
I use the coloplast sensura convex 1 piece. The only think I don't like is the filter. Doesn't seem to do much but get wet and stinky. I now just put the sticker over the filter as soon as I change.

I love the Eakin rings, and use the coloplast brava frame tapes they work a treat.
 

annawato

Moderator
Staff member
Yes the Coloplast brava frame tapes are great. I didn't like their strip paste though. A bit too fiddly for me - I find it easier to just squeeze the paste out of a tube. Different strokes for different folks.
 
Mcclavin, its nice to hear a success story! thankyou!
:heart: anna
Awww - thank you! Yes, putting an end to those abdominal fistulas that were draining all the time was the best thing. Like you, I've been through and am going through some Crohn's doozies. Why do you change your appliance everyday? Is it by choice? I have an ostomy too. I feel for you because its not fun changing daily. You may have said why before but I am new to this forum. I really like this opportunity to share and learn from others.:)
 
I'm just not sure how I feel about these hollister bags. There are good things like the ability to easily switch the bag. But they just don't compare with the ease of emptying and cleaning of the coloplast. I'm missing the coloplast a bit I think.
My skin is itching already too. I don't know if this means I'm having my usual seepage already or if my skin isn't loving the adheisive on these. It is nice and soft and conforms nicely to the body. The coloplast always ripples on me.
It really would be nice if we could design our own bags with all the features we like.
I received my samples of coloplast one pieces today so I'll be trying those next anyway.
And another dumb question maybe. I have some curried mince in my fridge that my mom brought over and I'm afraid to eat it becuase I'm pretty sure I read some where that we shouldn't eat curry spice. Will it hurt me? It has potatoes in it which is a good food and I eat it over white rice also a good food.
 
I'm ok with spice and curry apart from comes out more liquidy but just eat marshmallows and jelly babies and you should be fine it won't hurt you you'll be ok. Let me know how you get on
 
Spicy stuff whips right through me since I have no gallbladder on top of the ileostomy (or below it, for that matter--hahaha!), but that is the only thing I know of as far as risks..more liquid like CheerBear said.
 
About the Hollister bags and itchiness: If your itchiness is right around the stoma, then it could very well be that you are already having seepage. My stoma juice (not the actual output) melted the baseplate around the stoma really quickly with Hollister bags.
 

annawato

Moderator
Staff member
Awww - thank you! Yes, putting an end to those abdominal fistulas that were draining all the time was the best thing. Like you, I've been through and am going through some Crohn's doozies. Why do you change your appliance everyday? Is it by choice? I have an ostomy too. I feel for you because its not fun changing daily. You may have said why before but I am new to this forum. I really like this opportunity to share and learn from others.:)
My output is very liquid and there is lots of it so it tends to seep under the flange and irritates the skin or causes leakages. I've tried everything under the sun to stop this - convex, pastes, different bags etc - but nothing helps. I did get two days out of one bag but other times when I have risked going longer I just wake up in a world of poo! So I've decided its easier to change every day and save my skin, and my bed. It is a bother cos its hard to find a time when my stoma isn't active so I spend a long time catching poo in between cleaning up and applying barrier wipes, paste etc. But I'm getting pretty good at it now so its not too bad. :)

P.s. sorry to take so long to reply. I haven't been on for a couple of days and somehow missed your post before that.
 

annawato

Moderator
Staff member
2thy, what do you mean by stoma juice? I've noticed mucus around my stoma the last coupe of changes and wondered if it was being put out by the intestinal tissue of the stoma? Is this what you mean? and should I be worried by mucus - anyone?

Amy, I eat curry with no problem- I probably don't notice of it makes it more liquid since its liquid anyway. I think you should go for it.
How have you found the coloplast one piece? Its funny how we get used to a particular brand and system. I can empty and clean my welland bags with my eyes closed and half asleep at night - when I use a different brand I run into all sorts of problems and mess.
:heart: anna
 
My stoma is drippy even when nothing is coming out of it. It's very wet. I get mucus strands from the inactive side of the intestine that is strandy. It's normal.
 

annawato

Moderator
Staff member
Thanks 2thy, I never thought of this occurring but of course it makes sense. The rest of the intestine is putting out liquid and mucus so why not this bit.
 

Terriernut

Moderator
Amy, I got the 'itch' quickly with hollister as well. Sure enough it was seepage.

As for eating a bit of curry spice, this is where you try it and see what happens. We are all a bit like mad scientists with stomas. Everything is an experiment for a while. I can eat curry, etc. (I LOVE mexican food!) You just have to give it a go in moderation and see what happens.
 
Well I ate a small portion of my curry and I have live to tell the tale! I didn't notice any difference at all really! Yay for still being able to eat one of my favorite foods! On a sad note, my son brought home chocolates to sell for school and I know I can't partake it the chocolate covered almonds. :(
 
Oh and Toothy, I get that stringy mucous too. That's from having a loop ostomy I guess. Though I can't for the life of me see the second hole. I think they must be so close together they look like one. I think my stoma looks like and end. Its a pretty round little button.
Is it weird that I sort of think its cute? I mean for what it is anyway. Its attractive for a stoma I'd say!
 
I can't quite see the second hole, but I see stuff come out from time to time. The first time it happened, I thought something was wrong because there was a bunch of mucus that came out all at once. Then I figured out what it was and it was actually really cool.

I love that you have a cute stoma! :)
 

annawato

Moderator
Staff member
No its not weird to think your stoma is cute. I'm realising my last nice round stoma was cute too. This one is a bit of an ugly bastard if I do say so myself. Oh for a nice little button.
By the way, is it possible for stomas to get larger with time? I swear mine is growing. And getting uglier as a result.
 

Terriernut

Moderator
Mines an big ugly bastard, with a personality to match! He's loud and proud and tends to have the best timing for embarrassing behaviour around.

Stomas do change sizes Anna, on a periodic basis. They apparently do it all the time. Usually to cause us issues I presume, as that is what Stan does! However, if yours is growing and staying big I would be measuring it daily and check with the IBD or better Stoma nurse. Stan got and stayed larger when I was having a flare.
 

annawato

Moderator
Staff member
haha, glad I'm not the only one with an ugly bastard!

I was worried that maybe it was prolapsing, but so far its actually a benefit cos it doesn't retract as much as before. I'll keep an eye on it though. Measuring is a hassle but I guess if I strip naked and wash the bathroom afterwards.........:rof:
 
I've mentioned it on another forum, but my (loop ileostomy) stoma has definitely increased in size since having it about seven months ago (was cutting the pouch base adhesive to 38mm in hospital, increased to 50mm at present and stoma nurse this week advised a further increase to 55mm!). The stoma nurse said this was not uncommon - according to her they often get smaller but can (as in my case) get bigger.
 
Wow. Its crazy to me how much they vary in size. Mine is only 18mm. Its shrunk from 33mm when I got out of the hospital. I think it sticks out a bit more then it did originally though. I thought it was done shrinking because it was 20mm for the longest time then last week it was smaller again. I hope its done now. I liked when it was 20mm because there is a line to cut on the back of the flange. Now I have to mark it.
My stoma is like a delicate little girl with a foul mouth. Hehe. My nurse calls them all he but I correct her on mine. Its definitely a girl.
Ugh I feel like my posts always get a bit wierd. Oh well. Lol
 

annawato

Moderator
Staff member
I think all our posts are a bit weird :) but theres nothing wrong with that. I always ramble on for ages and think everyone must get sick of the length of my posts.
18mm! How lovely. My last was 32 and i thought that was small. This one is, I think, 48 * 25. So like I said, an ugly bastard.
 
Mine has been at 25 for the longest time now. I forget to measure it, but I am sure I would notice the hole was too big if it had shrunk.

My back has been giving me grief for the past few days, really sore, I'm just hoping it is not the good old psoas infection again. I have my in/outlaws visiting at the moment. Joy of joy, it is definitely not a stress free time. Anyway today my back just got too much and I had to go to bed with a heat pack. Lord knows what they think about that. Oh well it is just a fact of life for us, and the main thing is my husband and kids are great and very understanding.
 

annawato

Moderator
Staff member
Bugger what the outlaws think! You are sick, you are dealing with an awful illness, You are dealing with a difficult situation. If they can't have a bit of empathy and understanding then that is their problem not yours. As you said, your husband and children are supportive and understanding and that is all that matters!
Sorry for being so angry but I had a M-I-L who really undermined me, complaining to my husband about what I did and didn't do around the house. I swear she added to the depression and stress I suffered over the years. Looking back i think how dare she but at the time I just felt really guilty and like a bad mother and wife.
The most important thing for you and your husband and children is for you to be as healthy and happy as you can be with this illness and if that means things don't get done around the house because you need to rest then that is fine.
I love your term outlaws! :rof:
How is your back today? Is psoas psoriasis?
:heart: anna
 
Thanks Anna,
My back is still giving me hell. I'm finding a heat pack really soothing.

It's in my psoas muscle that I have had the ongoing abscess problem. It just doesn't heal. In the next week or so my butt wound will explode, leak blood and pus, and the back pain will go. It's just getting there, then the butt will not heal for ages. It's a vicious cycle.

My MIL sounds like yours. Good thing is they live in Perth and rarely bother us. When they come over she expects to be waited on hand and foot. Needless to say we are all over it!
Only here for one more week. I can survive that!
 
I just thought I'd visit my old thread here for a minute to announce that its my one year stomaversary! Happy Birthday Audrey! Oh how far we have come together this year. There have been some bumps in the road but over all I'd say my little stoma Audrey has made this a good year.
I take none of the health I've been given this year for granted. I'm so looking forward to chirstmas with my family and friends this year! Since I spent last year in the hospital recovering from my surgery.
Can't wait to eat drink and be merry!
 
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