Need to talk(Ostomy advice)

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Jeff calm down...if you need to get one put in that's okay.
They know what they're doing and it will be okay.
I'm still holding your hand and I will look the other way. :wink:

You don't want your bladder to burst.
Just kidding about the burst bladder...you need to start voiding!
And if you can't do it on your own then let them help you.
 
*Silver runs the tap in the bathroom, and starts singing all the "water" songs she knows... hoping to make Jeff either pee or kinda laugh and relax a bit....* lol

On the serious side, we need to get the pee out so we don't get a bladder infection (infections start in "standing water" ie the fluid in your lungs (which is why they want you to try and cough and do deep breathing - so you don't get pneumonia), and the fluid in your kidneys/bladder.

Personally, I haven't ever really found catheters to be all that uncomfortable (and have often wished for one on long road trips with my hubby! LOL), but I do think it is a bit of a different experience for men, as there is more urethra to go through. Although, that being said, I still think it might be better than a bladder infection.

And I think LOTS of times people have problems peeing after surgery... the whole body kinda goes to "sleep", so sometimes it takes some organs a bit of time to "wake up".

In any case, Like Nancy Lee says, try and relax, and let them do what they gotta do - but ask for more pain meds first.... just in case... LOL! :)

(Oh yeah.. and thatnks for the "prep" info... will have to check with my surgeon about this when I see him next week... to me that is the most horrible part of the surgeries or tests!).

*Silver goes back to singing her "water" songs*
 
hmm i dont even remember WHEN they cathed me, i think they did it before i even woke up?

but really, the thing did not bother me at all. even when they took it out it just didnt even feel like anything.

granted i think things are a little more uncomfortable for guys....but overall my experience with it was easy peasy.

haha easy PEEsy.
hahah im so frakkin funny.

good luck!
 
Thanks guys. I started to pray and then I had to go pee really badly and I got 4 units and then I had to go again and had another 4 units. I feel like I may need to go yet again. They told me they would be right back and it's been an hour since they've been here. I still haven't had a catheter yet. I don't think I'll need one now that I'm going so much. Thanks ya'll so much and Silver you made me laugh a bit.
 
They actually had to take my catheter out to get me out of bed!!! I was soooo loving not having to "go" to the bathroom at all!!!! It's a lifestyle I could have gotten used to....*sighs* lol
 
Jeff D. said:
.... Silver you made me laugh a bit.
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YAY! Now I can go to bed happy that I made someone laugh!! LOL! :biggrin:

And WHOHOO on the peeing thing too! Although now watch, you'll have to go so much you won't get any sleep..... LOL!
 
Yeah I didn't sleep muchlast night because I was peeing so much.

Sharon, I'm in my own room so I can have my computer.

I may be able to go home today or tomorrow as I'm emptying my bag already and for lunch I'll eat something real. I'll be on low res for a little bit but it's better than liquids that I've been eating for the past three days.

Thanks everyone
 
I'm so glad that you're doing well Jeff! I hope you feel better than you did before the surgery :)
 
Did any of ya'll with a loop ileostomy have a metal s rod stuck in there. It's so weird but the changed it for me today, although I think I could have done it myself.haha I learned some tricks from the nurse as well so that's good. It's funny because the docs seem to want me out today and the nurses want me out tomorrow but I don't have a car today so I'll have to wait for tomorrow when my dad can pick my mom and I up.

Thanks guys for everything. I'm finally going to the bathroom without pain. It's quite awesome and besides my stoma I only have one hole above my belly button and that's honestly the most bothersome of the whole thing. I don't have much pain but I'm still using some morphine because I have a dull pain and I don't feel like having pain.haha

Thanks ya'll
 
Jeff D. said:
Did any of ya'll with a loop ileostomy have a metal s rod stuck in there.
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wat???

lmao i cannot even begin to figure out what that means.

btw, you have a loop ileo? just curious.

it prob would be good to change it once by yourself you know?? are you having a home care nurse come out once you get home?
just sayin, it was very helpful to do it once in the hospy with the nurse there. cuz it was scary the first time, for me at least, i was super scared to touch it and have to mess with the area.
 
Yeah, I think tomorrow I'm going to change it myself. I've got a loop ileo so they use the rod to keep things in place if you know what I mean. The rod is in the shape of an "S", if tomorrow I have to change it I'll have my mom take a picture of it. They are going to take it out tomorrow so I'm hoping I can take it home with me so I'll take a picture of that as well.

I'll ask them if they can send a homeheath nurse to help me out with it if I trouble.

Thanks
 
I am so glad to hrar you are doing well. give your body an opportunity to rest and try to walk as much as possible... it helps with the healing and to strenghten your mind.
Best wishes
acg
 
Jeff D. said:
Yeah, I think tomorrow I'm going to change it myself. I've got a loop ileo so they use the rod to keep things in place if you know what I mean. The rod is in the shape of an "S", if tomorrow I have to change it I'll have my mom take a picture of it. They are going to take it out tomorrow so I'm hoping I can take it home with me so I'll take a picture of that as well.

I'll ask them if they can send a homeheath nurse to help me out with it if I trouble.

Thanks
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ohhhhh i see, wow that is interesting! does the rod hurt at all?
yeah save it!! well at least try to.
 
Thanks acg

Kelly: it doesn't hurt at all. I'm going to try and have my mom take pictures of it tomorrow and then I'll try to save the metal piece. It's actually really flexible and the ostomy nurse had to bend it up on the sides to get the two piece on.
 
Hey Jeff, I had the rod under my loop ileostomy, it's there to hold it in place. They took it out after a few days for me. No big deal though. I'm glad you are doing well with it all and will go home soon. I had a jpouch constructed at the same time as the ileo which I don't think you did so I was in a lot more pain. But it's exciting, I hope you get relief! I'm here with 3 week's into my ileostomy/jpouch if you have any questions.
 
Yeah, I just had the ileo done. I hope you are healing well. How are you feeling Joey? I'm feeling okay right now. I tried to lift myself up a bit and that hurt pretty bad but I'm better now. Hopefully I'll go to the bathroom once more and then be good to sleep the rest of the night until I can leave around noon tomorrow. Thanks everyone for all of the support
 
I'm doing good now, my stomach muscles are still sore. Most my pain is from my back, I guess my muscles are weak. My bed in the hospital was pretty neat because it had a handle on a chain that I used to pull my self up with to move. It sounds like you didn't have to have a catheter, you're lucky, I hated mine. Taking it out was insane, it's like the size of a soda straw and in you about 5". Hows the stoma treating you? It's not so bad is it. I just met with my WOC nurse today and am trying a different appliance company, which is suppose to be really good for ileostomies. I will have to share my opinion when I spend more time with it.
 
The stoma isn't too bad. I just can't wait until I heal up from it and then I'll be all ready to go. Let me know what you think about the different appliance company. Which company are you trying? I'm using a clear hollister right now.
 
Jeff, when I woke up from the surgery I had a clear bag. After that they had me using Hollister one piece drainable clip style. I realized this worked great as long as I layed in bed all the time. Once I was home and was feeling better I was able to move around a lot more. Since then those bags would only last one day, it was annoying. The seal opening would "turtle-neck" around my stoma and over time a leak would propagate to my incision. I attribute this to my stoma being on/near body lines and folds due to bending over and moving. I then started experimenting with barrier rings which helped a little and finally tried a two-piece new image appliance from hollister with a belt and made it four days. I think the belt is the important factor to ensure a lasting seal. When I say my WOC nurse today she was swearing by using Convatec one-piece pre-sized appliances with a belt. So far it is working great, the seal is much better. She says I can be active and still change it every 4-5 days, some people can even go 7. So we'll see how it goes.
 
hows reni settling in jeff? i cant believe you are going home so soon. over ere they keep you in for 10 days or so.
welcome to our world jeff.
 
Thanks guys. Reni is doing well. My abs have finally realized they have a hole in them so I've been using pan med today. I'm going home today so that's good.
 
reni may well be ok, but how about you?
take it easy on your food, reni needs time to adjust, she is still very new.
 
Thanks guys. I'm doing okay. I'm in more pain today than yesterday and they said I'll have another day like this. I just need to make sure I'm taking pain med regularly. Yesterday I rarely pushed the morphine button and today I'm pressing it much more. I'm still doing pretty well though. I just can't wait until my tummy heals up and the stiches come out. I've been walking around a bit and I've done pretty much everything myself. I empty my own pouch and I pee in the bucket thing. I just can't wait until I can go home so I can empty out the pouch in the toilet bowl instead of in the container. It's just too hard with that thing. I really don't know what I'm writing anymore, everytime I'm on the computer I get woozy.haha I hope things are making sense. THanks for all the support guys.
 
hey sorry if you already said this, but fdo you have a midline incision?

if you do is it dressed/covered or no?

if its not, i would thouroughly wash and protect it. after my surg they convinced me that the staples would be ok exposed and i severely regret that. i feel like my infected incision may have prevented. who knows, but maybe.

no matter what they say or how "fine" it is, do what makes u feel comfortable
 
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Hey Jeff. Glad it seems to be going well for you so far. I hope that your surgery helps you as much as mine helped me.
 
Thanks guys,

Kelly: I don't have a midline cut. I just have a little tiny incision above my belly button.

Yesterday really was not a good day. I felt pretty aweful all day. My stomach hurt and I was constantly gassy. I hope I feel better today. Yesterday I had the whole 1.5 hour car ride to go home without any pain med and that was murder so when I got home I took to percocet and was out for pretty much the entire day yesterday.

A few questions:

How do I take a shower with this thing?

How do I straighten my back as it hurts like heck from being bent over?

I thought I had others but if I do I'll add them later. Going back to sleep right now.
 
When I shower I just be careful not to aim the water right on it. Besides that, shower as usual :) And as for your back, I would just try stretching (why are you bent over btw?)

Glad you're on the road to recovery...the gassiness will pass (no pun intended) and your pain will decrease. Take care!
 
Oops...forgot to add to not have the water too hot. I know with me, Oscar gets right puffy when he gets too hot (like when I come out of the hot tub). It was scary at first...I thought I broke him! But he was fine..just freaky to see!! After a couple of hours he shrinks back to normal size.

I also wanted to add that if you're having problems removing your flange when you need to change it, have a bath and change it afterwards. Softening the glue in the bath always works for me, and I've never had any skin problems.
 
i dont take my pouch off when i have a shower. i chane the pouch after a shower as it seems to take ages to dry.
be gentle with reni as she will bleed easily.
 
Hey Jeff, I have a lot of back pain for the first couple weeks, at times it was worse than the surgery pain. I just delt with it, I used the percocet, stretched, and walked as much as I can. It will go away over time. I still get back pain if I stand up too long. Oh, get a cane, it helps out a lot.

As far a showers, I did sponge bathes for a couple weeks. I took my first shower last week and taped a plastic bag over everything since i was worried about the seal. At the time it didn't matter since the seal would only last a day anyway. Now that I have the convatec pouches, I just put tape around the flange to protect the edge and shower like normal. Like they said above, don't blast water on it and you should be good.
 
Thanks guys for all of the help. I've been wanting to respond all day but I haven't felt well enough. I've been super gassy which has kept me from wanting to eat or drink anything so I took an anti-nausea medicine and it is seeming to work right now. I hope I can drink more soon. What did ya'll drink during this gassy stage?

Thanks guys for everything
 
I just laughed during the gassy stage. There's nothing you can do about it...certainly can't stop it....My stepkids thought it was hilarious...and I definitely felt better letting it all out so to speak...lol I'm afraid you just have to wait it out. And I always drank water (boring, I know)..nothing carbonated or fruity (fruit makes me fart).
 
So you didn't have painful gas? My gas is very painful. Since taking the anti-nausea medicine it's felt much better. I'm feeling better for the moment and I've been able to eat much more so now I'll try and add some water.
 
Mine wasn't painful...just very frequent. I sometimes feel a pressure behind my stoma so I know it's coming..but I wouldn't call it painful as much as uncomfortable. But then again, I was still in the hospital at the point that you're at right now...I was still on the good drugs and not much caring about anything!!
 
This morning I went into the ER because of extreme pain and I started vomiting bile. It turns out I had a wicked case of gas and dehydration. This morning was not fun at all. I went through 3 bags of water without really needing to pee until I got home. I'm feeling much better now though and hopefully I'll able to keep drinking the correct amount of fluid that I need. I was able to eat a piece of toast and drink water without much pain so that's a lot of progress.

For the first time I changed my own appliance and I think that's just going to take some time to figure out how to change it quickly. I'm nervous that I didn't make the best seal so we'll see how it goes.

Today I've been walking much more and I'm eating and drinking so hopefully I'll be on the up and up. Also, I've been sitting down on my couch rather than lying on my bed. I think the bed killed me yesterday so hopefully I can start feeling better now.
 
I find if it gets to the point of being almost painful, I just massage my stomach and coax the gas out. I've even pressed really hard on my stomach to get it to come out. It's pretty cool once you find the 'sweet spot' to press on (Mine's on the opposite side of my stomach on the other side of my scar). I can press that any time and gas will come out...it's kind of bizarre...lol
 
Do you guys know of a garbage can that will keep the odor in instead of letting it all seep out? What do you guys do with your dirty appliances?

Thanks guys

Jeff
 
I just use the blue garbage bags that come with my bags. I just use a twist tie and toss them in the garbage after cleaning them out as best as I can. Mind you, I only change my flange once a week, and I've timed it so that it's the night before garbage day here. You can also put a teaspoon of mouthwash in whatever kind of bag you throw the appliance out in...that should help if it's really bad. Also, putting the used appliance in a ziplock bag should help too (that's what I carry in my purse just in case I need to change in public).
 
yep you get hollister right? every box of pouches comes with a packet of brown trash bags. im pretty sure they have some kind of deoderizer on them, cuz you can kinda feel it on your hands after you touch the bags.
i double bag mine AS im changing it, take off old appy, put in bag, tie up, stick in 2nd bag, then use that same bag for the rest of the traash as i change my appy and the tie that and throw it away. if the trash sits there to long it does start to smell no matter what, so if it was just trash day then i will take out side to the trash can.

ah i remember the backache from stooping. it feels good to lie flat on your bed or whatever and shove a pillow or something in the small of your back. kinda stretches.

in the car i also always put something soft across my abdo and THEN put the seat belt over. sometimes even a pilllow was too firm, like a really squishy stuffed animal helped a lot.

showering, ok well for me, showering WITH my appy on still does not work out too well. it comprimises the seal quite a bit still. not sure if that is cuz mof the PG or what. but a the moment, i DO shower with the appy on, but always change my appy right after. so shower always means appy change to follow. and i do this like evry other day or so. that was you dont have to worry about your stoma being nekked in the shower (for me it hurts cuz of the PG i guess it is not a prob normally tho) and you dont have to worry how messed up the appy gets.
then i just wash my tummy at the sink with gauze and soap and such.
 
Aww, Jeff, I am such a jerk for not checking on your thread sooner! I'm glad your surgery went so well and it sounds like you're recovering well (minus the quick ER trip).

All of you ostomy guys really inspire me! You guys are amazing :) Keep healing, Jeff. I'll be sure to follow along on your recovery better ;)
 
HI Jeff,
Sorry to hear about the ER trip.
I am now 6 weeks post op, so I can tell you there is a light at the end of the tunnel. But, those first few weeks are tough.


I also use the little garbage bags that come with the Hollister pouches for disposal. Pretty handy, but I imagine any dollar store small garbage bag will do. I just tie a knot in the bag.

My local stoma nurse recommended the Hollister Adapt barrier ring and I like it. I think it will make the difference for me. It makes covering the skin around the stoma easy. Before, I never could quite cut the Hollister flange opening to the correct size. I think I always had a tiny bit of skin not covered causing just a little irritation. Now I just enlarge the opening in the ring to fit snugly around my stoma and apply directly to my skin, then I apply the flange over the ring.

Also, using a water bottle to clean out my pouch has made a huge difference for me. I used to spend alot of time wiping the pouch tail with toilet paper and it was hard to get it clean. Now by pouring water in the pouch, it cleans up fast and easy, the pouch gets almost completely empty, and my hands stay much cleaner.
 
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wow - you've done it! well done Jeff!! i apologise for not clicking into this thread before now, i just didn't realise your surgery time was so soon (for some reason i thought it was June) duh... sorry buddy.

anyway, i'm delighted to hear it went smoothly and that you're home & eating/peeing/pooing etc :D

sorry to read of the gas & pain you've had - i think it's quite normal to have these post surgical hiccups. you went home quite soon after surgery, it seems, and i think a lot of my initial pain & such happened when i was still on the ward. i remember limping up and down the ward all night trying to disperse gas pain. one thing that does help me when i get trapped gas is hot water - just sipping it slowly seems to really move it along so it can pass out through the stoma, or come up the other way. and massaging my tummy helps too.

re disposing of the used appliances, i also use the fragranced bags that come with the appliances, or you can buy nappy (diaper) sacks at any pharmacist, which do the job just as well. make sure the appliance has been emptied before you dispose of it, and the odour shouldn't be a problem then.

showering - i think in all the years i've had a stoma, i've only showered a couple of time with no appliance on. i don't like the feeling of hot water actually on the stoma, so if it needs changing, i do it straight after the shower/bath. if it's not due for a change, i just dry it as much as i can with a towel, then give it a quick blast on low heat with the hairdryer.

at the moment, i'm getting around 5 days wear from each appliance, that's with showering every day - which is amazing (thanks to my stoma nurses), as previously with the old ones i was changing it up to 3 times a day!

keep an eye on your fluid intake now that you have an ileostomy - we are more prone to dehydration simply because we lose more fluid than before - our colons have the main job of taking fluid back into the body from feces, but now you have a stoma that fluid just comes out.

keep up the good work, Jeff - sounds like you're doing great! :D
 
i was gonna say all what ding said. drink lots more than a "normal" person as we cant absorb the liquard.

jeff, reading between the lines, you sound very down and depressed. are you sure your ok?
 
Hope things are good today Jeff...

I just wanted to update on my water bottle cleaning method. I might have to rethink that. I just had my 2nd leak at the bottom of where the New Image pouch connects to the ring on the pouch. Humm, could be from the weight of the water and movement when cleaning. I figured once might be a fluke or bad pouch, but twice must be what I am doing.
 
Thanks guys. I went to the ER again last night until this morning for pain and a little dehydration. I think I'm finally getting the hang of this or at least better than I was before. Reni has done a great job at healing and is much smaller now, yesterday Reni was really enlarged and now he's quite small. I think a part of my intestine just didn't want to move or something, like it was paralyzed because I haven't eaten much and yesterday I had barely any output. I still didn't eat much but when I got back from the ER, fell asleep, and woke up my bag was full of gas and liquid. I then started to eat breakfast and I shot out more gas and filled my bag 1/3 of the way and I've felt much better since.

I'm taking percocet and some zofran for my nausea. I'm really having a much better day.

I just got a free shipment from Hollister that contains some of the adapt barrier rings but I'm not sure how to use them. I'll have to read about that.

Sharon, I don't think I'm depressed. I've just been in a lot of pain the past few days and I'm more annoyed than anything else. I can't go on the internet as much because it's giving me headaches and I can't type well due to the pain meds so I'm trying to write without letting my OCD tendencies to write things correctly bother me and it's more difficult than I thought. I hate typos so every message I write seems to take two to three times longer than usual.

Thanks for all of the support guys. You all are awesome!
 
This may be a dumb question but how do I place my bag so that the contents go down to the end instead of just pooling around Reni. I put the bag under my underwear and pants but the elastic band cuts the bag into two parts so I always have to adjust so the stool will actually go down. Do ya'll have any advice? My underwear feels really uncomfortable if I put it anywhere else and it would be like I have a constant wedgie. Do you think that getting one of those sport "bag holders" that would hold the bag at an angle across my stomach would be better although I would have to empty it more often?

Also, the flange part right near my belly button never wants to lay down flat by itself so I always have to put the tape there. Is that because my belly button is keeping it from laying flat? Is it because I'm too skinny and having the surgical site right over the BB caused a slight indentation in the area? I could use some help in this area. Thanks everyone
 
Sorry for posting so much in a row, I honestly don't understand why I'm still awake but I'm hungry. I'm really hungry. I'm really nervous about eating so late at night though as I don't want to have a blow up while I'm sleeping. I can't wait for tomorrow. Maybe I'll try something like pancakes as something different, I just won't put too much syrup on them. I'm hungry. Well off to sip on my water bottle and hopefully some sleep. Thanks guys for listening to my wanders and rants.
 
hi Jeff :)

if you're hungry - have something little if it's really late at night, like a yoghurt or a milkshake (that's if you're ok with diary), or maybe a biscuit - cookie - and a warm drink. it's a good sign that you're hungry!

regarding the bag and flange... if all your underwear waistbands cut the bag in half, i'd suggest having the bag lie outside of your underwear.. you don't want to be forever fiddling and worrying about this. the flange problem - i have that too, but on the other side where there's a hollow just inside of my hip bone. i also have to put a strip of tape there every time i change bags. also, i put another strip along the top edge so that there is a smooth line under my clothing.

maybe in time you'll feel like trying different appliances, and you might find one that has a softer more flexible flange and this could help that problem.

headaches are common after anaesthesia (even many days later), and are also a typical symptom of dehydration - hopefully they'll fade very soon.
 
Jeff D. said:
This may be a dumb question but how do I place my bag so that the contents go down to the end instead of just pooling around Reni. I put the bag under my underwear and pants but the elastic band cuts the bag into two parts so I always have to adjust so the stool will actually go down. Do ya'll have any advice? My underwear feels really uncomfortable if I put it anywhere else and it would be like I have a constant wedgie. Do you think that getting one of those sport "bag holders" that would hold the bag at an angle across my stomach would be better although I would have to empty it more often?
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hey what i do is tuck JUST the clip into the waist band of whatever pants im wearing. out of undies, inside pants/shorts whatever.
make sense?
doing so pulls the bottom of the bag up so its out of the way and easily fits under a shirt, and still leaves enough space for the poo to go down instead of pooling. effectively by doing this you are shortening the bag so instead of the "end" being where it is clipped, the end is the fold.
hah i hope that makes sense
 
I have to echo what ding and kello said...I just put my bag over my underwear so it doesn't cut it in half. In regards to the stealth belt (I commented about this somewhere else) I didn't like it as gravity works best for me in regards to getting the poo to the bottom of the bag. Might be different with an ileostomy though...you'd have to try it. I still use mine if I'm going out and doing something active like walking or exercising...it keeps the bag close to your body so it's not flopping all over the place. I have also used it for sleeping, but have another cover that I prefer for that.

Glad to see that you're hungry, that's a good sign!! Like ding said, I'd just eat something small at night to tide you over till breakfast :)
 
Thanks guys for all the advice. I ended up eating some goldfish last night. I have some more good news. Today I had a thick sludge like thing come out of my bag. I also put my bag on the outside of my underwear and it is feeling much better now.

Thanks Nyx for the advice on the stealthbelt. I want something similar to that but that won't cost $75. I don't mind the belt going across my stomach as I would really like it to be out of the way but it just seems to cost way too much. I just can't seem to find something reasonably priced that would help keep my bag out of the way. It's kind of annoying me because I don't like constantly having the bag against my leg and I would also like some support so I don't feel like I have a weight on my side at all times.

Also, are there any forums where people have tried all the different belts that I could talk about.

Thanks
 
Hey all, I've got something creative and funny I did to solve my clothing issues. My stoma is just below and slightly to the right of my belly button, which means my bealtline for my pants and underwear lay right on my stoma. I usually wear boxer-briefs and I took two of them and sewed them together. I cut the legs off of one and stacked it on top of the other one. I made high rise underwear which I wear over the bag. Since I can't find pants that don't cut into the stoma I use suspenders under my shirt to pull the pants above it. It works pretty well. I did however find mens low rise briefs that will not interfere with the bottom of the flange on my Convatec apps, and I wear the pouch over them. I still use suspenders on my pants. I think girls have more options than guys. Hope this helps a little, I'm still experimenting. I'm gonna look at jeans tonight, I'm thinking a little looser in the waste since the beltline cuts in and I cant hike them up, and then use suspenders. We'll see.
 
I'm not sure if I quite understand what you mean but I think I get the idea. It sound really cool but I'm not sure if I could do that.

I was wondering what companies you guys like to order from. I'm going to try and get some free samples of 2 piece pouches if possible. I keep getting free 1 piece systems but none of the companies send out 2 piece systems.

Thanks for the advice. Maybe I'll have to wear suspenders now, I never thought I'd have to wear them.haha
 
I got free samples of two piece appliances from Holliser, Coloplast, and Convatec. Myself, I like the Coloplast as it's cheaper and I find the flanges stay on much longer even with regular showers and going in the hottub. I got them to send me bags with clips, the mini bags, and the bags with velcro. It was fantastic..I still have some that I haven't gotten around to trying yet...lol And they all follow up with you to find out how you're doing with their appliances and to see if you need anything else. Also, you may be able to go to a drug store for a demo day...I know my Shoppers Drug Mart here had an ostomy day where the various companies came and showed their wares and answered questions. That was really cool.
 
Hi Jeff! I'm so sorry I haven't written in a while. Just still dealing with my own stuff. I have been keeping up with your thread though and I have a few suggestions.

First of all, when I first got my ostomy done, my clothes didn't fit right at all. It was nothing but sweats for me for weeks. Now I can wear anything I want, including skinny jeans. One of the reasons for this is that my stomachs swelling has gone down. The other is the belts that I found. I HATED the feeling of having the bag hanging down onto my leg too. These belts totally helped with that.

Go to ostomyshop.com. They have wraps, which I have tried and are AWSOME. They also have boxers, which I have not tried, but they look pretty cool. I just ordered some of the giant granny panties but haven't gotten them in yet (if any of you girls want to know how they are, let me know). The wraps are all about 30 bucks, but you can re-wear them again and again. They have been wonderful for me. There is also a video on on the site to show you how to do it. I can't say enough good things about these wraps.

My bags last about two days. I bathe on day one and then change the bag after. Day two, I try not to get them too wet in the bath (I tape mine up while I am in the bath and don't let the water in the tub get too full), and then I start all over the next day.

I have only really had a problem with the filters leaking, not the bags themselves. The bags WILL NOT last for me more than two days though. I don't know why.

I order from Hollister but I haven't gotten any disposable bags. I use a trash can with a lid, but I also put each bag in a zip lock and use adapt lubricating deodorant from Hollister to neutralize smell. You just put it in your bag in the morning, and before you change your bag. It works really well.

I am going to look through your posts again and see if there is anything else I can help with. I will write again about my experience soon (on my own thread) but I simply do not have the energy for it right now. I am doing well, and I start back at work again tomorrow (gulp!). I hope things continue to go well for you. I still think of my ostomy as the best thing I have ever done, although I admit it hasn't always been smooth sailing.

Best wishes and don't push yourself too hard. Drinking water is key. I was in the ER for dehydration too. No fun, but you get used to how much you have to drink. Wish I had more advice, but I am still learning too!
 
Thanks guys for the advice.

Jer's I will be going on that site right now.

Another thing I don't understand is when do I know I need to change a bag or a flange? I'm kind of confused about that. Thanks everyone
 
Thanks Jer's Girl!! I just ordered some sexy thongs and the wrap...I'll post how I like them too :)

Jeff...I just change my flange once a week. Every Monday. How long did your ET Nurse say you could get away with leaving it on? Mine originally told me that it should last 5 -7 days. It varies from person to person. And I only change my bags probably once a month or so. I just toss them out when they start looking ratty.
 
Thanks Cindy, it seems after a day that my bag is getting kind worn feeling. One thing I've noticed is that I have to burp my bag alot and by doing so it causes a little of the stool to seep into the crack so now I have a smelly appliance. I'm going to add a button to my next pouch but it takes 24 hours for it to seal well to use. Have any of ya'll tried the new hollister bags with covered charcoal that can get wet? They look very interesting
 
I forgot to mention that I run a q-tip around the inside of the flange to catch any wayward poo...lol I use bags with charcoal vents, but they don't always work if you have alot of gas...so I still wind up burping the bag on occasion.
 
Yay Nyx! I bought one sexy thong too! We will have to compare notes when they come in!

Jeff- boys are even more lucky. The boxers look like totally normal boxers to me. :)
 
Wow, that makes sense! I think I'm going to have to go and write all these suggestions down and give them to the ostomy nurses at Vanderbuilt so they can tell people these things that we need to know.

I was told not to use the charcoal bags because the charcoal when wet becomes inneffective. I heard hollister makes a charcoal bag with a covering but I don't want to try them unless they work.
 
So I'm having trouble sleeping. I have an idea to make a belt that would actually work for me but I don't have the tools, supplies, or knowledge on how to build it. I guess I could make a crude version but I want something I know will stand up to how I am wanting to live. I would like to make a belt/guard where they are integrated together.

For the belt, I'd like it to hold the pouch at an angle towards my midline. That way it's not hanging straight down but it's not obstructed like other belts so it can hold more stool. I'd like to make it like a stealthbelt but oppostite where it gets larger in the center.

For the guard things get high tech and tricky. I want to make something that lasts and is also comfortable in case it get's hit. For this I'd like to make carbon fiber rods in a semi-circle attached to rubber pads. The carbon will take the stress and will not break under severe impact as long as it's made correctly. The rubber pads will be used to take the stress of the rods and displace it so the stress it placed over more of the stomach than in just one little area.

I don't like the cup designs many have used as I feel it could hurt the area around the stoma. My design would be light weight and effective and because the carbon would only be used in rods it shouldn't cost too much. I wouldn't use plastic because it could bend and break more easily. I would use steel or aluminum but that could be heavy or cumbersome. My design would have the guard protrude only a half an inch from the belt so it gives a little flex but is not to obtrusive. I wished I had drawing skills and could draw what I'm thinking. Could ya'll give me your thoughts on the design. It would also have a zipper for easy access to the pouch for emptying.
 
Funny thing, I just farted from my stoma and it was so big, it was like an explosion of goodness coming out of my stomach. It literally launched me up off of my bed. I can't sleep right now so I thought I would share a funny story. I'm excited I don't know why. I feel uber hyper, like I want to run around the world or something. I feel like a new man. I just can't wait until my incision heals and my stitches fall out and stuff so I can straighten my back up again. Then I'll be on my way to being a 21 year old.haha I have to relive the past 7 years now to make up for all the lost time. All the food I missed out on as well as all the fun and games. Anyways, just wanted to share the little story.
 
lol i had a mental image of your stomie gas propelling you up off the bed - haha!

ok.. lots of thoughts here for you.. firstly, when i put a new appliance on i never stick it so it hangs straight down, i place it at an angle so that the drainable end is pointing more or less between my legs, not dead centre, kind right groin direction. this helps with lots of aspects, emptying, clothing, not digging in too much when i move etc.. also some of the bags once you've closed the drainable end can be folded up into the protective soft cover, so that makes it even more comfortable.

i've learned not to burp the bag expect when i'm actually in the bathroom, for the very reason you say, Jeff... you can never be sure it's just going to be air coming out.

when to change.. well i guess this is such a variable thing.. i go by how it feels, how secure it is, if anything's coming upstuck or leaking... and most importantly, if you get any soreness or itching - change it asap!! the stuff that comes out of your stoma is very acidic, and will cause soreness quite quickly.. if left, that can become a vicious circle as, sometimes the soreness gets so bad that the skin starts to seep, then it's difficult to get the bag to adhere, so it leaks... etc...

re your design.. sounds good... it may be that you don't need to go to that length though - i suspect there might already be something on the market that ticks all your boxes. maybe talk to your stoma nurse and tell her your issues - she might be able to suggest something. stoma nurses tend to know all the stuff that's available even if they don't stock everything.

also, as mentioned, there are open days for stoma manufacturers.. i'm actually attending one this month - see if you can find out where the nearest next one is being held.

i'm delighted to hear how hopeful and upbeat you are - and rightly so! this surgery does give us a 2nd chance at life :)
 
jeff please dont tell me you ate real goldfish?

i am so glad reni is settling in ok.

have you spent time watching her? isnt it fasinating?
 
I know when i had mine i had to wake up sometimes in the middle of the night to release the gas because it had built up so much the bag looked like it was going to pop. didn't have much as far as stool goes just a lot of gas, i'd just open it and squeeze the gas out then close it back up and go back to bed.
 
DO NOT BE TOO LAZY TO SIT UP AND BURP YOUR POUCH.
I HIGHLY RECCOMEND SITTING UP.

it is worth the effort.
trust me.

edit:: haha jeff i remember the first few times stomie farted a LOT, when i was finally getting the air out from surgery, it was seriously shocking! it would make me jump!
 
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lol...I agree with the sitting up to burp thing...you never know if only air's gonna come out of there!!! Only had a problem once when I had d and didn't know it...thought it was just gas...turns out, not so much....lol
 
as i said on page 1, its like looking after a new born baby, the stomas need looking after, care and burping.

i have a charcoal filter so dont have to empty the gas out of my pouch, this works fine until it gets wet, then its useless.
 
Thanks guys. Well right now I pretty much have to sit up anyways to sleep as it is uncomfortable to lay flat.

Oh wow, I must have been sleepy when typing this post as I didn't even finish a sentence. I can't rememember what I was going to say anymore. Today has been a weird day because I'm really tired today. I passed out for a few hours. Thanks guys for all the help
 
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Alright I have a small but bad problem. I wreak! I mean I don't smell like poop but my ostomy smells. It's like the flange has an aweful smell. I haven't been taking showers regularly but even the day I took a shower my flange and pouch smelled. Does anyone have any advice? Can I clean the flange and pouch without taking off the glue? Also a portion of the flange near my bellybutton has come off. It just won't stick in that area, is there something I can do to help it stick?

Thanks guys
 
I am using the Hollister pouch with the filter and so far it works very well for me. I rarely have to burp the bag now. Either I don't have much gas anymore or the filter is working. With other brands (even with filter), I would wake up to the goodyear blimp. Now my bag is full in the morning, but not with gas. It lets me sleep much longer.

I am going to try a 3 days schedule of changing the flange. I just changed this morning after 3 days and my skin looked good. The time before I went 4 days and noticed leakage under my Adapt barrier ring. I read on another forum that they start breaking down so that is why I'll try the schedule, instead of waiting for it to itch, etc.

For the pouches, if my insurance lets me order 20 per month, I'll change every other day. I just placed my 2nd order with Edgepark. I used Byram the first time, but Edgepark lets you do everything online - and I like that. I think the pouches could last the same 3 days as the flange, but changing them sooner gives a nice clean feeling! I ordered 10 flanges and pouches, M9 drops, Adapt lubricant, Adapt rings, and Smith & Nephew adhesive remover. The adhesive remover was back ordered, so today I just used alcohol wipes to remove the adhesive. I used 4 and it worked pretty well (no stinging either - phew) The Adapt rings leave a fair bit of adhesive residue. Oh yeah - I do it all in the shower 1st thing in the morning. Remove the old flange (put in plastic bag), wash and remove some adhesive from the ostomy area, soap it up, shave the area carefully, then rinse very well to get off any soap residue. Then I dry it off very well and wait maybe 10 min to apply the new flange. My ostomy is completely
quiet in the morning before eating.

If these pouches work well (no leaks like my trial batch), I'll order 10 more to start my every other day routine. I did notice the expiration date of my trial flanges was 2 years sooner than my new stuff. I wonder if the trial pouches (from my ostomy nurse) were just old???

I'm 7 weeks post surgery, finally feeling good and adapting to this new routine pretty well. Today I met a friend for lunch and my pouch was heavy by the end of lunch. Very noticable to me as I walked back to my car. It would have been nice to have somthing supporting it - I just can't decide what wrap type product to order.

When I play with my 2 year old boy, I wish I had the Ostomy armor product, or Sport gard. I just would not want to wear it full time! And don't want to run and put somthing like that on when he wants to play rough.
 
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Hey Joe, have you looked at what I wrote about an idea for a guard/belt device. What do you think? It should be on this page or on the last one.

I really need help with this smell right now. I just don't know how to get rid of it. Is it okay to get the appliance wet. I haven't been showering much because of my incision site, it isn't stapled or anything, just glued so I'm worried about getting water on the glue and the paper on top of that. Thanks

Jeff
 
Yes, I just re-read it. Unless you're really handy with design and carbon fiber, I don't see how it could be built. And I don't think I would want to wear something hard all the time, only when involved in sport or rough play with the kids.

These are the only two guard type devices I have read about:
http://www.ostomyarmor.com/
http://www.sto-med.com/sportgard.htm

Have you seen these?

What smell are you talking about? Something wafting from your pouch? Or post surgery BO? I have been showering and bathing with my Hollister and having no problem at all. This thing sticks like crazy. But call your surgeon and ask if you can shower. My staples were removed on my last day in the hospital and then they put on the Steri strips. The doc told me to shower after a day at home. My local surgeon says baths are good for my incisions. So I've been taking 2 or 3 short hot baths a day. Very relaxing.
 
I bathe and shower with my appliance on. Are you still using the one piece Jeff? If so, I'd just pour a bit of mouthwash in the opening at the bottom...that should help with the smell. If you're using the 2 piece, just take the bag off, and wash reni with some mild soap and water. I also run a q-tip around the inside of the flange lip to keep it clean. I also clean my bags with soap every time I change them.

I don't know what to advise about the bellybutton issue...I don't have that problem, my stoma's way off to the left so my flange doesn't come near my bellybutton. Hopefully someone else on here will have some advice for you :)
 
Joe:The rods would be easily take out and slid back in as they would be held in place by a slot. It would be more like the stealthbelt than the other two. Those both don't seem as comfortable as I'm hoping mine will be. I'm going to be getting together with a friend to draw my design out and see what it looks like. I'll try to post it on here when I'm done.

I think the smell is post surgery BO but I'm afraid to wash the area. I don't want to wet the surgical strips that are holding me together. It's really an aweful smell though. Would alcohol work to clean and get rid of the smell?

Cindy: I haven't had to wear a one piece yet. They've always given me a two piece system. I probably need to clean it out more but I haven't cleaned it out too much yet. I'm still getting used to emptying the bag.haha
 
I don't know why I thought you had a one piece system. Well, that's easier then! Like I said, just wash like normal. Reni will bleed a bit, but don't worry about it, he'll always bleed. In regards to alcohol, my nurse told me never to use it because it irritates and dries out the skin.

Do you have homecare coming to look after your incision? Or do you go and get it checked and the dressings changed? Either way, ask them to put the waterproof bandaging over top. I wouldn't submerge it in water, but showering was fine when I still had dressings to deal with. My dressings were also changed every day, so that helped with smell as well. I didn't have the glue (just staples) so don't know how well it holds up under water. I would think that it would be fine to wash it gently with a soft cloth and some mild soap. Ask your nurse, though, s/he'd know best :)
 
I don't have an ostomy nurse or dressings. All I have are the steristrips. Since I had it done laparoscopically I didn't need any staples or anything. Ugh, this smell is just so aweful. They gave me some plastic sheets that have adhesive on them so I can cover my wound but they only gave me three sheets. I guess I won't use the alcohol wipes.

Thanks for all the help
 
P.S. I use the tegaderm over my flange so I can go in the hot tub more often. They also used it on my on my incision to keep it dry (I had open surgery so had a 10" incision to deal with).
 
Jeff D. said:
I don't have an ostomy nurse or dressings. All I have are the steristrips. Since I had it done laparoscopically I didn't need any staples or anything. Ugh, this smell is just so aweful. They gave me some plastic sheets that have adhesive on them so I can cover my wound but they only gave me three sheets. I guess I won't use the alcohol wipes.

Thanks for all the help
Click to expand...

when is the last time you got a good look at all of your wounds/incisions?

if its been a few days then check up on them. a bad smell *could* indicate something wrong.

sometimes tho, my poo doesnt smell like poo. it just smells bad. if that makes sense. i think it depends on what you eat and what mood your bowels are in that day.
 
Thanks guys.

Cindy: I think I may have to try that.

Kelly: I'm going to check the stiches around my stoma tomorrow when I clean that area and change flanges. The other incision is covered and I can't look at it but I can see the dried blood which is supposed to be there, I guess. That's what the docs and nurses said when I left the hospital and it looked the same there as it does now. I think it may be post op BO as it smells like a mix of sweat and chemicals. I haven't washed my abdomen and that's where it's coming from. When I even touch my stomach my hands get the smell on them so I'm just confused I guess. I think I'll just try to wash it well tomorrow and see how that goes.

Thanks everyone, I'll let ya'll know how it goes. If I'm not oozing anything maybe I'll be able to take a picture of my stoma and incision site.
 
On a different note, you know the feeling of pre-op when you had to fart and you could feel your butt cheeks quiver from the fart moments later. I find I do miss that. Now I feel like I have to fart and my stoma decides to explode noxious gas into my bag.haha
 
Do you get the pressure behind your stoma too? I get that...and the more the pressure, the louder the explosion...lol It's kind of amusing to me at this point...
 
Yeah, I get the pressure and everything then...BAM and I look over to my mom and we just start laughing. I can't wait until I start school again and I get these sounds and everyone will be waiting for smell but they won't get that for a few minutes later when I release the valve.haha I can purposefully torcher people now and it's hilarious. My mom said she may make me go outside to release the valve as it smells so badly right now but then again I have been eating mostly nilla wafers haha.
 
Sorry to break the news to you, but it's always smelly...well, mine is anyway...lol I like burping my bag at night and doing a dutch oven on my bf....lmao (is that TMI??)
 
I had to do a regular post reply rather than a quick reply so I could use an emoticon.haha
But:

Me: :roflanim:
Your boyfriend: :stinks: and then :puke_r:

Yeah, I'm okay with it stinking. I just remember cookies and sweets always gave me the worst smelling poops so I assumed I'd have better smelling poop if I ate other things. Maybe if I eat some flowers I'll have flower smelling poop. My bathroom smells like roses...yeah right.haha
 
The way I see it, farts are farts....we're lucky though that we don't have to share them with the world, unless we want to :)
 
Haha, yep. Today I walked burped it and kept going as my mom just entered "the space" and she almost gagged at the smell.haha I forgot to add the deoderizer drops that time as well.lol
 
i was gonna say what kello said, the smell maybe because the wound is getting infected. is the area weeping and wet? is there any liquard and if so what colour is it?
 
hey Jeff, I am glad to hear that you are making progress. Yeah, check the wounds for the BO smell just to be on the safe side.
best
 
Hi there Jeff - I've been an avid reader of your thread and I'm glad you're feeling better! I wanted to chip in my advice on the wound smell - I've only had surgery for endometriosis, but it was done laparoscopically and was left with 4 incisions held together by only steristips. I was scared to get them wet for the longest time and definitely developed a nice ode-de-incision myself. Once unbearable, I bit the bullet and showered getting them fully wet. I don't know how big your incisions are, but the steritrips are amazing at holding their ground - even when wet! Of course I'd be careful and ask advice from your doc, but from my experience the strips can get fully wet and even soapy. I was told just to do everything normally and they will fall off approx. the time the incisions are able to hold together without them. Good luck!
 
Thanks, it's getting pretty unbearable rightnow so maybe I will just get it wet and see what happens. The worst thing is I'll have to go the ER for some steristrips. I'll try it out tomorrow as I just ate to I'll be having stool coming out for the rest of the night. Thanks for the advice.
 
Today was a strange day. I didn't get much output for some reason and I was really nervous I had an obstruction, lucky that's not the case. I emptied my bag for the first time today at around 10 and since then my stomach has been highly active. It's been so active that I actually had a real BM today from my butt. I didn't think the doc cleared me all up and today I started singing and while I sang I got a real urge to use the bathroom and the toilet just filled up. Now there was a bunch of blood but just after a week and my butt stricture must have loosened because the stool was actually quite thick. I was amazed. Now little Reni is just so active. Now I just need to figure out a way to fall asleep.haha
 
Need help look at these:

IMG_1998.jpg


IMG_2002.jpg
 

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