Me and my fake stoma

[Misty-Eyed]

So after seeing my stoma nurse in a more official capacity (she looks very different with her uniform on!) I got a few test sitings and lots of bags to go with my fake stoma to try before my op in October.

So I've been trying it out for a few days at a time for the past couple of weeks. I even wore it to kettlebell training tonight! So far I've not found it too bad. It's not been in the way as much as I thought it would, although I'm fully aware that I'll be more conscious of it when it's real and has output coming out of it!

Anyway, in my adventures I have thought of some questions.

1) After a shower do you change your bag or dry it off? I'm not liking this damp feeling of the bag next to my already dry skin!

2) When emptying your bag, is it embarrassing if there are people in the stools next to you? With the noise of the bag, emptying and the smell?

3) Does your skin still get itchy under the flange?

4) Do you like the bigger bags or the smaller bags or a mixture of both. If it's a mixture.. when do you prefer the larger or smaller?

That's all the questions for now. It's starting to sound like a questionnaire!

 

[Nyx]

I'll attempt to answer your questions:

1. I change my bag when it gets wet. I reuse my bags, so I just clean out the old one and slap on a clean one. I hate the feeling of wet bag on my skin too.

2. I don't have a problem with changing my bag in public. But, then again, I use the liners so I just whip the dirty one out and put a clean one in. Takes less than 30 seconds - no time for the smell to permeate...lol

3. My skin has never gotten itchy under the flange.

4. I use smaller bags, but I don't have a lot of output so it's not an issue for me. But, if had to choose, I'd use smaller ones for swimming or if I'm wearing something form fitting. The larger ones are good if you know that you won't be able to get to change your bag for a while (like at work or school).

Hope this has been helpful!

 

[DavidA]

So after seeing my stoma nurse in a more official capacity (she looks very different with her uniform on!) I got a few test sitings and lots of bags to go with my fake stoma to try before my op in October.

So I've been trying it out for a few days at a time for the past couple of weeks. I even wore it to kettlebell training tonight! So far I've not found it too bad. It's not been in the way as much as I thought it would, although I'm fully aware that I'll be more conscious of it when it's real and has output coming out of it!

Anyway, in my adventures I have thought of some questions.

1) After a shower do you change your bag or dry it off? I'm not liking this damp feeling of the bag next to my already dry skin!

2) When emptying your bag, is it embarrassing if there are people in the stools next to you? With the noise of the bag, emptying and the smell?

3) Does your skin still get itchy under the flange?

4) Do you like the bigger bags or the smaller bags or a mixture of both. If it's a mixture.. when do you prefer the larger or smaller?

That's all the questions for now. It's starting to sound like a questionnaire!

1) The moisture and heat in the shower ruins the seal so you should change within about 12 hrs. I can take a shower in the morning and change that evening and it's not a big deal.

2) No more embarrassing than having explosive diarrhea in the stall :blush: Just keep in mind the others are people you don't know and will probably never see again.

3) Yes. Furthermore, at some point your skin will break down and be irritated and painful. It will become red and weepy and you'll have a hard time getting a good seal. This is normal for ostomies but it'll get better after finding the right appliance/accessory/treatment combo. (Ostomy powder and sting free skin prep treat the irritation pretty well).

4) It depends how much output you have. I'd never use a smaller bag but to each his/her own.

A Final Thought:
To get the true experience try filling the bag with something to simulate what it's like full, especially at night. Sleeping comfortably is the most difficult part of having an ostomy in my experience and keep in mind that the output is acidic and will digest your skin if you haven't got a proper seal. You'll also periodically have blowouts at night, waking up in a pool of feces so get a mattress cover that's waterproof. There's also a good chance that your stoma will be an irregular shape and you'll have to cut the bags to fit.
I'm sorry if this scares you but I found this all out as a nasty surprise while living with one. My surgery was sudden and unexpected and the doctors and nurses did nothing but tell me how wonderful everything would be, essentially claiming it was better than having a colon, then I found out they were lying their a$$es off just so I wouldn't be nervous. It really did me a disservice since all the typical problems associated with an ostomy came as a surprise. I want you to know what the bad stuff is because I was never prepared for it and it would've been a lot easier for me if someone had told me the brutal truth about some things. On the other hand, I can drink hard liquor without a problem now, I've done some international travel with the ostomy without incident (except having to show it to airport security in Moscow, but they were professional about it) and most importantly, I've been in remission from Crohn's for several years now. So there is a good side!

 

[CDDad]

Hi Michelle,

1) After a shower I towel dry my flange and bag. That does the trick for me, but I don't wear my bag against my skin. I use Hollister by the way.

2) Yes, I don't like emptying with someone in the next stall. I have an Ileo and use water to rinse out my bag, so there is alot of water pouring going on. I think that would sound pretty strange to someone in the next stall. If I can't avoid it, a well timed flush hides any noise I am making so it's been no big deal. On another note, I don't know about you women, but sometimes when I'm in a public bathroom, other guys are in there tooting away with no shame.

3) My skin does not get itchy under the flange normally. When it happens, that is a sign that my wafer is breaking down and needs a change very soon.

4) I use the same model bag every day - the standard Hollister drainable 12 inch. I have some smaller 9 inch non-drainable bags, but I don't use them.

 

[frustrated and anxious]

hi misty eyed. i am by no means an expert on this. i have had my stoma for 8 weeks now but i will share what i have learned.
1. you can shower with the pouch on or off. if you choose to shower with the pouch off, the wafer or flange stays in place (with a 2 piece system) and you replace the pouch after the shower. if you choose to shower with the pouch on that is fine too. i only do this when i have time to properly dry everything.
2. the amount of output and smell is different if you have a colostomy or and ileostomy. however, i have been surprisingly comfortably emptying in public. the kind that i use does not make noise as far as the bag is concerned. and i usually put some toilet paper into the toilet to allow the sound to be muffled.there are deodorizers that you can put in the pouch when u apply it that help with the smell also. but usually a quick flush helps!
3. my skin def does itch under the wafer. but usually that means that i need to change it
4. as far as bag size, it depends on what im doing. smaller bags are okay for swimming or exercising. bigger bags are good for me at night or if i know the ouput will be increased. i am still learning on all of this

i dont know if this help, i have lots of questions still, good luck and def ask questions

 

[Gav]

Hi Michelle,

Impressed with your preparation going on there!

Here are what I can answer form my own experience:-

1. After a shower I do not change, unless it is a work morning and I am putting on a fresh bag anyway. In that case I will. Other than that I don't. I picked up a tip that using a blow dryer for about 30 secs on the bag would be useful and it is. The bag is then dry next to my skin and I have never had any problems with the shower damaging my seal. I have been in the sea and is swimming pools and gone for days without needing to change after that. Some people use the filter stickers (they are usually supplied with the bags in their boxes) to cover the filter when in water. That can help, but for me I have not needed these.

2. I don't have too big an issue with emptying in public. I put a few drops of peppermint oil in the bottom of the bag in the morning. This lasts all day and when I empty the smell is much nicer, although in a chap's toilet probably a bit odd! The only issues I have with the sound is opening the velcro seals at the bottom of my bag. I always think people will hear that and think I'm doing drugs or something!! Other than that, my bag doesn't seem to make much noise on emptying. The rustle co-efficent is low!

3. Never had itchy skin under the flange with the bags I use. I guess I am lucky with the brand I use.

4. I use the maxi size for the bags I use (Coloplast Assura), but when I have used other bags I have leaned towards the "mid" sizes bags. It depends on body size and output levels. With coloplast I need the maxi size bags, I found these very useful when I used to commute to and from London as the days could be very long and on the way home toilets were not always easy to get to and not overly clean.

You'll find everyone has differing experiences, and I am sure they will all help you with learning what works best for you. I've had my stoma 4 years now, and I find myself learning new things all the time.

Gav :hug::hug:

 

[Terriernut]

1) After a shower do you change your bag or dry it off? I'm not liking this damp feeling of the bag next to my already dry skin.

I always change my bag after a shower. Eeeew to a wet bag for me!

2) When emptying your bag, is it embarrassing if there are people in the stools next to you? With the noise of the bag, emptying and the smell?

The bag doesnt make any noise for me. Frankly I make ALOT less noise than I used to!!! :shifty-t: As for the smell, I have to admit you may need to whip out your handy spray to deoderize. At which point you will wonder why on earth EVERYONE doesnt do that!!!!

3) Does your skin still get itchy under the flange?

Yes...then you know its time for a change! Dont forget cavilon spray and convetec or whatever powder. Take very good care of your skin!! Biggest problem for us ostomates is skin problems.

4) Do you like the bigger bags or the smaller bags or a mixture of both. If it's a mixture.. when do you prefer the larger or smaller?

I use a mixture, as I showed you at my house the other night. Small for day, larger for night.
As you are playing around with fake bags, you might want to put some very warm water in there so you can get the true feeling of it. Or blow it up with air! (thats what we call 'wood'!!)

 

[Misty-Eyed]

Thank you SO much for your answers guys. It's most helpful!

What is the 'normal' consistency of output from an ileostomy supposed to be like? You can compare it to food products if it makes it easier. I know it won't be 'normal' at first but I was just curious.

Also, does the output seem to come out over a short period of time then not much, or slowly over a period of time or does it depend on when you've eaten?

 

[CDDad]

I eat alot of fiber - fruit, vegtables, etc, so my normal output is on the thicker side. Think applesauce mixed with peanut butter. But I've also had liquid output like chocolate milk. Liquid output is very easy to drain, thicker output not so much.

But liquid output is more of a hassle as it sloshes around, and eaiser to have an accident when emptying as it comes out fast.

I would say my output is steady throughout the day. I don't have much in the morning until about 10am so that is a nice break! But a few hours after a meal is when it really gets into action. I do snack alot at work (fruit!), so that keeps things moving too.

 

[Nyx]

I eat alot of fiber - fruit, vegtables, etc, so my normal output is on the thicker side. Think applesauce mixed with peanut butter.

When I get that, I call it pudding poo....lol

 

[DavidA]

Thank you SO much for your answers guys. It's most helpful!

What is the 'normal' consistency of output from an ileostomy supposed to be like? You can compare it to food products if it makes it easier. I know it won't be 'normal' at first but I was just curious.

Also, does the output seem to come out over a short period of time then not much, or slowly over a period of time or does it depend on when you've eaten?

I'd say it should be like toothpaste, but it varies. I had a lot of my ileum removed so mine is more liquid. But, depending on diet it varies. My stoma is quiet in mornings and evenings then seems like it lets it all out while I'm sleeping. Over the course of the day, it lets out a little bit at a time, usually more in the afternoon. Imodium will be your best friend! I take 2-4 pills a day and that helps quite a bit. I'm a sucker for salt and vinegar potato chips and they seem to slow it down as well. The output really is a mystery sometimes. I've had it slow down and thicken by eating chili before!
One last thing: DON'T EAT MUSHROOMS!!!!! They'll swell and block you off. Also, get lots of free samples from the various ostomy companies. You can start getting them now. I like the Coloplast Sensura one piece with the Hollister barrier rings. I do have to frame the outside edges of the wafer with Micropore tape though. That's been the only combo I've tried that doesn't make my skin break out.

 

[ameslouise]

If it's not too late to chime in, I'm ditto to Joe on numbers 1, 3 & 4. But when it comes to emptying my bag, I just let 'er rip. Seriously, it's no grosser than what other people do in the stalls. Everyone poops but not everyone has an *******!! But I got over being embarrassed by pooping a long, long time ago!

As for consistency, I'm an oatmeal/grits kinda consistency gal on a normal day. Certain foods/drinks make it thicker or thinner. But most of the time, I can count on oatmeal.

Good luck!!! - Amy

 

[Misty-Eyed]

CDDad - It'll be so nice if I'm allowed to eat fruit and veg in decent quantities again eventually! Don't you get a lot of gas because of that though?

David - Yeah, my stoma nurse said that crisps are very good at thickening up the output. I already know about mushrooms!! My old GI said that she's taken out whole mushrooms from people during colonoscopies before. Mushrooms and my strictures DO NOT mix. I already have quite a range of bags though. In fact I have bags covering my room already. Can you tell I want to be prepared? lol

Amy - Thank you! It only really bothers me at work at it's a large office and the ladies are so quiet and I know I'm going to bump into these people often!

 

[LOSTnut]

Now that I work I found it easier to keep my output on the more fluid side. I can feel it filling up and probably have to empty more than the average person, but it is easier to empty and in my opinion cleaner when you don't have to push out the stool.
So far, I haven't tried to flush the bag at work but I use flushable wet wipes to clean the tail end inside to prevent output on the outside which can cause smell that at least you yourself might notice.

On showering, I used CDDads advice and just shower with the bag on, then dry the wafer really good and fold up the bag with a binder clip to do the rest of my morning toilet. By the time I am done lotioning and putting make up on the bag is usually dry. I use the ConvaTec 2-piece moldable, which only has one bag size.
Again, if the bag is too long I just fold the tail end over and secure it with a binder clip, which also gives me additional security that the velcro will not fail me.

At work we have single bathrooms with a extremely noisy fan, so no problem on the sounds ...and since it is used by men too I ain't bothered if there is a smell, which for me usually doesn't happen much during the day. Probably another advantage of keeping the output more fluid.

Skin breakdown -- yes, only when output hits the skin and for bad cases I used the skin barriers to increase healing time. ConvaTec has a really thin one that works very well. Hollister's is a little thicker and I don't care for it too much.

And, oh lordy, chips will make my output pancake and most of the time cause a blow-out, thankfully so far mostly at night .....

Sheesh, what a long post. Hope I didn't bore you ...

Good luck,girl and be glad that you are able to "play" before it all happens

 

[CDDad]

I'm not sure if fruit and veggies cause me more gas than anything else. I don't have too bad a problem with gas, probably the same as others. My filtered Hollister bag works well - but only if I change it every day before bed.

The other day I felt like going 2 days on a bag , but it was blowing up during the night and bugging me. (I get 30 bags a month but some pesky months have 31 days)

 

[Misty-Eyed]

Heike - Thank you! And no, you didn't bore me. The longer, the better in my opinion! I've been using Dansac one and two piece to practice with so the flange is all rubbery. I took the bag off after the shower and it was still damp the next day! Weird about the crisps causing the pancaking. Is it just the texture that causes it to do that?

Carrie - Us English are very reserved about that kind of stuff. Well, everything in general really. But yeah, I guess I need to learn just not to care. You would of thought I would of got used to that by now, huh?

CDDad - How annoying! You would of thought they would of thought about the extra day. At least you have a couple left over from February, I guess! Here all prescriptions are free when you have a permanent ileostomy which includes bags so I guess I don't have to worry about running out of supplies as I can just order more when I run out.

It seems like there are loads of variables when it comes to choosing what brand you like best..!

 

[FruitLoop]

Hi - I had an Ileostomy for 12 months and i got some pouch covers on prescription from my supplier (Bullens). They did a shower one which went over the bag when i went in the shower so it wasnt wet - saved me changing after every shower.

Do you have a delivery company ? Bullens are amazing - they would ring and take my order every month. There are lots of different companies out there to try and you can switch as many times as you wish ?

Also get samples from all the big companies - Convatec are great for sending stuff out and will suggest good flange / bag options.

If you search for ostomy covers there are companies that make different ones - i had lacy ones and animal print ones! I also got a **** tube which i would wear around my belly during sex to cover the belly area.

I remember having an Indian and eating lime pickle then a few hours later sitting watching whole chillis emerge from Kermit (cause he sounded like a frog!! - do you hae a name for your yet?)

Good luck x

 

[Misty-Eyed]

Thanks Fruitloop! Very useful information!

The stoma nurse did say about a delivery company. It sounds easier and they cut the flange for you.. so might as well use one! Plus she said they get supplies out to you within 2 days or something if you're abroad and lose your suitcase!

I don't have a stoma yet. I've just been trying out a fake one. I get my real one in October I should take a pic of the fake one to see how realistic it is.

 

[LOSTnut]

Ha -- yes, I picture sure would be nice.

I am not sure why it pancakes when I eat chips, probably I just eat too many because I do it so rarely. Usually, I eat the Kettle ones because they are so crisp and so gooooooood.

 

[FruitLoop]

I don't have a stoma yet. I've just been trying out a fake one. I get my real one in October I should take a pic of the fake one to see how realistic it is.

You still need a name for it :wink:

I didnt set out to "name" mine - it was emergency surgery. But the first few weeks after he was "born" he made weird gribbit type noises so i named him Kermit the Frog which was shortened to "kermee" - i then developed a fistula which in keeping with the muppet theme i called "fozzie" - the 2nd fistula was drained via surgery and was just a slit so he was called "slit-eye" - the whole collection was then referred to as the muppets.

Saying to hubby and kids - "im just going to change Kermee" sounded better somehow than "stoma" iyswim ?

I then found on various forums that a lot of people name them :biggrin:

Regarding the pre-cutting of flanges your stoma will change shape and size for the first few months so it might be easier to cut them yourself as your stoma nurse should draw an outline for you which you can then do yourself maybe once a month to check the size (you get all the bits to do that with your starter pack).

You can get sachets and powders that go into the bag to absorb odours and wind - trio-diamonds are great little things. I accessorized with every single "extra" that there was out there - gel, powder, flange extenders etc - i was a product whore :biggrin:

http://www.ostomycoversbylinda.co.uk/html/about.html

This is where i got some covers from although like i say Bullens do do them on prescription.

You can also get special knickers on prescription - ask your stoma nurse - they are big apple catchers BUT they are useful for creating a smoother silouette or if you need a bit more security.

Bullens also do disposable bed pads which i would cut up into strips and sort of stuff around my waist if i was likely to leak at night (excess food and drink would be culprits). They also do fitted bed sheets but tbh they are a bit hot. I used to get the disposable bed pad, rip the plastic backing off and lay the absorbant bit under my bed sheet - then if there was an accident it wasnt on the mattress ? Sounds grim i know but there is going to be a bed explosion at some point so if you are prepared?

Sorry if that sounds really negative :shifty:

 

[Carrie630]

Hey FruitLoop! You can get reusable bedpads. They're quilted fabric and you just throw them in the wash, but you can also just stick a towel under the sheet if the texture won't be annoying to you. I need to get more, because I had to throw mine out, but I get thick mattress covers over a mattress pad which is another layer of protection. I guess I have my own issues wrt messing the bed!

 

[Misty-Eyed]

I shall take one when I get home, Heike. Misty wants me to take it with me to show her it when I go visit her tonight! The problem with the fake one is that the sticky stuff on the flange made the base of the fake stoma all gross. Luckily they gave me two! My mum told me off for leaving it on the kitchen window sil lol. Kettle chips are certainly the best. YUM!

Fruitloop - I've decided I'm going to name mine after the op when I see what kind of personality it has. I hope it's not going to be bad looking. I feel a bit like a mum whose is worried her baby will be ugly once she gives birth to it lol.

My stoma nurse said she's going to teach me how to measure the stoma twice a week as it's calming down a bit. I know it'll take a while but it'll be handy to get them pre cut in the long run afterwards. I'm a product whore anyway so I'm looking forward to trying out different stuff.

I tend to wear baggish tops anyway as I'm self concious when my stomach bloats up. My stoma nurse said that M&S do some good light control knickers that hold it in well. I'm more of a tiny knicker girl though (although I draw the line at thongs!) and I really could care less if it's noticeable on a day to day basis. (Special occasions are different).

Thanks for the link though. The bed pads seem good though. Are they like the ones they get you to lay on at the hospital because I quite like those. They could be easy to take with me when I stay at my bf's too. I wouldn't want to ruin his sheets! And no, it's not negative, just realistic. How often do bed accidents happen once you are settled down with your ostomy?

 

[Carrie630]

Misty, if I had a fake stoma I'd probably want to put it in random places just to get a rise out of her

 

[FruitLoop]

i had quite a few accidents with mine but it was due to having an open abdo wound right next to it which meant the flange wouldnt stick properly.

A pre-planned stoma is always the best as they take there time over making it so is ideally positioned and nice and neat so the bags stick well.

Once mine settled down i would maybe have one accident a week - but these were mainly just minor leaks.

I had mine for 12 months and probably had 6 "major" blowouts - all of which occurred after me being a piglet and gorging late at night on stuff i wasnt supposed to eat!!

Not sure if this is the case for everyone but i found i had to avoid fish as the smell afterwards was gross!

I used peppermint oil - few drops in the bag when changing and the bathroom smelt like polos - unlike now when it smells like dead dogs

 

[littlefreebird]

1) After a shower do you change your bag or dry it off? I'm not liking this damp feeling of the bag next to my already dry skin!

2) When emptying your bag, is it embarrassing if there are people in the stools next to you? With the noise of the bag, emptying and the smell?

3) Does your skin still get itchy under the flange?

4) Do you like the bigger bags or the smaller bags or a mixture of both. If it's a mixture.. when do you prefer the larger or smaller?

That's all the questions for now. It's starting to sound like a questionnaire!

i hate the feeling of a wet bag also, personally i shower with the bag on and just change to a new bag when i get out of the shower.....i havent showered without a bag on yet, don't i'd like to lol.

when i empty the bag in public i stand in front of the toilet and kind of bend forward, the higher the bag is from the toilet the greater the chance of a splash lol! i put toilet tissue in the toilet first.
i don't notice a smell, it really depends on diet, but you can get these mint drops (there's other scents too) and when you open the bag all you smell is strong mint, so don' even worry about that.

my skin can feel itchy now and again but its still healthy and there's no redness or anything there. i definatley recommend a barrier spray, its just a mist that goes onto the skin and dries in seconds before you put the bag on.

i wear the smallest bag they have, wearing a smaller bag doesn't mean you have to empty it more than a big one because you don't really let the bags get too full anyway. plus, i don't know how i could wear a bigger one as it would hang down the top of my thigh.

 

[LOSTnut]

I empty the bag by scooting all the way back on the toilet seat, which is a decent way to prevent too much splashing. This way I also hit the water and not the rim above. This works also very well at work and other public places.

 

[Misty-Eyed]

Here is a photo of my fake stoma! Surprised it's still intact after I kept playing with it when I went to see Misty yesterday! Also, sorry it's so massive. Have no idea how to make it smaller!

Yeah it's weird how everyone has their own techniques to empty their bags. Kind of reassuring that there's more than one way to do it! Do they do rose scenting bag drops? I'd want them just so I could tell people that my poo smells of roses without actually lying!

 

[Terriernut]

I was giggling at you playing with your fake stoma last night! I have some essential oils you are welcome to sample. I also have Rose!

 

[LOSTnut]

Thanks for the pic, Michelle!

Ha - that is one nice looking stoma! Again, wish I would have had the time to play around with one before getting one.

Oh boy, it is starting to get cooler here and I seriously need to think about trouser season ..... arghhhhh

LOL - rose scent sure sounds like a nice option. I tried the white tic tacs and they work fine and fit in my little baggie with the wet wipes.

 

[ameslouise]

Thanks for the pic Michelle! I will refrain from making lewd references!!

October will be here before you know it and all of this studying will pay off!!!

- Amy

PS I helped myself to a few of the fabric bed pads when I was in the hosp for my surgery. All I had to do was mention it to my mom and she was at the linen supply closet on the ward and stuffing two of them into my overnight bag before I could bat an eye.

 

[LOSTnut]

LOL -- more power to your mom.

We used to swipe the gloves because we use it to pick up dog poop. So, everytime a family member visited they took a handful of those good ones. We are set for some time

At a 1000 a night charge I consider it a .... perk! :lol2:

 

[Misty-Eyed]

Haha I always used to take rubber gloves from uni to use when dying my hair too!

Had a great time in Cyprus, got back yesterday. Unfortunately I managed to forget about my op a little too well and fear that all my mental preparation may have been in vain. Only two weeks to go now. Eeeek!!

 

[Terriernut]

Michelle I'm sure it was good to forget for awhile. I'm really glad you had a wonderful holiday! The fear you are feeling is completely normal. Especially since you have had a year of good health. Just remember you aren't alone, ever, we are right here xxxxxxxx

 

[littlefreebird]

i agree. michelle, you're very brave going through all this with such a positive attitude. you're gonna do so much good for all those going through the same thing and are scared and looking for advice.

 

[LOSTnut]

Yeah, what Misty said!

 

[Misty-Eyed]

Thanks guys, it means a lot.

There was one day when I was sitting around the pool and suddenly had a massive pity party for myself, feeling like I shall never be able to be normal again! Probably because I felt SO well on holiday. More well than I've ever felt. Oh well. Hopefully it'll bring some peace of mind that I don't have to worry about sliding down the slippery road to being ill for a good few years.

 

[glum chump]

Hey Michelle

I'm so glad you had a great vacation. I didn't go on vacation before my surgery, and I felt really good and ready for it, but just before my surgery, I started freaking out. All the mental prep I had going on when I made the decision for the surgery went flying out the window.

About 2.5 months after my surgery, I had a HUGE pity party. Oh, it was a doozy, and like most big parties, the aftermath wasn't pretty. But that one pity party was all it took to really turn things around for me, particularly my attitude.

Your surgery is going to go great, and yes, I'm sure you'll have a lifetime of feeling fantastic. And I'm sure your stoma will be gorgeous and be all the talk of Stomatown!

Stay sane, yeah?

Kismet

 

[Misty-Eyed]

Thanks Kismet. You are truly awesome.

 

[Rob.G]

1) I wear the old bag in the shower and then change it once I'm out and dried off, being in the UK you will get a Medical Exemption Card/Cert, all your Stoma supplies will be free so no need to wash out and re-use old bags as new ones don't cost you a thing.

2) When emptying my bag I tend to lean forward slightly, bend my knees a bit to get lower and aim to hit the bowl just before the water to eliminate any splashing and splash noise :lol: I take no notice of any smell cause I'm used to it and besides... I've smelt worse coming from people without a Stoma! lol.

3) From time to time I get an itch under the wafer and I do sometimes give in to it! :lol: But the great thing I find is that because you are scratching the wafer which is just passing the vibrations through to your skin and aren't actually scratching the skin it never gets sore and yes it feels damn good to give in to it sometimes! haha.

4) I always wear the Big 'Maxi' Size Bags so I can empty them less as I'm lazy like that
Although I have got some of the Medium bags and the Small round bags that I can just clip on if need be and with a baby on the way the Small round ones will come in handy when we eventually go swimming with it.

 

[Misty-Eyed]

Thanks Rob. Don't think I'll have to bend down as I'm short anyway!


Had my pre op today which went ok. I have to have some injection the day before to stop my blood from clotting and I have some carbohydrate drinks to drink at 5.30 on the day of my op! The Dr I saw from the surgeon's team was rubbish though. She told me I was having a panproctocolectomy and then asked me if the ileostomy would be permanent or temporary?! Then she asked about previous surgeries and I said I'd had one just for a stricture DILATION. Then she looks at my stomach and and asks where the scar is from my strictureplasty. Omg she was all over the place and seemed so rushed. I was completely fine though and not scared till I got my blood test done and saw the blood transfusion card. Suddenly I was all, 'wow, it's serious'. Stupid, I know.

Bad news though, after all that, I don't know if my stoma nurse is even going to be there when I have my op!! She's in NZ as her dad is really ill

 

[Gav]

I can imagine it's quite a surreal time for you right now Michelle. Sounds like you got the usual general type surgeon who doesn't really understand about intestinal diseases! I had one like that after my follow up who hadn't got a clue about what an ileo looked like or why I had to take the bag off if he wanted to have a look at at....!!

I remember the time before my 2nd op, which was elective, was alittle surreal. I really wanted to just get on with it, but it seemed like it would just never arrive.

It's a big op, with major work being done, so it's no wonder right you will be apprehensive one moment (a totally natural reaction to major surgery) but looking forward to it the next moment, which is your logical reaction knowing that this will, after your recovery, put you in a much better place.

 

[LtHuff]

I eat alot of fiber - fruit, vegtables, etc, so my normal output is on the thicker side. Think applesauce mixed with peanut butter. But I've also had liquid output like chocolate milk. Liquid output is very easy to drain, thicker output not so much.

But liquid output is more of a hassle as it sloshes around, and eaiser to have an accident when emptying as it comes out fast.
.

Was totally biting into an arbys sandwhich when reading this lol oo:

 

[Terriernut]

:ywow: The Dr you saw today must be in another zone altogether! Or planet?

The stoma nurse not being there is not good news. However, you said they had ALOT of them there that are specialized stoma nurses? They can get you started no doubt? Its a shame if she isnt there, they are very good at calming you, and sorting things out. And as you've developed a relationship with her already, it might be a bit harder for you.

The blood transfusion card is standard Michelle. Whenever there is surgery they want to check if you will allow blood transfusions as necessary. Because alot of religions dont allow it...Jewish for instance are pretty against it.

The carbo drinks are to help your healing along. As you may not be able to eat for a wee bit.

They are going to take good care of you sweetie. Not like the L&D!!!!
:kiss::kiss::kiss::rosette2::hug::hug::hug:

 

[Misty-Eyed]

Gav- Firstly, loving your new pic. You're looking very brooding! Haha. Well I would hope she knows about intestinal disease, she works at a bowel hospital!!! She was just VERY distracted, I think and tried to make a call after she'd called me in. I saw that she was a trainee surgeon which explained a lot and she said that she was a little out of it as she'd had a few days off? No excuse anyway.

Thank you for your kind words, though. I know I'm going to be bricking it on the day but that's because it's all the unknown. I am also pretty annoyed and how fast they want me to recover. 4 laps of the ward on day 2? I was kind of looking forward to just taking the time to rest and sleep lol.

Misty- I'm sure any other stoma nurse will just be as nice as long as they site me in the correct place! They did say she's been gone a while.. her husband was the one that told me but don't like to ask when she's planning on returning! Let's hope they do look after me better! Time shall tell.

 

[Gav]

Thank you for your kind words, though. I know I'm going to be bricking it on the day but that's because it's all the unknown. I am also pretty annoyed and how fast they want me to recover. 4 laps of the ward on day 2? I was kind of looking forward to just taking the time to rest and sleep lol.

That is very much optimistic, and they probably know this and are just setting a quick target for you, I hope! After my first op I wasn't up until 4-5 days, but it was pretty much an emergency and I was so weak and thin.

After my 2nd Op they tried to get me up and walking on day 2 but I vomitted and my right leg was still numb from the epidural (this can be very normal, I didn't regain complete movement in it for over a month) so I fell over too! So if they want you to give it a try...then fair enough, but if you can't do it, don't give yourself too much grief!

Misty- I'm sure any other stoma nurse will just be as nice as long as they site me in the correct place! They did say she's been gone a while.. her husband was the one that told me but don't like to ask when she's planning on returning! Let's hope they do look after me better! Time shall tell.

As your surgery is elective I would be amazed if you are not given a quite talk about siting the stoma before your Op, even without the regular stoma nurse about. If not, tell them you won't go down until you have the magic pen mark in the desired area! Most of the nurses in the intestinal ward I was on knew all about stomas and their placement.

All of us from the forums will be thinking of you throughout your time in the hospital

 

[Misty-Eyed]

Hmm well I think it's because my surgery will be laproscopic, Gav. I'll be on the enhanced recovery programme, I guess no massive scar means I'll be more mobile, faster? I have no idea lol. I guess we shall see when the time comes.

Thanks to my practising I know exactly where I want it! I shall point it out to them and see if they agree that it's ok.

I also had a dream about it last night, wasn't a nightmare, luckily. I dreamt that they sent me home after 2 days and my bag overfilled because I'd eaten so much the day before the op and I'd completely forgotten it was there. Haha!

Thank you, though. I shall make a thread nearer the time with some before and after pics for those who have the stomach to handle such images!

 

[KazT17]

Hi Michelle, not sure if I'm too late commenting, I haven't really got involved on the forum before. I had my surgery in May this year. My wee beastie (stoma) has become my best friend. It was a bit daunting at first, but as time goes on you begin to forget about it and the only time I do think about it is when I am changing the bag. I seem to do things differently than others. I take a shower each morning and leave the bag off - it is heaven. The wee beastie is normally inactive then. I put a nice clean bag on and I am set for the day. I can now do what ever I want. No more looking anxiously for toilets every time I go out, no more 'accidents'. I am so happy now. The op was very painful, but my pain relief didn't work. I had clots on the lungs and had to get up about 12 hours after surgery and walk. But it is so worth it now though. I had one little leak because the bag was not on securely, apart from that I have never had any issues.
I go into disabled loos, if I can, for privacy. If not I put loo paper in the loo before emptying the bag. I have a spray to mask the smell but again I have no problems with this. Sometimes I get a little itchy. I use E45 and it goes away.
I am sure you will be so glad to get your life back and not have anything to worry about that you will feel the same.

Hope you have a speedy recovery, and lots of love,

Kaz xxx

 

[Nyx]

I developed clots in my lungs too Kaz...I think those were the worst part for me! But overall, they were more irritating than anything...and I wound up in ICU on Christmas Day which freaked my family out...lol Turned out well for me though, I got the good bed, the big private room, and a lovely turkey dinner for Christmas. And, because I was pretty self-sufficient by that time I got to have as many visitors as I wanted. It was a pretty good deal Who needs to breathe anyway? lol

 

[Misty-Eyed]

Thank you Kaz. No, it's far from too late so thank you for posting.

Were any of you on the contraceptive pill before your op? I got told yesterday that I was supposed to come off mine 4 weeks ago but was never told so just came off it today. Hope it won't affect anything :/

 

[KazT17]

No, I wasn't on the pill before but I was told not to use it afterwards, it is not effective with an ileostomy. It may not be absorbed properly I think they said.

I had an allergic reaction to warfarin too, I looked like I had the plague! I still have to give myself Fragmin injections Cindy. It's funny how we all come to accept whatever is thrown at us.

Kaz xxx

 

[Nyx]

I've never been on the pill so can't help you out there...

 

[Emily]

I wasn't told anything about not taking the pill beforehand. But it did just so happen that I finished the cycle about 2 days before surgery. And I was really embarrassed cause I was on my period during surgery.
But that was so silly cause I'm sure to them, that tiny amount of blood is nothing compared to what they see when they open you up:ytongue:
But yeah, I was taking the pill up to a couple days before my surgery, I'm sure what you're doing is fine.