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Crohn's Disease Forum

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You are not alone! Annawato was changing every day for a looong time due to leaks. I've tagged her so she can maybe give you some helpful information on what she did.
 
Ki3 said:
Its going ok, last weekend it leaked 8 times but we are getting the hang of it. I think dansac is the name of the company?
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Yes, Dansac is one of the commonly used brands.

If you continue to get leaks without any reason, it is worth trying kit from other manufacturers. Things like different adhesives, slightly different shapes, etc. suit one person but don't suit another.

Just ring the suppliers in the UK (the contact details are at the beginning of this Stoma Subforum). They are all happy to send you samples and most of the people who answer the telephone are very knowledgeable - some are ostomates themselves.

I use Coloplast myself.
 
Susan2 said:
Yes, Dansac is one of the commonly used brands.

If you continue to get leaks without any reason, it is worth trying kit from other manufacturers. Things like different adhesives, slightly different shapes, etc. suit one person but don't suit another.

Just ring the suppliers in the UK (the contact details are at the beginning of this Stoma Subforum). They are all happy to send you samples and most of the people who answer the telephone are very knowledgeable - some are ostomates themselves.

I use Coloplast myself.
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I agree with this - everyone's very helpful. My suppliers also have an emotional support team, who rang me a couple of weeks after I arrived home to let me know I could call them any time for support, advice on diet, etc. They specifically asked me whether I was having any leaks or skin problems.
Also my stoma nurses made the first few orders for me, so you may not have to ring the company yourself at this stage, you can probably ask your stoma nurse to order you some other products to try.
 
My stoma nurse has a cupboard full of samples that she will let you try out if you go to her with problems. I must admit that I haven't been to see her for some years now, even though they do recommend that you go regularly.
 
Do you have any idea why you are getting leaks? Are they very localized? Always in the same spot? or more general? I have a retracted stoma, so need a deep convexity base plate, and a little valley running outward from it, so use Brava strip paste to fill that in. Do you warm your skin and/or your base plate to make the adhesive more effective?

If you can think of anything that seems to be common to your incidents of leaking, someone on here might be able to help.
 
I am also surprised by the number of leaks you're getting. I know I'm unusual in not getting many at all (one so far), but there must be something specific to cause this many. I've been told a few factors that can affect the likelihood of getting leaks, but I'm sure you and your stoma nurses would have thought of these already:

The stoma nurses told me that I was an ideal candidate in a few ways concerning body shape: I have a flat stomach, they said that "beer bellies" or stomachs with rolls of fat are much harder to stick bags to. Also if you are fat it's harder for them to put the stoma in the best spot, as they can't get such a clear idea of where the muscles are (I hope this doesn't sound insulting - I just wanted to point out that body shape can be a factor). If body shape is an issue there may not be so much you can do about the leaks. Unless maybe your abdomen is very swollen from the surgery? A lot of air tends to get trapped inside during surgery.

Leaving the bag to get too full, or full of air can increase the chance of leaking. Going to long without changing the bag can mean the adhesive is less strong after several days... but clearly this isn't your problem as you're having it changed all the time.

Did the surgeon place the stoma site correctly, or perhaps there were problems with the bowel that made it difficult to get the placing right?

I'm assuming that at first the stoma nurse cut the bags for you? Maybe they're not cut to the right size for your stoma? Also your stoma can change size quite quickly at the beginning; if the template was cut in the days immediately following your surgery, is it possible your stoma's changed size already?

Is there a particular time the leaks occur? E.g if they happen when you sleep could it be you're rolling over onto the bag?

Btw I use Coloplast, so if you do switch I can say that their products work very well for me.
 
I had so many leaks at first. Your body is adjusting, you are just learning good technique and in a few weeks you will barely ever if ever have leaks.
 
I think its down to technique, some bags last and some don't, I also think my shape affects it, but opposite to what you were saying. I am very skinny and my hip bones really get in the way and make getting the flange on awkward. Nurses say if I put on weight it will get easier.
 
Coloplast may stick to your body better. Other flanges are a little rigid and they may be an issue if you have a bony abdomen. Just ask for samples from everyone and try things out and keep a log.
 
Ki3 said:
I think its down to technique, some bags last and some don't, I also think my shape affects it, but opposite to what you were saying. I am very skinny and my hip bones really get in the way and make getting the flange on awkward. Nurses say if I put on weight it will get easier.
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It sounds like your stoma must be situated differently than mine, mine is above my hip bone - with the bag on, the adhesive part is just above where my right hip bone sticks out, but it's further in toward my belly button so even if it were lower it would be next to my hip bone rather than on it.
 
My stoma isn't on my hip Bone, its just close, so sometimes the flange gets a bit bent and awkward
 
NGNG has a good point. Some of the flanges are much stiffer than others; my Coloplast is quite pliable. Another alternative might be to cut the flange to shape around your hipbone (until you put on a bit of weight :)) and secure it firmly on that side with some tape, which will be more flexible.

It's really a matter of trial and error, as what works for one person often does not work for someone else, but don't accept that anything other than the occasional leak is inevitable.
 
Yeah I think we are getting the hang of it. We had to change the bag last night but it was a bad time and she was outputting a lot, so I threw the flange on and I was so focussed on getting the bag on I forgot to press down the flange sides and it just went underneath -_- had to start again. Stupid mistake. This one lasted the night though and still seems fine.
 
Ugh I jinxed myself by saying I don't have leaks much anymore. Sure enough a few hours later I wake up with burning skin.

I am so sick of this, every time I cut it, it's a pain since my stoma is oval and swells a lot. I feel like I never get a good seal. I either cut too much opening or make it too tight. God I want a reversal! Sorry bit of an am rant.
 
nogutsnoglory said:
Ugh I jinxed myself by saying I don't have leaks much anymore. Sure enough a few hours later I wake up with burning skin.

I am so sick of this, every time I cut it, it's a pain since my stoma is oval and swells a lot. I feel like I never get a good seal. I either cut too much opening or make it too tight. God I want a reversal! Sorry bit of an am rant.
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Sorry if this was asked already, but have you tried a moldable wafer? It's designed to fit around the summa stoma and "turtleneck" it so there are no leaks. Even something like the Eakin rings could help:

http://www.youtube.com/watch?v=3BdgAL6LPjc&desktop_uri=/watch?v=3BdgAL6LPjc&app=desktop
 
I have tried moldable by Convatec but the only flange that best adheres to my skin is coloplast and they don't make moldable. I use the Eakin ring but think I'm going to switch to the coloplast ring.
 
Have you tried the Brava stick paste with your Coloplast? (it is different from paste in a tube.) My stoma is an odd shape and cutting the flange to match it is nearly impossible. Putting the stick paste around the stoma before putting the bag on is the only thing that has saved my skin. The stick paste swells up around the stoma and really gives a great seal.

http://www.us.coloplast.com/products/ostomy/accessories/strippaste/
 
2thfairy, I have it but its so tiny I feel like it wouldn't do anything. You just roll it around your whole stoma? I didn't know it swells. Do you use a ring on top of it?
 
You break off whatever size you need, flatten it out with your fingers, and then put it all around the base of the stoma. Then just put the baseplate directly on that, no additional ring. I use half of a stick for mine each time.
 
Does the size/shape of the flange really factor that much into leaks? My stoma is a lopsided oval, and also a mushroom shape (wider at the top than at the bottom). I recently tried cutting some of my own (stoma nurses had always done it before) and wasn't particularly careful about the size and shape but they've not leaked (yet).
 
If you don't get close to the stoma shape, you will have gaps of uncovered skin around the stoma that can be easily harmed by output. Some people have success with stoma paste to fill in the gaps, but the paste didn't work for me. Brava Strip Paste is wonderful with my set-up.
 
I recommend the strip paste as well...I found the paste in the tube very messy and it never went where I wanted it to. I find I can use 1/5 of a strip and fill in where I need it (I only use it on the side where my opening is...yes, my stoma is crooked...lol).
 
Ive actually just ordered a free sample of the strip paste, I'll let you know what I think of it when it comes. Also I know you have changed subjects but I had to share something.

Just had my first scary stoma experience, nope nothing went horribly wrong, don't worry. I went and emptied my bag, and saw, actual pieces of bacon. No joke. I obviously needed to chew it more but I never expected that. I thought id see little chunks of food and maybe with veg, bigger chunks but like it was 6 full cm of bacon, whole. I thought stomachs were meant to blend food! It scared me omg!

To be honest, at the moment I'm laughing as its hilarious but wow just an unexpected scare. Ha ha.
 
I had a whole chunk of green onion come out once. It didn't scare me so much as made me think "when the hell did I eat green onions?" lol
 
SOOOO many times I've had something come out and then spent 20 minutes trying to figure out where it came from (what the heck did I eat?!?). I think seeing mushrooms is the most interesting. It doesn't seem to matter how much you chew them, they still manage to come out in one piece.

Oh, and corn.....too funny!!!! I call it birthing corn. I can push just above the stoma and force it out. Hahaha!! Looks the same coming out as it does going in.
 
Ha ha yeah the stoma nurse had seen a whole mushroom come out before. I didn't realise I could actually swallow my bacon so whole! I swear I chew it more!

Also quick question- can you tell by the look of a flange/base thing if its going to leak? I can see this lump and I think it might be a leak but I'm about to go to sleep I don't want to change bags :/
 
I know that with my flanges I can tell when the adhesive is getting sketchy. I use Coloplast and I find that when it looks whitish underneath, it's time to change. If you're worried about it, and think it might possibly leak, might be better to be safe than sorry.
 
Yeah Its gone white, I don't use coloplast but I'm almost certain its an accident waiting to happen. But I don't know, if I sleep on my side she might last until the morning when she is least active? I don't know if I should take it off :S
 
The weirdest one for me was when I had chinese food one night and the next day I was passing whole bean sprout things from the egg rolls! I could have sworn I chewed those up!
 
Hahaha I'm looking foward to seeing what I've eaten in the contents of my bag ha ha. I decided to change it and be leak free. Just in case.
 
Truly, the best way to learn about digestion is to ask an ostomate. We see things that most people will never see--and it's really cool!!
 
Btw does anyone else get annoying itches under the bag where they can never be scratched?!
 
haha, I love this thread. I can identify just about everything I eat. Tuna! Chicken. Corn. Carrots, any green veggie. I really need to chew better. I'm still trying to work out how mushrooms and peas come out bigger than when they went in!
Re leaks and changing bags. Touchwood, I havent had a leak for ages - they seem to be common in the beginning and around the 3 month mark become less and less. (Just when temporary ostomates are getting reversed.) I'm not sure if its cos we get better at doing everything or if our skin toughens up or what. Anyway, I still have to change every second day - could probably go longer but would end up with excoriated skin all around my stoma - its always a bit raw but two is the maximum before it gets too painful.
Ki3, are you still getting leaks? Is your output very liquid? Do you have a high output? When you take your bag off can you see on the baseplate where the leak is originating from? Is your stoma a good sticky out one or is it concave or fairly flat? All these (plus More) affect why a leak is happening so if you can give me more info I may (underline may) be able to help. I was the queen of leaks. Used to wake up regularly in a world of $#!@. Hopefully its getting better for you now and I'm sorry to have come on so late to the discussion.
Maimmie, nice to see you on here again - how is it all going for you?
@thy, as usual all your posts give me a laugh - we seem to have the same sense of humour!
Melinda I had trouble falling pregnant with my second pregnancy. They said my fallopain tubes were all clumped together so we ended up doing GIFT which is similar to IVF. Anwya when they did the actual transfer of eggs over the clumped fallopian tubes they said there was nothing wrong with them. Since being diagnosed with crohn's I'm guessing that the crohn's was also attacking my fallopian tubes. It would be interesting to see how many crohn's women have trouble falling pregnant. Anyway we were lucky and ended up with twins. I hope your lung problems have sorted themselves out and you can go ahead and get everything else fixed. I can understand how difficult, sad and stressful it must be for you but jusst wanted to let you kow that even though my troubles were different from yours we ended up with two beautiful babies. (now beautiful 22 year olds)
:heart: anna
 
OMG, just looked at all I'd written. No wonder I never have enough time to come on here - I write an essay in response to every thread!!!!!
 
Ah thank you all for the responses, I'll have to try some of those drinks and have fun hahaha! Apparently if you drink red koolaid you get red output for a week. Sounds fun. I don't think we get it in uk though, I'm not sure.

Anna, yeah I get leaks lots. Last night I saw it before it leaked and changed it, but woke up this morning and it had leaked :/ I have a sticky out stoma (called lily ha ha) so I make sure that I pick her up and tick the base under her, as to start with we didn't and I got sooooo many leaks as the poop went straight to my skin.
The output depends really, it is getting much more solid now but at some times in the day its still very watery, which is when it leaks :/ I thought she would kinda snooze over night but its like she works overtime! Night is always leak time. Its more solid in the day so no leaks really. When I take a leaking bag off I can see where it got under, but its different every time so I don't know why.
 
UnXmas said:
Btw does anyone else get annoying itches under the bag where they can never be scratched?!
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Ugh yes. If you wear a 2 piece you can push down on the barrier and push it around a bit as it provides some relief. I also find scratching with coloplast barrier on is safer than the other less sturdy materials used for barriers.

They say if you are itching you are leaking but it's not always the case. If you have persistent bad itch it could be a yeast infection and require powder from your stoma nurse.
 
I forgot to say about that, I hate that! Sometimes I feel my actual stoma itself is itching, I don't know why or how but its impossible to scratch! Hate itches under the barrier.
 
Hey anna, ya I didn't post for a while. Just got busy and didn't check the forum much. As far as my stoma goes, everything is great! Its worked wonderfully up until recently. I had a very busy summer of camping and boating and enjoying life! I unfortunately am flaring again now so I'm not feeling as wonderful but what are gonna do? I'm still better then I would be if I didn't have my ostomy! I can't believe its been almost a year and how far I have come. The help provided on this forum played a large part in how well I adjusted to life with Audrey. I'm so thankful for all of you here! So glad I can come and share my experiences here and hopefully help some newbies through those tough first few weeks now.
I didn't have a lot of problems with leaks so I can't really give much advise there. I would think that would be so frustrating! All I can say is keep trying different bags until you find what works for you. Everyone is so different and what they need and want in a bag is different.
 
Unxmas- yes I can't stand those annoying itchy spots under the bag I am there smacking my bag and I get weird looks from people at my house lol but sometimes it's the only thing that helps other than taking the bag off and rubbing where it itches.
Anna- thank you for sharing your story with me unfortunately I'm still waiting to get my surgery as my lung has a partial collapse,pneumonia, and a lung infection all in the right lung so I just finished my 2nd round of antibiotics and I see the respiratory specialist in January and hopefully get the ok to go ahead with the surgery. I'm hoping I can go back to TTC after I heal up but there's a lot of "possible" surgeries they might need to do depending on what they see when they get in there including histerectomy so I'm very scared and worried and just hoping I can get the chance tro try and have a child after all this is over with.
 
Has anyone got advise on cutting the stitches around the stoma? My stitches are meant to be dissolvable but they never dissolved and tomorrow the nurse is taking them out. I'm so nervous because when I had my drain removed in hospital, when they cut the stitches it hurt like hell! I was in tears! I'm so so nervous about tomorrow omg it sounds so painful!
 
I'm sure it will be fine, and if not it will be very quick. Just put your mind to somewhere relaxing that you enjoy while its being done and it will be over before you know it. :ghug:
 
I've still got my stitches in from my October surgery. Usually I pull my own out before a nurse gets to them but they're being stubborn this time.
 
I'm going to ask if they HAVE to come out today. The nurses will be here soon... wish me luck...
 
Yay! The nurse said it all looked good and it wasn't bothering me, so she left them in :)xx
 
I found once the stitches had come out, my stoma started to be a lot easier on the eye too! For the first few weeks I was worried it was going to pull straight back inside my stomach, nurse said I was being stupid lol. It's still there now thank goodness but have to say I'm having a bout of the itches this evening. It's annoying as he'll and for anyone who doesn't know it's like having an itch under a plaster cast. Is it a leak? Isn't it? Do I change the bag? Do i not? Grrrrrr
 
Omg you guys make me cringe! Just pulling them out sounds so painful! I'm leaving mine alone!
 
grt73 said:
I found once the stitches had come out, my stoma started to be a lot easier on the eye too! For the first few weeks I was worried it was going to pull straight back inside my stomach, nurse said I was being stupid lol. It's still there now thank goodness but have to say I'm having a bout of the itches this evening. It's annoying as he'll and for anyone who doesn't know it's like having an itch under a plaster cast. Is it a leak? Isn't it? Do I change the bag? Do i not? Grrrrrr
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Wouldn't you see or smell it if it was a leak?
 
You can get a leak under the adhesive that never makes it to the outside and breaks the seal. They are itchy and corrosive to the skin. It sucks!!
 
Omg yes! If the flange like turned purple when it got output on it we could see if its leaking under! Your a genius NGNG!!! Someone should make that!
 
Yeah I usually know if it is a leak worth changing. If you see it then its defo time to do a pit stop! I think sometimes it just likes to itch lol.
 
Change of subject but my surgery was a month ago, a little over, and I just pooped the ol' fashioned way. When I wiped there was blood. I've never EVER had blood from my butt before. I'm kinda worried.
 
Ki3, that sounds like something you should check with a doctor pretty quickly. I stopped passing anything the normal way within days of my surgery. I've read that it's normal to pass mucous and other waste products from time to time, even when the surgery was a long time ago, but not blood I don't think. Blood is common in the days immediately following the surgery, but this long after I think it's something to seek advice about. Was it a lot of blood? If the poop you passed was quite hard, it may just be blood from a superficial tear in the skin (I used to get this a lot pre-ostomy), but I'd get it checked out to be on the safe side.
 
I don't think it could have torn the skin as it was pretty soft and was easy to get out. (tmi lol) I'm gonna tell my mum and ring the stoma nurse just to be safe.
 
So I met some old co-workers at a bar and they had the weirdest stall ever! It was practically open for anyone to see you. This guy is like washing his hands an inch from me as I stand to empty my pouch. I suppose if I sat down maybe he would only see part of me but it was weird because in public I squat and if he was looking he would hear poop and smell it but see I'm facing the toilet lol. Awkward and had to share haha.
 
Very funny! You aren't by chance going to the Olympics, are you? On one of the news channels, they were saying that in the bathrooms that have been built, there are no separate stalls, or dividers between each toilet! Awkward?!
 
Sooo, here I am day 3 of having my stoma, all a bit new and scary to be honest. It's temporary, but I didn't know I was going to have it (had 30cm of TI removed on Wednesday due to a perforation). Saw the stoma nurse today and she will come back on Monday. She wants to know if I want a one piece or two piece bag. Any suggestions? Currently have the two piece.. I like the idea of only having to change the base plate twice a week (I think?) but I think that's because my stoma is still a bit scary to me! Anyway, I'd appreciate any tips etc :)
 
Hi Aussie welcome to the club. I prefer the 2 piece that way I can change the bag if i want a different size for night or day, if it smells or if the bag got damaged but the base is ok.

I really see no advantage to a one piece other than its a little more discreet. I always find the 2 piece more comfy and you can burp it and check on your stoma and reapply paste etc.
 
AussieMumma said:
Sooo, here I am day 3 of having my stoma, all a bit new and scary to be honest. It's temporary, but I didn't know I was going to have it (had 30cm of TI removed on Wednesday due to a perforation). Saw the stoma nurse today and she will come back on Monday. She wants to know if I want a one piece or two piece bag. Any suggestions? Currently have the two piece.. I like the idea of only having to change the base plate twice a week (I think?) but I think that's because my stoma is still a bit scary to me! Anyway, I'd appreciate any tips etc :)
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Hi, I hope you're adjusting well! I had so long to prepare for mine, I can't imagine what it would be like to have it unplanned. I've only had my stoma three months (and I love it!) and have so far only tried one-piece, which seems to work fine for me, so I haven't been tempted to experiment with others yet. I change mine every couple of days, although it's not usually necessary for me to do so, I just prefer having a clean one. I've gotten quite quick about changing it now, so I don't find it any big deal to change frequently.
 
Thanks for the welcome. This is a whole new world to me! I am thinking of just asking for the current two piece bag I am wearing, because at least I get a little bit of practise with it before they send me home, plus I won't have to reapply the base plate every time I change the bag. Is it weird that my actual stoma still freaks me out a bit? I feel like I have this little alien attached to me! Hopefully it will become normal soon, but right now it is scary and unknown!
 
Try not to be so hard on yourself, AussieMumma- you have been through a lot this week! Things turned around for me considerably the minute I stepped back into my house, with my family there. I think you mentioned that you have a little one who was born in Sept? Just think how happy she will be to have her mommy back! After you heal from the surgery, your alien might turn into your friend, because you will not have such miserable pain like you did before the surgery. Maybe you will even give it a name, like a lot of us have done!

As for the bags, I was happy with the 2 piece. I don't know how the ostomy supply companies work where you are, but here, they were very informative, sent quite a few different samples of different bag styles and products for free, and also had a number to call to answer any questions.

In all honesty, my first few weeks I had some major tears flowing, in the morning when I would shower and change my bag or base plate. My teenage daughter fixed that, and offered to help. We kind of turned it into "arts and craft time." I would trace the stoma on the flange, and she would cut it while I showered. It just felt good that my family wanted to help, and we had some silly laughs once in a while!

Just take one day at a time- sending hugs and encouragement! :dusty:
 
AussieMumma said:
Sooo, here I am day 3 of having my stoma, all a bit new and scary to be honest. It's temporary, but I didn't know I was going to have it (had 30cm of TI removed on Wednesday due to a perforation). Saw the stoma nurse today and she will come back on Monday. She wants to know if I want a one piece or two piece bag. Any suggestions? Currently have the two piece.. I like the idea of only having to change the base plate twice a week (I think?) but I think that's because my stoma is still a bit scary to me! Anyway, I'd appreciate any tips etc :)
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Welcome to our club!! I also got my stoma due to a perforation (boy isn't that fun??!! not!!). I've had mine for 4 years now, and I've always used a 2 piece system. I like the fact that I can get away with keeping the base plate on for between 5 and 7 days, and change the bag whenever I want. I also find it's easier to clean both the stoma and the bag with the 2 piece...I used to hate trying to shoot water into the bag to get it clean. This way, you can be sure that everything's spic and span :) There's a sticky at the top of the forum with the numbers for all the major ostomy companies. Give them a call and they'll send you freebies so you can figure out which brand works the best for you. Good luck! Keep us posted on your progress and of course, feel free to ask any questions that pop into your head :)
 
AussieMumma said:
Is it weird that my actual stoma still freaks me out a bit? I feel like I have this little alien attached to me! Hopefully it will become normal soon, but right now it is scary and unknown!
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Not at all. I freaked when I saw mine - it was so much bigger than I expected and bleeding everywhere. It's shrunk to about the quarter of the size it started at now, and stopped bleeding (both these things are to be expected - most stomas shrink a great deal over the first several weeks, and it's common for them to pass a lot of blood straight after surgery).

But I think even if I still had a big, bleeding stoma I would have gotten used to it pretty quickly. When I first saw it I had this odd sensation that it wasn't a part of me. This may sound weird, but the closest feeling I'd had to that previously was when I was a child and got my ears pierced - I got home and looked in the mirror and was struck by the thought that I just irreversibly changed a part of my body. The stoma was like that but on a much bigger scale! But I adapted very quickly. I did name my stoma after seeing so many people here who did so, but I can't really get used to calling it by a name, because to me it doesn't feel separate to me - it's just a part of my body that I have some control over but which also acts independently in some aspects. Like many other organs - my eyes for example; I can't control all their reflexes and reactions, but I can control some of their movements, I can make sure I take care of them properly, getting my sight tested - they're just one part that makes up my physical self, and I think of my stoma in the same way.

I actually like the process of changing my bag and cleaning my stoma now. It gives me the nice thought that I am looking after myself and I like the lovely fresh, clean feeling of a new bag, like I feel after washing my hair or getting my teeth professionally cleaned.

And now, three months after getting it, it doesn't figure into my thoughts all that much anymore. I do have to watch my diet very carefully, because when I started introducing fibrous foods I got a blockage very quickly. So it sticks in my mind when I'm deciding what to eat - but with more time I think I'll become better at avoiding risky foods without having to think about it so much. And I did have to think of my diet quite carefully before the stoma too - it's just that where before eating wrong would give me uncomfortable Crohn's symptoms, now it could actually pose a risk to my health, so I'm very careful. But I'd rather be thinking of what to eat than spending hours in pain in the bathroom like I did pre-stoma!

So it's just another body part to me now. :)
 
Thanks for you replies everyone, they mean a lot! I actually am up and about and emptying my bag on my own today, so slowly getting used to it. I know it's only a little thing, but it's making it all a bit more normal. Are blockages quite common? I have been eating quite a low fibre diet since yesterday (when I was allowed to eat again!), I am hoping I can go back to more normal foods as I have been eating very low fibre/ minimal the past few weeks when things have been flaring up. The pain is so much better for sure, I have to remember that! All I have now is healing pain (from the surgery) which is about a million times better than what I was experiencing last week! :)
 
I find 2 piece bags easier as you can make sure your stoma is properly through the hole and its a nice fit and that its not going under the base plate, whereas with a 1 piece theres a bag in the way and its harder to make sure the stoma is ok :) My stoma was a surprise too, I was told it was a possibility but I wasn't marked or anything as it was unlikely I would need it. I was very scared at first too but my stoma has developed its own little personality, I called it Lily ( Lilyostomy ha ha) and we get along :) sometimes she is a pain In the .. stomach I guess haha but well I like having my stoma :)
 
AussieMumma said:
Thanks for you replies everyone, they mean a lot! I actually am up and about and emptying my bag on my own today, so slowly getting used to it. I know it's only a little thing, but it's making it all a bit more normal. Are blockages quite common? I have been eating quite a low fibre diet since yesterday (when I was allowed to eat again!), I am hoping I can go back to more normal foods as I have been eating very low fibre/ minimal the past few weeks when things have been flaring up. The pain is so much better for sure, I have to remember that! All I have now is healing pain (from the surgery) which is about a million times better than what I was experiencing last week! :)
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I was told it's best to wait 6 - 8 weeks to introduce blockage-causing foods as the stoma is still swollen until that time, meaning the opening is smaller and things can more easily get stuck.

As I said in my post above, just a small amount of blockage-causing food made me very ill. The reactions were so dramatic and so well-correlated with my attempts to change my diet that it was clear what was going on.

I think my reaction is more extreme than most; read most ileostomy sites or information leaflets, and they usually tell you that you can expect to resume a normal diet, full of fruits, veges, etc. and will maybe only have to exclude a couple of the worst offenders or choose better options (e.g. cooking veg well, avoiding pips and fruit skins but eating fruit). I certainly got the impression from my stoma nurse that it wasn't a dire emergency if I ate one of the foods that we're warned about - yet for me that is what it amounted to when it came to it.

So I would say that while many do go back to being able to eat fibre, there are exceptions - like me - so introduce foods carefully. Before I had a blockage, the changes in my diet led to my stoma output become full of hard little bits, whereas normally it is smooth, and moderate stomach cramps. After a couple of days of eating like this and with this bitty output - blockage. Another try a couple of weeks later, a much smaller amount of fibre, and I was back to stomach cramping and nausea.

So I've given up on the idea of a normal diet for myself. But it's not too bad, my diet isn't really that limited in most respects. It's just the lack of fresh fruit and veg that gets me down a bit. I can do alright with some very well cooked veg in very tiny portions, tinned pears and fruit juice, bananas and stewed apples. Plus some other things like smooth tomato soup. I do without whole grains, dried fruit, nuts and seeds. In terms of vitamins I think I get what I need, though my diet does feel unhealthy since I lack fresh greens and whole-grains, even though, for me, it would be far more unhealthy to risk eating them. It's hard to think beyond all the messages we're bombarded with about healthy eating, which doesn't account for those of us with unusual digestive systems!

Edit: an important thing I forgot to ask: what kind of stoma do you have? This may make a big difference.
 
I have an ileostomy (is that what you mean?).. I haven't eaten raw fruit/veg yet, only steamed etc. although I believe I do have some sort of salad coming for lunch today.. I wonder how that will go.. At least I'm in hospital incase there are any dramas! :)
 
AussieMumma said:
I have an ileostomy (is that what you mean?).. I haven't eaten raw fruit/veg yet, only steamed etc. although I believe I do have some sort of salad coming for lunch today.. I wonder how that will go.. At least I'm in hospital incase there are any dramas! :)
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Yes that's what I meant - I don't know a whole lot about colostomies, but I'm pretty certain they don't have nearly as much as effect on digestion as ileostomies do.

I really wouldn't try a salad at this point! Six to eight weeks is standard before trying anything high in fibre, and salad can be one of the worst things for many. I'd seriously check with your stoma nurse before you eat salad.
 
They are checking my diet and only allow me certain things, including the salad (strangely) I gave the salad a go for lunch.. It had carrot, tabbouleh, cucumber.. Dear me.. Lol. So far so good. I guess if there is going to be an issue with it I would like it to be here in the hospital! How long do you think it would be before I would notice a problem? Also, very weird that I found one of my slow release pain meds fully undigested in my bag today when I was emptying it!! :-o
 
AussieMumma said:
They are checking my diet and only allow me certain things, including the salad (strangely) I gave the salad a go for lunch.. It had carrot, tabbouleh, cucumber.. Dear me.. Lol. So far so good. I guess if there is going to be an issue with it I would like it to be here in the hospital! How long do you think it would be before I would notice a problem? Also, very weird that I found one of my slow release pain meds fully undigested in my bag today when I was emptying it!! :-o
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Yes - you need to check all your meds, as some you simply can't absorb with an ileostomy, especially those which are slow-release. Some will have to be replaced with other forms (e.g. liquid meds can be better).

It doesn't sound like you're being properly informed. :( Don't eat any more cucumber! Eat carrot only well-cooked. Don't eat any tomatoes, lettuce or anything with skins or pips, don't eat any nuts or seeds or dried fruit. The amount you eat is also important - the more fibre you eat, the more there is to clump together and block the stoma.

In a day or two you should feel the effects, if there are to be any. You may well be ok, or maybe just get some pain or nausea, but your stoma is very new and very swollen and you shouldn't take unnecessary risks.

Sorry if it sounds like I'm overreacting (and perhaps I am), but it's not just feeling ill you're risking - at the extreme end it can cause an emergency. I spent last Christmas in terrible pain retching over a bowl for days because I ate some soup with beans and sweetcorn and things in, and then got pretty bad stomach pains on another occasion because I ate a peeled apple. The doctor I saw during the first episode told me I had a partial blockage - he warned me that if I'd eaten much more I would have had a full blockage and would have been rushed to emergency surgery. Yes, my reaction is the extreme end of the spectrum, but this was after all the swelling from the surgery had gone away - your stoma is so new and swollen still!

I'd seriously be asking your doctors/stoma nurses some questions about what you should and shouldn't be eating.

I'm sure you're actually going to be fine after I've said all this and I'll sound like a neurotic, but I'd hate for you to go through what I went through for the sake of some cucumber. :p
 
No, I appreciate your response! I have read all the materials my stoma nurse gave me and it says I can pretty much eat what I did before blah blah, which was why I wasn't too concerned. Just said to chew everything well and take caution with a few foods (eg stringy fruits, dried fruit, nuts etc). I will speak some more to my stoma nurse tomorrow and see what she says. As for the meds, weird that they have given me this slow release thing if it's not going to be absorbed! Will speak with my dr about that tomorrow! I am compiling a big list of questions which need to be answered before I get out of here :)
 
Hi everyone. I am a new member to this forum and I would just like to say that what I have read so far since joining just last week I now know that I am not the only person going through everything. I hope to be of some support for anyone having similar experiences as me and I hope to make friends too :)
 
No, I appreciate your response! I have read all the materials my stoma nurse gave me and it says I can pretty much eat what I did before blah blah, which was why I wasn't too concerned. Just said to chew everything well and take caution with a few foods (eg stringy fruits, dried fruit, nuts etc). I will speak some more to my stoma nurse tomorrow and see what she says. As for the meds, weird that they have given me this slow release thing if it's not going to be absorbed! Will speak with my dr about that tomorrow! I am compiling a big list of questions which need to be answered before I get out of here
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My stoma nurse made it sound like not too big a deal also, as does quite a lot of the literature I've read, so I'm pretty sure my reaction is not the norm - but now the nurse has completely changed her tune, and the doctor I saw was taking it very seriously. I reckon part of it is that they don't want to discourage people from eating fruit and veg and for many people with ileostomies that's fine, but there are going to be some people for who it's not, and I really think I should have been warned more beforehand, even if it was just telling me the worst-case-scenario. Everyone was so blasé about it, which is why I wasn't taking much care when I started introducing fibre several weeks post-op, and found out the hard way what it means to be the exception to the rule!

But you are in hospital, so they'll sort you out quick should you start feeling ill. Just make sure you tell someone right away if you feel any pain or nausea.
 
BrightonLou said:
Hi everyone. I am a new member to this forum and I would just like to say that what I have read so far since joining just last week I now know that I am not the only person going through everything. I hope to be of some support for anyone having similar experiences as me and I hope to make friends too :)
Click to expand...

Hi BrightonLou! Welcome to the forum. Do you have a stoma? This forum has been a great source of support and information for me, I hope you'll like it here too. :)
 
I am not having bathroom luck lately. See previous post about the weirdest stall ever.

The latest episode was at a bathroom in a diner. I'm in the stall and some jerk shut the bathroom lights. It was so dark I couldn't find the toilet paper and was fumbling to get the stall lock open. I was in a slight panic but all was well haha.
 
I had an idea for a brilliant invention. You know you can train dogs to alert people with illnesses or disabilities? For example to alert a person who can't hear if a fire alarm goes off, or I think I've heard of dogs who can tell when someone is going to have a fit. So I thought I would train my dog to alert me when my stoma bag starts leaking. As we know, dogs have a great sense of smell, so they must be able to detect a leak as soon as it starts. So now I just need to train her to alert me when that happens! :p

(Unfortunately I don't think my dog is intelligent enough for this to work. :( ;) But many dogs must be able to learn.)
 
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That seems really hard to train. You would need to know and then your dog needs to smell it and how do you get the dog to show they know? They won't randomly bark or go nuts.
 
UnXmas said:
I had an idea for a brilliant invention. You know you can train dogs to alert people with illnesses or disabilities? For example to alert a person who can't hear if a fire alarm goes off, or I think I've heard of dogs who can tell when someone is going to have a fit. So I thought I would train my dog to alert me when my stoma bag starts leaking. As we know, dogs have a great sense of smell, so they must be able to detect a leak as soon as it starts. So now I just need to train her to alert me when that happens! :p

(Unfortunately I don't think my dog is intelligent enough for this to work. :( ;) But many dogs must be able to learn.)
Click to expand...

If they made certain layers in the wafer able to change color when wet, you'd easily be able to tell if there was a leak or if the wafer was compromised. I think the majority of us feel burning when the wafer/rings degrade and that's likely the earliest indicator we'll get.
 
nogutsnoglory said:
That seems really hard to train. You would need to know and then your dog needs to smell it and how do you get the dog to show they know? They won't randomly bark or go nuts.
Click to expand...

I'm not sure, but I've seen working dogs and therapy dogs to do some pretty amazing things. I guess they could train them the same way they train dogs to sniff out drugs, or rescue dogs to locate people underwater. Get the dog to smell the stoma bag and reward it for going so. Dogs can be trained to bark when they find something they know they're supposed to find, or to alert owners - there are dogs that are used by deaf people to alert them when the doorbell rings or fire alarm goes off.
 

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