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Crohn's Disease Forum » Surgery » Stoma Subforum » Is your ileostomy output regular?


 
11-20-2013, 10:38 AM   #31
VeganOstomy
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1. When stoma sticks straight out with output - does that mean it is more visable under clothing? Does it grow when its producing output? 2. How does anyone sleep? If you can feel it when it produces output and people are getting up to empty...how do you know when to empty if you are sleeping and if you are not awake - will it overflow and make a mess? Also, one more ?. Smells. My nurse has reassured me that there will be no smells unless the bag leaks. She keeps saying it shouldn't leak. I feel like I never want to eat again once I have this operation. I haven't scheduled it yet. I am just building up my courage. I want to know as much as I can! Thank you so much for sharing your info and concerns. I hope you continue to post - this is really helping me understand what to expect!
Lots of questions that I'd be glad to help answer based on my personal experience.

"1. When stoma sticks straight out with output - does that mean it is more visable under clothing? Does it grow when its producing output? "

Most stomas don't stick out much. If you can see anything through your clothes, it's because your pouch is really full or your appliance is raised (1 piece systems are flat compared with 2 piece)

"2. How does anyone sleep? If you can feel it when it produces output and people are getting up to empty...how do you know when to empty if you are sleeping and if you are not awake - will it overflow and make a mess? "

My stoma doesn't hurt anymore when I have output but when i could feel it it did interrupt with sleep, but that was post op and had a lot to do with the fact that my stoma was still quite swollen and even gas hurt to pass.

I often wake up once a night to empty - as the bag fills, I think your body just knows when to wake up. I haven't had an accident ķ during the day or at night ), but I've woken up when my bag was almost at the breaking point due to gas buildup. I'm trying osto ez-vents to see if they help. I don't find that timing my last meal helps with the overnight filling of my pouch, but many people find that eating no later than 7 pm helps.

"Also, one more ?. Smells. My nurse has reassured me that there will be no smells unless the bag leaks. She keeps saying it shouldn't leak. "

Your nurse is correct. It will only smell if there is a leak, which could include not cleaning the end of the pouch properly, having a clogged and wet filter or not attaching the pouch to the wafer properly if you're using a two piece.

You will probably notice odor when emptying your pouch (who doesn't have Smelly poo?) But there are many products available to help eliminate odor. I review several on my blog, my favorite right now is the Coloplast a brava lubricating deodorant.

I hope that helps.

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11-20-2013, 02:58 PM   #32
UnXmas
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Hi Unxmas, how are things going now?
firstly I think output is an individual thing. Like normal poo's some people go a few times (or more) a day, others only go every couple of days. Its only if you have a change in your normal pattern that you need to worry.The amitriptyline could definitely be slowing it all down, I was put on it for this specific purpose. Ami also can cause urinary problems. Have you been tested for a UTI?
My output is very liquid and in copious quantity because my small intestine is so short now - it sounds like yours is mostly intact so you are probably absorbing liquid well and this is decreasing the amount of output and its frequency. Think of it as a blessing in disguise. So long as you are not getting significant pain I wouldn't worry too much. Of course mention it to your GI but it is probably just normal for you. If you have a long small intestine you may be getting output similar to those with a colostomy and they do empty far less frequently.
The pain on urination is more of a concern and I'd be mentioning it to my doctor asap so that things don't get worse. Hopefully this has all resolved now but let me know how you are going.
Hi, thanks for your post. I saw the stoma nurse today and she thinks the output is fine, I'm just lucky. I have a lot of motility problems throughout my digestive system, e.g. delayed stomach emptying, so she reckons my small intestine may be moving things through very slowly. Which is a plus with the stoma though actually a sign that my digestive system doesn't function that well.

The bladder problems have been ok the last couple of days. When I rang the hospital the nurse thought that as long as it doesn't get worse (in which case I'd go to Accident and Emergency) to see my GP, so I have an appointment in a couple of weeks. When I was in hospital I was tested for a UTI multiple times, first because of the problems going, then later because they were looking for the source of the fevers I kept getting. All the tests were negative (and they never found the cause of the fevers, but I've only had one since being discharged - a couple of days when my temperature was 39C).

Last edited by UnXmas; 11-20-2013 at 03:14 PM.
11-20-2013, 03:10 PM   #33
UnXmas
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1. When stoma sticks straight out with output - does that mean it is more visable under clothing? Does it grow when its producing output? 2. How does anyone sleep? If you can feel it when it produces output and people are getting up to empty...how do you know when to empty if you are sleeping and if you are not awake - will it overflow and make a mess? Also, one more ?. Smells. My nurse has reassured me that there will be no smells unless the bag leaks. She keeps saying it shouldn't leak. I feel like I never want to eat again once I have this operation. I haven't scheduled it yet. I am just building up my courage. I want to know as much as I can! Thank you so much for sharing your info and concerns. I hope you continue to post - this is really helping me understand what to expect!
1. Mine isn't visible under clothing at any time - it would be if I wore really tight T-shirts or something. The stoma nurse was measuring my stoma today to make a template to cut the bags to, and she was explaining that she was leaving a little extra space because the stoma swells a bit when producing output. However, I've never noticed a difference visually. The bag does get a bit bigger when it's full (when it's empty it's completely flat) but not enough to notice through clothes. It reaches it's biggest when it's full of gas. This doesn't seem to happen that often for me. If I'm wearing something loose fitting it still wouldn't show through clothes. When I was in hospital a nurse showed me how you can release the gas without actually emptying the bag - which was handy when I was sick and wanting to get out of bed as little as possible, but since it does release the smell, even if it's just gas I go to the bathroom to let it out.

2. I sleep fine - I can lie on the bag without much problem. Mine doesn't seem to need emptying at night.

3. There is no smell. I've not had any leaks yet but I guess if I do they will smell. The only smell is when you empty. The stoma nurse gave me some sprays to put into the bag, but I have found that just a regular air freshener/deodoriser works better. I've got the kind where you press it and a squirt of fragrance comes out, and have one placed in each bathroom to use as I like. I also think I'm getting used to the smell. I was changing my nephew's nappy the other day, and I think nappies smell more.

4. What are your worries about eating? There are some foods you have to avoid, mainly only for the first 6 - 8 weeks after surgery. Which is where I am at the moment, so I'm avoiding most vegetables, fruit skins, nuts, seeds, whole grains. These can cause blockages so I'm cautious about trying them, but when I'm fully healed I'll start with small portions and hopefully can get a greater variety of fruit and veg back in my diet again. (At the moment the only fruit and veg I've been having are bananas, avocados, fruit juice and some very well cooked root vegetables.) Some foods cause gas. I was told fizzy coke was really bad for gas, but I've been drinking it just fine with no extra gas. Eating with a stoma isn't worrying me anymore than eating with my already messed up digestive system did. You'll be able to eat, don't worry.
11-20-2013, 07:27 PM   #34
annawato
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The stoma doesn't really become more visible when working. It does grow a little with peristalis but not by much and its hidden by the bag. I tend to wear looser clothing so the bag doesn't show but I think someone would have to be really looking to see it. My family assure me they can't see it. I feel its really obvious but them I'm looking down on it so can see it more.
In the beginning I had lots of accidents at night. I now tend to stay up til midnight and have a last empty but its probably not really necessary to do this. If the bag is stuck on well (and most times it is) then it won't leak. I think its just one of those things your body learns - to wake up and empty when necessary. You could set yourself and alarm in the beginning so that you wake up and check. It all depends on the amount of output you have too. I have a very high output so need to empty at night but many others don't.
As for feeling the output, its not very noticeable. It wouldn't stop you from sleeping.
There is no smell when the bag is on properly and not leaking. They are very well sealed and have a charcoal filter that (supposedly) lets excess gas out. The charcoal absorbs smells. Most of us find the filters don't work for letting gas out though. You just need to let it out when you empty.
i haven't had a leak for a long time. They tend to be more frequent in the beginning as you get used to doing everything and they are more common if you have a high and very liquid output that eats away at the seals. You may be lucky and not have a high output.
Its a big decision but most of us are very happy with the quality of life a stoma has given us. Good luck with it all and any more questions just ask away.
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12-09-2013, 05:46 AM   #35
UnXmas
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So now my stoma seems to work only once every 24 hours. It produces nothing all day (except a tiny bit of water-consistency fluid), then late in the evening, half a bag full gushes out literally in one go. I empty it, then nothing 'til the following evening.
12-09-2013, 08:16 AM   #36
nogutsnoglory
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Unxmas what do your docs say? Ileostomies are typically very active and unpredictable and colostomies usually have less output and behave better but your case sounds very different.
12-09-2013, 08:52 AM   #37
UnXmas
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Unxmas what do your docs say? Ileostomies are typically very active and unpredictable and colostomies usually have less output and behave better but your case sounds very different.
They say it's unusual but as I'm not getting blockages or having any other signs something is wrong, it's probably fine. I think they're so used to my body doing its own thing, my surgeon doesn't even act surprised any more.
12-09-2013, 09:14 AM   #38
2thFairy
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It seems to be a regular pattern for you, so I wouldn't think much of it. Mine is extremely active from 5 am to 7 am, no matter what time I last ate something. If you're not feeling ill and have no cramping or other indications of blockage, you should be fine.
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12-09-2013, 09:49 AM   #39
nogutsnoglory
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Well as long as it's safe it's a good "problem" to have. I'll trade you stomas lol.
12-10-2013, 05:53 AM   #40
UnXmas
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Well as long as it's safe it's a good "problem" to have. I'll trade you stomas lol.
I think I'll keep mine. Mine does like making incredibly loud noises that get me a lot of funny looks though.
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