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11-09-2013, 09:07 AM   #1
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Is your ileostomy output regular?

I've only had my ileostomy a few weeks, and most of that time I was in the hospital and it wasn't functioning, so I've only had a working ileostomy for a little over a week. I was reading other threads and wondering about the amount of output and the timing of output that I'm getting.

My stoma nurse told me most people's ileostomies produce something around an hour after eating, and that they need emptying several times a day. Mine is not like this at all. It seems to go the whole day producing nothing at all, then, usually in the evening, it fills up a couple of times - it gets about half full, I empty it, an hour or so later it's half full again, I empty it again. Even emptying it when it is only half full, I only have to empty it about three times during the evening. I sleep through the night without emptying it at all, and it's usually still empty when I wake up in the morning (and stays that way until the evening).

At first I thought it was because I wasn't eating much, but I'm feel much better and eating more now, and drinking plenty. The output is the thickness and consistency it's supposed to be.

This actually feels like a good thing - the time I spend emptying the bag is minimal - but I was wondering if it's normal. My stoma nurse saw me a couple of days ago and she was very happy with how it's going. I told her the pattern it seems to be following, and she didn't really say anything, she just reiterated that most people find an ileostomy produces output after eating, but wasn't concerned that mine didn't - she said it must be because my remaining digestive tract isn't functioning regularly.

I'm not worried as I feel fine, there's no pain or anything, and, because I had complications following the surgery, while I was in hospital they did several x-rays to check for blockages and also put some kind of tube/camera (I'm not sure, I was making sure I didn't look at what they were doing!) into the stoma and so they're pretty certain it's all fine now that the complications are resolving - I had post-surgical ileus, and though I feel much better now, the doctor said it would take a few months before my digestive system got back to the level of functioning it would be at if it weren't for the ileus (and it didn't function well in the first place).

So is this low level of output and the long times without anything coming out just due to my irregular digestive system, a consequence of the ileus which I'm still getting over, or do other people's ileostomies also function this way?
11-09-2013, 11:20 AM   #2
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I'm guessing you are still getting over your ileus to a certain extent.
Spending the night and waking up with an empty bag is pretty unusual so I'm really guessing it might be the ileus that makes it so that your activity during the day allows your GI to be more functional than when you sleep at night.
My stoma gets active pretty much right after I eat. Then again roughly 3 hours after. It fills during the night and in the morning when I start my day I have to empty like 30min-1h after regardless if I eat or not.
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11-09-2013, 11:27 AM   #3
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Mine is active all day but worst in the evening. I has read that if you don't see any output for 4-6 hours to call your doctor but in your case it may just be due to your recovery. I think it's pretty atypical for your stoma to be that inactive especially with an ileostomy.
11-09-2013, 11:34 AM   #4
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That's not uncommon for me, but I have a colostomy. For the most part I only have to empty once a day, and I never have output overnight.
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11-09-2013, 11:52 AM   #5
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Thanks for your responses.

Nyx - I think it is different with an ileostomy.

nogutsnoglory - I'd also been given instructions saying that if I had 4 - 6 hours with no output I should contact a doctor. The first day home from the hospital, I was worrying over it, waiting for some activity, but even though many hours went by, I really didn't want to risk going back into hospital. I know that so soon after a complicated surgery, the slightest indication that something could possibly not be right, they'd be readmitting me just to be on the safe side. So since I wasn't in pain, I waited it out, and now it's been this way long enough that I'm confident it's not the sign of anything sinister - not immediately sinister anyway, as a blockage would have made itself known by now, and I'm feeling less and less pain and more and more able to eat every day.

So I guess PsychoJane is right, since this is unusual it's probably still my gut working very very slowly. The x-rays showed no blockage but my intestines were extremely dilated. And I presume that since the stool is moving slowly, it spends longer in my intestine, more water is reabsorbed, so the output is of smaller volume? Or does the remaining small intestine not absorb water?

Thanks for all your input. Since it's atypical, I'll bring it up when I see my surgeon in a couple of weeks time. I'm also seeing my stoma nurse again before then, so I can ask her about it again too.
11-09-2013, 01:12 PM   #6
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It's not suppose to be its function (absorbing water) but it do adapt and absorb more water over time normally.
11-10-2013, 06:26 AM   #7
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Well today it's produced a small amount mid-morning, so what do I know?
11-10-2013, 08:43 AM   #8
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Your output may change a lot over the next few months. In the first few months after surgery, my output was a near constant trickle all day and I had to get up a couple of times at night as well to empty. After about 6-8 months, the output slowed down and began to follow my previous schedule of activity when I still had a colon (that was not functioning well). My stoma is very active for the first 2 hours after I wake up in the morning and around 2:30 in the afternoon regardless of when or what I eat. When I do eat something, it will start moving straight away. When eating a full meal, I have to empty within 30 minutes from the start.

Everybody is different. As long as you feel well and are not losing weight or getting dehydrated, your body is probably just adjusting and not that there is a problem. You will find a pattern in there soon.
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11-11-2013, 05:56 AM   #9
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Your output may change a lot over the next few months. In the first few months after surgery, my output was a near constant trickle all day and I had to get up a couple of times at night as well to empty. After about 6-8 months, the output slowed down and began to follow my previous schedule of activity when I still had a colon (that was not functioning well). My stoma is very active for the first 2 hours after I wake up in the morning and around 2:30 in the afternoon regardless of when or what I eat. When I do eat something, it will start moving straight away. When eating a full meal, I have to empty within 30 minutes from the start.

Everybody is different. As long as you feel well and are not losing weight or getting dehydrated, your body is probably just adjusting and not that there is a problem. You will find a pattern in there soon.
I think you're right. I think I posted this a bit prematurely, as today it's been working all morning. I think my intestine's still gradually getting over the paralysis.

Btw I was told you can't feel anything touch your stoma as there are no nerve endings, but every time my stoma produces output, or even just gas, I definitely feel something and it feels quite sore - I'm guess in the soreness will go away in time too?
11-11-2013, 06:42 AM   #10
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The soreness will go away, but you might always feel something. Some people do, some don't. I feel everything when it is active, especially when it constricts and sticks straight out. I think we have all been told we won't feel anything touch the stoma, but most of us feel something at one time or another.
11-11-2013, 07:41 AM   #11
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After about 6-8 months, the output slowed down and began to follow my previous schedule of activity when I still had a colon (that was not functioning well).
I'm hoping this happens with me as well. Not that I'm complaining about my current output, but less frequency=more predictable in my mind.

I'm only just over 2 months out, so I do anticipate more changes to happen.

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11-11-2013, 06:45 PM   #12
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I'm with you all on hoping the output slows down. I was out today and the restroom had one stall. The guy in there took 15 minutes! I was so pissed but thank goodness for my bag because pre-ostomy I'd crap my pants. I was started to wonder if the guy in there had an ostomy and was changing his appliance. That would be a unique way to make a new ostomy friend lol. If you don't have IBD or an ostomy get the hell out of the stall!
11-12-2013, 07:09 AM   #13
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I'm with you all on hoping the output slows down. I was out today and the restroom had one stall. The guy in there took 15 minutes! I was so pissed but thank goodness for my bag because pre-ostomy I'd crap my pants. I was started to wonder if the guy in there had an ostomy and was changing his appliance. That would be a unique way to make a new ostomy friend lol. If you don't have IBD or an ostomy get the hell out of the stall!
Pre-ileostomy I would have been the one taking up the restroom forever and keeping everyone else waiting!

My ileostomy output has stopped following the schedule of only being active in the evening - it's now happening seemingly at any time - but there's still hardly any output. I emptied it twice yesterday, and it wasn't even full when I did so. There was a tiny amount in the bag when I woke up this morning, and now it's midday and there's been nothing more since.
11-13-2013, 07:13 AM   #14
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In the past 24 hours, all my stoma has produced is half a bag.

I'm wondering if it's because I take Amitriptyline, which caused me to become very constipated prior to the surgery.
11-13-2013, 07:44 AM   #15
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It could be. Are you having any pain at all?
11-13-2013, 08:42 AM   #16
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Only the soreness around the stoma that's been there since the surgery - it gets worse right before something comes out, including gas, then quickly dissipates once the activity stops.

Also, for two days after the surgery, I couldn't pee. They did an ultrasound of my bladder and said it was so full they couldn't believe I wasn't in agony, but I didn't even feel uncomfortable. They were going to put in a catheter (which I hate!) but then it resolved on its own. Now today I have the same thing back again. I thought I felt the need to pee, but when I tried I couldn't go. But again, not much pain.
11-13-2013, 09:12 AM   #17
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Only the soreness around the stoma that's been there since the surgery - it gets worse right before something comes out, including gas, then quickly dissipates once the activity stops.

Did you just get your ileostomy?

This was common for me a few weeks after my operation. Anything from gas to small amounts of fecal output was very sore.
11-13-2013, 10:07 AM   #18
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Did you just get your ileostomy?

This was common for me a few weeks after my operation. Anything from gas to small amounts of fecal output was very sore.
Yep just a few weeks ago.
11-13-2013, 10:09 AM   #19
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Yep just a few weeks ago.
That's considered normal then. I don't remember exactly how long it took to go away for me, but as the stoma is less swollen, you'll get to the point where you don't even feel stool moving through it.

11-13-2013, 12:01 PM   #20
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I'm at over 2 months and I feel the stool moving. Hate the damn thing it feels so weird.
11-13-2013, 06:25 PM   #21
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Almost 2 years for me and I feel it all the time. It's not painful, but I am aware.
11-13-2013, 06:58 PM   #22
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Almost 2 years for me and I feel it all the time. It's not painful, but I am aware.
I wonder if it has a lot to do with the location on the stoma, type of stoma and size. And if the hole around the wafer is tight (I.e using a moldable ring).



11-13-2013, 07:32 PM   #23
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I always feel my output too, and I'm coming up on 4 years. Like 2thfairy said, it's not painful, but more of a pressure for me.
11-14-2013, 05:47 AM   #24
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Thanks for all the replies. The pain when the stoma's active is quite mild, so, while I hope it will go away, I don't think it'll be too big a deal for me if it doesn't.

I rang one of the nurses yesterday and she wasn't concerned. I've been able to pee a bit now, though it's quite painful for some reason. The nurse thought maybe because I'm losing liquid through the stoma, and have had a fever the last few days, that I'm dehydrated and that's why the problems peeing, though I'm not entirely sure that's right - I've been drinking an awful lot. She said if I get any severe pain to come to Accident and Emergency, but if not it will probably resolve itself like it did before and that as long as the stoma is producing something each day (and again if there's no increase in pain) then that's probably fine. I've been having fevers on and off since the surgery, but despite extensive tests when I was in hospital they couldn't locate a cause. (But they did confirm, amongst other things, that I don't have a UTI.)
11-15-2013, 11:35 AM   #25
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I'm feeling a bit better today. The fever's gone and I've been able to pee small amounts, but regularly, it's still hurting but nowhere near as much as yesterday (when I was a bit concerned I was going to end up having to go back to hospital again ). The stoma output is still predominantly in the evenings, especially right before I go to bed, though sometimes a tiny amount is produced earlier in the day or over night. I'm still only emptying a half-full bag usually twice in the evenings.
11-15-2013, 11:10 PM   #26
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The dehydration part doesn't make sense because you have so little output for an ileostomy, if it's not coming out in your stool or urine, it's still absorbing or swimming around in you. It's good to keep on top of hydration but with your current output I wouldn't be too concerned.
11-16-2013, 07:14 AM   #27
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The dehydration part doesn't make sense because you have so little output for an ileostomy, if it's not coming out in your stool or urine, it's still absorbing or swimming around in you. It's good to keep on top of hydration but with your current output I wouldn't be too concerned.
Yes that's what I'd been thinking too. The first time I couldn't pee was immediately after the surgery, before my ileostomy had even started working and I didn't have a fever then. The pain with urination is still there today. And for some reason I don't get the urge to pee like I normally would.

The episode I had directly after surgery, I was told was a side effect from the surgery. I've been reading and found the urinary retention after surgery does happen, and that it can cause lasting problems. So I'm worrying now that that's what happened - that the recurring episodes I'm getting now might be because that first episode of urinary retention has messed my bladder up somehow, though I don't know why the symptoms would be intermittent. I do have a urologist but I don't know when I'm next seeing him. The pain is only for the short time that I'm peeing and doesn't hurt the rest of the time, so it's not that the symptoms aren't bearable, I'm just getting concerned that having my bladder overly full is going to cause problems - that perhaps it might get to a point where I can't pee at all or that I get a UTI.

Sorry, I'm probably just worrying over nothing. All my previous surgeries have gone so smoothly, having the ileus this time and the unknown bladder problems have knocked my confidence a bit, because I was a bit blasť about surgery, having recovered so well each previous time - I wasn't expecting this. One thing I can't stand is having a catheter - I've had them before and had cystoscopies (camera into the bladder) and they were some of the most painful tests/treatments I've ever experienced and I passed out from pain every time, so the possibility of having to have more bladder investigations or having to have a catheter if my bladder won't empty on its own is freaking me out a bit.

I am still not regretting the surgery though. The ileostomy has improved my life so much already, and I can't get over how quick and easy it is compared to what I had to go through to have a bowel movement before. The output is still predominantly in the evenings, but it is sometimes producing a bit through the rest of the day and night now too. I'm emptying a half-full bag usually twice in the evening and sometimes once at some other point in the day - it was half-full when I woke up in the morning.
11-16-2013, 08:51 AM   #28
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I don't blame you on fearing the catheter but if it's needed you will be better off than letting your bladder get so full. Maybe your ileostomy has identity issues and thinks it's more of a colostomy
11-19-2013, 07:04 PM   #29
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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.
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11-20-2013, 10:21 AM   #30
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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!
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