HealingWell
Search Close Search
☰

longtime ostomates- help!

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/27/2015 3:01 PM (GMT 0)
I'm not exactly longtime just yet, but coming up on my 2 year mark with a perm end ileo. My output schedule has changed drastically the past month or so- it used to be pretty constant, I'd empty 4-6x a day, not a ton, but stuff. Now, I go all day, basically, without having to empty. My bag fills up to the max overnight, so I empty right when I get up, then 1 more time before I go to work. Then, I don't have to empty again for another 7-8 hours, & maybe one more time before bed. So, every night, I start to freak out & think "Is it blocked?!?!". There's no pain, no symptoms of blockage. And of course, overnight things start moving. It's as if my small intestine has truly taken over, & is behaving like a "normal" persons colon- you know, get up in the AM, have a decent BM, then you're fine for the day. Does anyone else find this to be the case? I don't mind, but I have to get over that blockage fear! It's actually a nice schedule!
Posted 12/27/2015 3:20 PM (GMT 0)
awesome you're coming up on 2 years EL ! man, it seems like just yesterday -

sounds to me like a good thing and you just have to get use to enjoying it - but i understand your concern - wish i had an answer for you -

hope it turns out to be an ok thing !
Posted 12/27/2015 4:23 PM (GMT 0)
I'm not saying there's anything to be alarmed about, but that seems odd to me. Peristalsis slows down when resting. When I had an end ileo, I could stay in bed 10-12 hours without having to get up and empty, because things slowed down so much. Once up and moving, the peristalsis would gear up (does now with a loop), and 2 or 3 toilet trips follow in quick succession. Probably just a physical quirk you have, but definitely contradicts what I know of intestinal behaviour. To be honest, if you feel okay, I wouldn't worry. I know I'd be over the moon with that sort of schedule!
Posted 12/27/2015 8:24 PM (GMT 0)
That's just it, I feel fine! Aside from the mental freakout, which turns out to be all for naught. The ileo works fine, output is good consistency, etc- just slow transit! I don't eat much, truthfully- I feel like I do, but when I look at the  amount of food I consume, objectively, it's not massive. Thinking back, overnights have always been my "busiest" output time, since right after surgery. Every AM my bag is full. And I don't think an ileus just spontaneously occurs, 2 years post-op. It's not that I have NO output during the day, I do get the liquidy stuff, some thicker stuff... just not enough to necessitate emptying much. I thought about asking my old GI, or the WOCN I used... I may still, but honestly- as long as it's working & nothing is "wrong", why look for trouble? I am curious though, if others have a similar output schedule.
Posted 12/28/2015 1:27 AM (GMT 0)
I had an ileostomy for two and a half years and that never happened to me. My bag never filled up that much overnight. I'm not sure if I could have gone 7-8 hours without emptying, but I could usually go a few hours - my output during the day definitely decreased after the first year or so. I reckon it did take up to two years for my small intestine to become as much like a 'colon' as it was ever going to.

You deffo don't have an ileus. They are excruciating. An ileus gave me one of the worst weeks of my life.
Posted 12/28/2015 2:12 AM (GMT 0)
I've had Ileus 3 times following surgery now. You would definitely know what it was if you had one, you wouldn't be able to ingest anything for starters. Do you eat/drink or take any medication before retiring to bed that may be speeding up transit over night?
Posted 12/28/2015 1:18 PM (GMT 0)
no meds before bed- the occasional Ambien, but I just started those. I do drink wine in the evenings- not every night, but most nights! A glass or 2, tops. This AM, the bag was full, but not to the max- it sort of depends on how big my dinner is. I suppose I'll keep an eye on it, but barring any sudden pain, etc- I'm not too concerned! I'm also a bit lazy about emptying- I tend to wait as long as possible.
Posted 12/28/2015 10:46 PM (GMT 0)
My "output schedule" settled down to a lot like it was before surgery. I have output in the night and in the morning, and then at about 10 am it slows and starts up again mid afternoon. More output in the early evening too. Mine depends a lot on what I eat -- how much food altogether and how much fiber -- and I wonder if you're eating very low residue food (although if you're vegetarian and dairy free, that's harder to do). When I've had other issues and had to eat a lot of white food, it's striking how much less I need to empty. I often try to eat a low residue dinner, just so I don't have to empty much in the night.

I also wonder how much you're drinking.

As one who has had many blockages and an ileus once, I second SL. You would know it if one of these was the issue -- you'd be nauseous, in pain, and later vomiting.

Sounds like you've got a good thing going! But not such a bad idea to check w/your GI, just for peace of mind...
Posted 12/29/2015 12:58 PM (GMT 0)
I am vegetarian, but not dairy free- I eat everything, pretty much! I drink lots of water thruout the day & night... lunch is usally a salad, dinner generally some type of pasta or grain w/veggies, or fish & veggies, a carb on the side. My output is like yours- a lot at night & in the early AM, then slows way down 'til around 4:00ish. Still haven't decided if I'm going to check with my GI or WOCN.... I can't really complain, so.. But glad to hear from those of you who have had an ileus, that I apparently do not!
Posted 12/29/2015 3:27 PM (GMT 0)
If I were you, I wouldn't worry much at all. My output schedule is pretty similar to yours, and other than having to get up sometimes at night to empty and worrying about a night time blowout (only because it happens to me), I haven't given it a second thought. I almost always fill up overnight, maybe have a little more output once I'm up and moving, and after that it's a good 6-7 hours before I have enough to really need to empty. My system was very active overnight when I was sick too, so I guess that's just how my body works.

While I'm not a vegetarian, my diet is much heavier in fruits/veggies/whole grains than meat, and I avoid processed food as much as possible. I eat dinner fairly late and snack a good bit in the evenings/nights, but even when I eat earlier, my system operates on the same schedule.
Posted 12/29/2015 5:39 PM (GMT 0)
thanks, you guys! It's a relief to know others have similar schedules. And a relief also, to not deal with UC anymore!
Posted 1/31/2016 4:48 PM (GMT 0)
    Hi Eva!  Been awhile since I've been on the forum, computer problems rolleyes .     It's been 5 1/2 years for me.  Take note of HOW much you eat and what time you eat.  I can sleep through the night and when I wake it is only about 1/3 full.  During the day I empty about 4 times.
Posted 1/31/2016 6:45 PM (GMT 0)
Hi Eva Lou! great to hear from you and fwiw, somewhat similar experience for me. I am pretty much never on these boards any more because life is so normal for me with the perm ileo, essentially like life pre-UC other than the rather minor inconvenience of slight adaptations, changing my wafer every 4 or so days (which takes a few minutes from beginning to end). I rarely empty overnight myself, unless I get the urge to pig out just before bedtime. But since I normally pee anywhere from once to two times per night, it wouldnt be an issue if I happened to empty then. I will come up on my three year mark in late spring. ileo works like a charm. i essentially eat everything and anything to my hearts content without issues. I am aware of foods that will liquify or increase output, notably very sugary foods like sugary deserts and large qualtities of chocolate, which I try and ration appropriately, not least for general health. In my UC days I controlled my symptoms somewhat via low carb eating, and I try and maintain a low carbish life now for general health, ie glycemic health, but treat myself as much as I want now when I feel I deserve it lol. All the best into your third year UC free.
Posted 1/31/2016 8:00 PM (GMT 0)
My emptying routine is much like yours. I've had my stoma for more than nine years now and depending on how much and when I eat and drink I am able to time the emptying process. I eat my major meal mid-afternoon every day and firmly believe in the benefits of two 5 oz glasses of red wine every night. Life is good.
Posted 2/1/2016 5:22 PM (GMT 0)
hi everyone! So nice to hear from all my old friends- Pro, I've been thinking of you lately- glad all is well! Once again, the ileo has changed a bit- well, the output. It's still most active later in the day & overnights, but the bag doesn't seem as full in the AM's as it did a month or so ago. I love my red wine too, Tom...!
Posted 2/1/2016 8:43 PM (GMT 0)
Pro - I've been wondering how you've been doing, bro :p

It's great that life is back to pre-UC normal for you. I had a reversal six months ago, which has largely been a disaster. While life with my ileostomy never felt like pre-Crohn's in all honesty, it was a hell of a lot better than what I have now. The way I feel with so-called "mild" Crohn's, I can't help feeling that an ileostomy would be better than my current setup with zero inflammation.
Posted 2/2/2016 1:43 PM (GMT 0)
what's going on with you these days anyway, NCOT? Just dealing with "mild Crohns"? Are you on meds or anything? What a f-ing drag... I do feel good these days, 22 months post-op now.... I think the thing that gets me is how much more energy I have, overall. What exactly is the problem with the reconnect- are you going too much, having pain, etc? It sounds awful.
✚ New Topic ✚ Reply