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one more question re. perm ileo's

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Posted 9/12/2011 2:00 PM (GMT 0)
Hi there! I was wondering about timing of eating- for example, I wake up anywhere between 5:30-6:00am, have coffee, then don't eat until around 9:30ish. With an ileo, is this ok, or is it better to eat small meals more frequently? I'm wondering if I have breakfast at work, will my ileo suddenly go mental with output an hour later??? And will my morning coffee have the same effect- I rush to the bathroom now while drinking it, will it make my stoma start working? As always- Thanks!!!!!
Posted 9/12/2011 3:26 PM (GMT 0)
I think this is different for different people, so partly you'll have to wait and see.

I don't drink coffee, but I do often wait a while in the morning before eating. I am mostly working at home at the moment, so I have a lot of flexibility. On days I change my pouch, I like to wait until 11 am or so to change and then eat, as my output tends to be done by then. I usually don't start having much output again until 3 or 4 in the afternoon.

I haven't had anything like a lot of output after eating on an empty stomach -- I get some noises or air/gas sometimes when I haven't been eating for a while, but what you're describing sounds more like ibd symptoms, and it's really different. It might be hard to imagine, and it took me a while to get used to, but I don't have urgency in the same way that I used to. In the late afternoon and evening, I often have to empty several times, and it can seem like the bag is filling fairly quickly, but I never have to run to the bathroom like I used to. I sometimes go to a yoga class that's an hour and a half in my high output times, and I often want to go to the bathroom in the middle of it, as it's uncomfortable when the bag is getting more full -- but I never have to run, I can wait until a good breaking time for me to do it (usually a pose I can't do, due to my wound).

I am eating more than I should be, it's just so exciting to be able to eat so many things. When and if I stop that, I won't have to empty as much....

Probably the coffee will speed things up though, as caffeine does that....
Posted 9/12/2011 5:11 PM (GMT 0)
I'm glad you mentioned yoga- I do yoga too, & have been wondering about it with a stoma! So the output doesn't necessarily correspond to eating? It's so confusing, I think I'm over-thinking it!

Posted 9/12/2011 5:42 PM (GMT 0)
I am very careful with belly down poses -- I was careful w/them before surgery too, as they often weren't comfortable. I have this butt wound that's taking forever to heal (not a common complication) so I am modifying a lot of sitting postures to be standing postures and avoiding things that spread out the wound. I'm only going to a really gentle restorative class now, where we use all kinds of props for everything. I think after you're healed, you can do most yoga. Not sure how old you are, but I think I'm done w/the high energy kinds of yoga, just doesn't seem to be what I need....

Yes, output does correspond to eating, but I'm still working it out, and it's a little complicated as eating some foods together is different than eating separately etc. Definitely more food =more output for me. But your guts produce bile and gas and such even if you aren't eating. Some food moves through more quickly than other food -- higher fiber slows transit time. After surgery, I would stop having output earlier in the morning, but now that I'm eating more variety, it often takes dinner and other later night food longer to come out. The lull from late morning to late afternoon is because I didn't eat anything all that time I was asleep....

You probably are over thinking it, in the sense that it's not something you have to work out now. But it sounds like you're dealing w/the very normal anxiety that anyone has regarding surgery by trying to get as much info as you can. I think that's healthy .... just know that you might have to modify when it's the real deal.....
Posted 9/12/2011 6:03 PM (GMT 0)
     Eva, it's been over a year since my surgery now but I never changed my eating habits or times I eat.  I had to learn to drink more because I was never much of a water drinker.

     For awhile following surgery you will find your output to be quite a bit.  At least I found that to be true.  It takes a good six months for things to get back to normal and everyone is different.

     Some people have been told to stay away from popcorn, corn and peanuts.  I was never much of a popcorn fan but I love my corn on the cob.  This summer I decided to try an ear of fresh Jersey corn..mmmm.  No problem.  I just made sure I chewed very well.  I also eat nuts occasionally but chew well.

     I don't do yoga but I walk as much as possible.  Your surgeon will tell you to walk the day after surgery.  My surgeon was a big advocate of walking.  You will know your pace.  Don't push yourself.

Posted 9/12/2011 6:38 PM (GMT 0)
right- I'm not a fan of the hardcore yoga workout, I tend more towards the relaxed, mental, low impact physical yoga! I'm 40, soon to be 41, & my days of exercise are basically over! If all goes as planned, I should be able to walk to the bus stop to meet my daughter after school, which will get me up & going daily. It's not far, but I can always add to that. I'm dreading the gas build-up though, I feel like such a gas-bag as it is, with the UC!
Posted 9/12/2011 10:13 PM (GMT 0)
I didn't have tons of gas, barely an issue at all compared to w/ibd.... doesn't smell, doesn't make you have to run to the bathroom etc... but people who have gas problems have reported a lot of success with gas-x.

You might just find that you will be able to walk a lot more than to the bus stop, and you might want to too. It's amazing how you can get used to being sick, at least I did.... I was reading some old journals today, just a thing I do at the end of the day, writing the best and worst thing that day, and some thing ordinary, and I was just wanting to cry reading how sick I was (and the best things used to be like, "only eight bathroom trips" or "finally stopped taking flagyl," not things like last week, "gorgeous day, went apple and peach picking.".....)
Posted 9/13/2011 2:04 AM (GMT 0)
you can still exercise!  lots of people exercise when they are 70!

and yoga should be fine, i don't do yoga, but some of the stuff on insanity requires flat on the belly, and i do all of them.

as for eating, it just sort of depends, at first there will be lots and lots of gas and output, but it will lessen as time goes on.

It depends on what i eat as to how quick it comes out.  Like pizza is out before im finished eating, a sandwich takes a while. 

Don't worry about being a gasbag!  as long as you don't let yourself get hungry, or eat a lot of the major gas foods, you shoudl be find

Posted 9/13/2011 12:27 PM (GMT 0)

Eva Lou said...
I rush to the bathroom now while drinking it, will it make my stoma start working?

No more rushing... ever :) If your bag does fill up between your coffee and 9.30ish, you won't be running to the loo. You'll be walking there at your convenience to empty.

I get up and first thing I do is empty because my bag is full from the night before then I have brekky (bowl of cereal) around 6.30am. I get to work around 8.15am. Don't have to empty usually till around 11am. Next empty is around 4pm. Leave work at 5pm (quick empty before I leave but only cos I'm in there to empty my bladder which, as I get older, usually won't last till I get home - I could get away without emptying my bag but might as well whilst I'm in there), get home around 6.15pm, empty again for good measure (cos for sure I'm going to have a couple of kitties jumping on my tummy when I sit down to relax at my computer and it's best to have nothing in there when they do lol) then one or two more empties before bedtime.

I just have 'normal' meals - breakfast, lunch, afternoon tea and dinner.
Posted 9/14/2011 12:49 AM (GMT 0)
Eva,

When my ileo was new, by the time I swallowed my last bite of a meal, the meal was literally already in the bag. Then I emptied and moved on with my day.

Since I have become an "adapted ileostomate" the output has slowed way down as it is supposed to after about 6-9 months or so. I can eat a small meal, then in awhile go empty. BUT at first, I had to literally eat sitting next to a bathroom! I actually sort of liked it better that way as I always felt empty and ready to eat again. Odd, I know, but I felt my best then.

Good luck, Rosemary
Posted 9/14/2011 12:54 AM (GMT 0)
Eva,

Yeah, some food seems to race ahead of other foods. I'm still trying to figure it out and it has been 4 years for me. Yes, we have to drink a TON of water. I like flavored water, but stay away from too much sugar or fake sugar as that really speeds up output.

Rosemary
Posted 9/14/2011 2:02 PM (GMT 0)
I personally think I drink a lot of H20 as is, but I'm sure it's nowhere near enough for an ileo! Isn't is somewhere around 2 liters a day? And does anyone dilute Gatorade with water, & drink that thruout the day, as an added precaution against dehydration? It sounds gross, far too much like a colonoscopy prep for my taste, but if it helps..... I'm thinking I ought to buy myself a super sized water bottle prior to surgery, & make sure I drain it daily.

Posted 9/14/2011 7:03 PM (GMT 0)
You will just have to wait to see how your body adapts, since everyone is a bit different. For the first 2 months after surgery, I had a lot of liquid output shortly after eating. It seemed like I was emptying every two hours and getting up multiple times at night. Just when I started to worry that it was always going to be like that, it totally slowed down. At around 5-6 months post-op, it got to the predictable point that I am now at. I consistently empty 5-6 times a day and it is generally an applesauce-like consistency, though once in a while it still gets liquidy at random times. I don't worry about it. After I eat breakfast at 6:30 a.m., I usually have this crazy lull where I don't really get output until 11 a.m. Then I have to empty a bit more frequently in the afternoon and evening. Still, there is really no urgency in doing so... I can wait until it is convenient. I can also now go all night most nights without emptying, though my pouch looks like a blimp from gas and is usually half full with output by the morning. I am just lucky in that my pouches stick really well and I don't get leaks overnight. Plus I think when I lay on my side, the pouch sort of supported a bit by the bed so the weight of the fuller pouch doesn't tug down like it would when I was standing or walking.

I was also worried about the small meals thing, since that isn't very convenient with my job or lifestyle. I used to always go trail running after work, and I was worried I would have to skip that and rush home to eat dinner by a certain time. That has not proved to be necessary. My output pattern seems really similar whether I eat small meals throughout the day, or three normal meals. Therefore, I have gone back to my pre-surgery breakfast, lunch and dinner routine. Also, I get the same amount of output overnight whether I eat at 5 p.m. or 9 p.m. It doesn't make sense, but that is how it has turned out for me. So, I don't stress about dinner time either. I frequently eat around 7 or 7:30 p.m. with no problems and sometimes eat dessert right before bed.

I drink a lot of water. I used to drink 2 liters a day before surgery, as I live in CO and it is very dry here. Now I drink 3-4 liters a day after my ileostomy. When I am out hiking all day in hot weather, I have guzzled up to 8 liters in a day. I just make sure to eat lots of snacks so my electrolytes and salt levels are maintained. One of my standby drinks is water with just a bit of the powdered Gatorade mix added (so it is about half strength... otherwise I find it too sweet). I also love to drink water with just a splash of fruit juice added. Sweet drinks and fruit juice do not give me watery output like they do for some. I usually start my day at work by drinking a 24 oz. mug of herbal tea. I like V8 and the V8 Fusion juices too.

I laughed regarding your comment on the Gatorade and colonoscopy prep. For what was to become my final colonoscopy when I was in the midst of a severe UC flare, I had to drink the prep that you mix with lemon Gatorade. I was already feeling so sick with extreme diarrhea and was horribly nauseated from the UC, and drinking that stuff on top of it all was almost unbearable. I remember counting the minutes until the night was over and I could go in for the scope. I was excited for the sedation just so I wouldn't feel so ill for a while. I thought I would never be able to drink the Gatorade again after that horrible night... but bad memories fade and now I like the stuff again.
Posted 9/15/2011 5:37 AM (GMT 0)
oh, blueheron your story of final colonoscopy is horrible, and familiar! That is one of the huge pluses of not having a colon - no more scopes!!! I'm like most others, after a few months of lots of output my system settled down. I have the morning mini-blimp too, but don't have to empty in the middle of the night. I'm a member of the itty-bitty bladder club, so really, all I do is empty the pouch when I use the bathroom six or so times during the day. The biggest difference is the lack of urgency and the control you'll have. I remember 20-30 trips a day before surgery for months on end --- I wasn't able to work and was basically a slave to my home. I don't miss the near misses and huge accidents of those days!
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