A day in the life of a K-poucher Part II

Part II - decided to publish in two parts because it was getting too long.

day 5

Breakfast: 6am coffee and oatmeal

pouching before heading off to class 6:45am consistency of liquid peanut butter. What the heck?? All I can think is it must be the remains of the black beans I had in my lunch yesterday, but, there wasn't a ton of them. And, I didn't eat any peanut butter.... Also, a bit of black bean clogged up the cath but not enough to make me stop, dig it out and start again (thankfully). In the bathroom about 7-8 minutes. I know I'm not completely empty "scraping the bottom of the barrel" but empty enough I should be fine until after lunch.

Lunch: 1pm went out with a friend had chix noodle soup, bread and an apple (no skin)

pouching about 3:45 when I got home and feeling full but not desperate. Good consistency but still a little sluggish. Still, out in 5 ok.

Dinner: 6:15pm baked potato (no skin) and turkey sausage

pouching at 7pm. ugh. fiber everywhere. what is it? apple? carrot? I dunno. All I know is I'm working the cath, moving it in and out, pressing on my belly, trying all the tricks. *sigh* I can't see any chunks, nothing is really clogging up anything its just... I dunno. apple I guess fibrous micro-morsels of apple. 10 minutes and i'm done just because I'm sick of messing with it. Should all come out by bedtime. bleh.

Empty b/f bed. 9:30 Amazingly enough the addition of potatoes at dinner did not make it worse. In fact, things went a little better, still fibrous bits of potato and a few black bean stow-aways. Not a huge problem, irrigated a couple of times and feeling nice and empty. still took about 10 mins. *sigh*

day 6

Breakfast: 6:30a coffee and cream of wheat

Pouching b/f class at 7am. Looks like potatoes are not the enemy - hooray. However, the skin around my stoma is looking a little red and angry. I put some stomahesive powder on it, and I will make sure to change my nursing pad (its what I use to cover feza) every time I empty for a while. In and out in 5

Lunch: 1pm grapefruit, spaghetti squash, ham yogurt (yes, I know I eat weird :oP )

Pouching at 2pm not really feeling the need to empty but I know I will later and don't want to mess with it at school. Also, meeting a friend for dinner after class so....

perfect consistency. Peristomal skin still not looking so good so I put some anti-fungal powder on this time. That usually clears things up in a day or so.

Dinner: 5:30 Chicken nuggets and chicken noodle soup

Home and pouching at 7:30p. Feeling very full and the invisible spaghetti squashes are causing a traffic jam. Not bad, only slightly annoying but I chewed well so not a huge problem. In and out in 7 or so.

Pouch b/f bed pretty good consistency despite the veggies. Irrigated a couple of times and out in 5-6 mins

tomorrow I'm headed to Cleveland Clinic for my 6 month scope so no breakfast :( and I'll be forced to empty in public restrooms *boo*

day 7

Breakfast: 7am coffee, water

Pouching around 8am and pretty watery with bits of carrot (i never remember to chew my soup :op). I irrigate until the return is pretty clear. I'll empty one more time up at CC before my scope just to be sure its as empty as it can be. Leaving in 30 mins. At least with no rectum there is no enema :/ Peristomal skin looking better today but I still put some powder on.

Ok so I get to CC and in the pre-procedure area, tell the nurse I need to empty my pouch one last time b/f the scope. Go to the bathroom start to unpack my gear when I realize that I have no Lube to put my cath in. This is the bag I took on an airplane back in Dec so of course I had to remove all the little bottles of goo. *sigh*

Well I figured, stoma is probably wet enough, I hear that people intubate w/out lubricant, I'll give it a try. Well I can advance it up to the first hole but no farther. And my stomach is so tense 'cause I'm stressed about the procedure and I'm stressed about not having any lube and its just not going in. Pull it out, start again. Nothing. Try again, Nope. Not getting anywhere and so now I'm even more frustrated and its really really hard to relax your stomach muscles consciously when you're nervous/upset/frustrated.

So I just started praying 'God you know I'd really like to get this last little bit out b/f I go in there, please help me to relax!' And hooray I got it in! Not much came out but I figure, well better than nothing.

Oh side note here: I intubate standing up. I can't seem to do it while I'm sitting. Sometimes I'll squat or kneel in front of the toilet, sometimes I'll just use the sink (depending upon where I am).

So I went and got my scope and it really went pretty well. It didn't hurt as much as last time though it did get pretty intense for a while. I'm not much of a verbal expressor of pain so it was interesting from a purely medical standpoint how my body reacted to the stress since I was awake. BP went from 97/71 pre-procedure to 131/92 immediately post procedure and I broke out in a cold sweat. I say cold b/c I was FREEZING in the procedure room. But the nurse got a towel for my forehead. But oddly, a couple of hours later when I was being checked in for my office visit the nurse took my BP and it was 84/56. "Is it normally low?" yes, but not that low. Well, probably because your body is still recovering from the sedation of the scope. oh. well I wasn't sedated. Really? Hmmm.

So after scope went and grabbed a bowl of curried lentil soup for lunch about 11:45. Emptied my pouch about 1pm feeling a little bloated no surprise b/c of the air in there. Had to empty in a public restroom on the GI floor, but was able to use the handicap stall so had plenty of room for my stuff. Cath in OK (thankfully I managed to procure some lube from a helpful nurse) and output ok except for the gassiness.

Believe me, when I know I'm going to be emptying in a public area I chew the life out of my food, even soft veggies in soups. Cause you really don't wanna have to mess with a clogged cath when you're squashed in some foreign stall trying to be as quick as possible. Really just going for relief instead of "empty" at that point.

So awesome news I don't have to see the GI again for a year -- WOOOHOOOO and the pouch and valve looked great. He said I was a k-pouch poster child haha.

Oh, on the kind of bummer side he said majority of complications with the k-pouch he sees are due to WEIGHT GAIN. So, don't gain more that 5 lbs he says.

5 lbs? *sigh*

Now you can see while I live off cottage cheese and squash....

Ah, being a k-poucher, well it does have its challenges, but I'll take it any day over an ileo.

A day in the life of a K-poucher

Sooooo I was looking back through some of my old posts and doing some thinking about what made me decide to get a k-pouch and all the research I did. I read tons and tons of forum posts and blogs and other such things. They were pretty helpful and instrumental in me making my decision because I really felt like I had a pretty good idea of what I was getting in to. And truly, I did because nothing that has happened since has really been a surprise, which is a good thing.

I thought I would give a day by day record of what I'm eating, how often I'm "pouching" (and by that I mean emptying my pouch) how long it takes me, what the output is like etc. That way, if there is anyone else out there wondering what the heck this catheter-crazy life is like has a better idea. So word of warning: I will be talking about poop. If that turns you off, better stop reading. But if you, like me and any other j-poucher or ileo out there has no problem with poop-talk then you're ok ;)

I generally empty 4 times a day unless I have a lot of gas or something doesn't agree with me. And no urgency. Often I'll empty proactively if I know I'll be away from home for several hours. Oh, and right now, I don't work, I'm a full-time student

day 1

Breakfast: coffee at 6a and egg around 7:30a

pro-active pouch before leaving for 9am class. Right now I don't feel the need to, but I may in an hour or so, best get it done so I'm not need during class. Last night's dinner was Quinoa w/ black beans, corn and tomatoes. I did chew it really well so output is good and no need to irrigate. Done in 5 min.

I think its funny how I get different layers depending upon what/when I've eaten. Can totally distinguish between dinner and coffee both exiting at the same time.

Lunch: Grapefruit 12noon, chix noodle soup (from a box) yogurt and cottage cheese. 1pm

More Coffee. 2pm

Pouch feels full and totally ready to empty before going back to class around 2pm. Pretty watery with lots of grapefruit bits but no clogs. I irrigate twice just to try and clean 'em out. 5 mins.

Since its so watery I need to be sure to drink plenty of water this afternoon.

Dinner: chili 6:15pm

pouch about 1 hour after dinner - feeling pretty full: consistency pretty average and doesn't need much coaxing to get out. about 5 mins

pouch before bed starting to feel full again. a little thicker and had to work the cath a little bit to get it to move (soooo slooooow) and by 'work the cath' I mean squeezing it produces a little suction and moving it in and out for pockets of air etc. Irrigated a few times to get that 'empty' feeling. Took about 7-9 minutes tonight.

Early day tomorrow - I have clinical so up at 5:15am

day 2

Breakfast: 5:45a Coffee and oatmeal

Pouching: sludgy - must be due to beans in chili and its moving crazy slow so working the cath and irrigating a few times. Why is it always when I'm in a hurry this takes longer than I want? 8-9 minutes

Lunch: 11a applesauce, cottage cheese and yogurt

I intentionality eat small lunches on my clinical day because I don't wanna have to empty til I get home.

Home and Pouch at 3pm - little gassy and feeling pretty ready to empty by the time I get home. output is good, in and out in 5 min.

Dinner 5pm Kung Pao Chicken with rice (yum!)

Pouching at 6pm and feeling full: pretty liquidy output o happy day. in and out in 5 no irrigation.

Pouch b/f bed 10pm: pretty liquidy and no problems but I irrigate once or twice b/c I like to feel empty when I go to bed.

day 3 (hooray for saturday)

Breakfast: 9a coffee (of course) oatmeal, pumpkin

Pouching at about 10:45a and feeling full. Not happy. All that rice and veggies coming back to haunt me. I really did chew it well but its just like a traffic jam. Cars fit fine until there's too many of them :( Irrigate, irrigate, irrigate. bleh. 10 minutes or so. I suffer for my stir-fry.

Lunch: 12noon spagetti squash and leftover quinoa w/ black beans, corn and turkey sausage.

pouching at 3pm. output slightly thick and veggie traffic jam but no clogs. had to irrigate a few times 8-9 minutes.

going to my niece's first birthday party tonight.

Dinner: 6pm pizza and steamed broccoli and cauliflower

Came home around 7:15 and couldnt' wait to empty my pouch - feeling so full and bloated. Thankfully cath in ok and stuff out ok 5 mins tops and I'm feeling a lot better.

Empty around 11pm right b/f bed. Lots of broccoli bits but nothing to cause a fuss because broccoli is small :)

day 4

breakfast: 9a coffee and cream of wheat

Pouching b/f leaving for church 10:15

Lunch: 1 pm Chipotle burrito bowl. (beef, beans, rice)

pouching around 2:15 and pouch feeling pretty full. Liquidy and no real need to irrigate in and out in 5 hooray

Dinner: 7:15pm homemade buffalo chicken pizza (yes, I know, Ihad pizza yesterday. But this is SO much better than take-out!) and a Sunday night tradition :)

Pouching around 8:30. Feeling full and not yet uncomfortable and since I'll empty again b/f bed might as well go ahead a get it done. A bit sludgy because of the black beans at lunch had to irrigate twice but otherwise OK. no clogs so I chewed well :) about 7 mins.

Pouching at 10:30 output good irrigated once for that "fresh pouch" feeling out in 5.

to be continued....

My 6 month scope coming up

Well, I'm just 9 days away from my 6 month -pouch scope.

And I'm nervous. I always am, and as many times as I've had it done I shouldn't be but...

It hurts. A lot.

And I could have sedation but that would involve starting and IV which is also horrible since all my veins are blown. And for a 10 minute procedure it just seems like overkill. And of course if I'm sedated I have to have a driver which means somebody has to miss work (my husband). Then I feel hung-over and loopy the rest of the day. All to avoid 5 minutes of pain - only 5 mins or so because it doesn't hurt the entire time. Just when my pouch starts to be full of air from the stupid scope.

Not really worth it.

I'm not nervous about the biopsy, or even if my pouch is clean because I don't really believe I have Crohn's disease.. but thats a whole 'nother story.

Anyways. Its not for a week but I'm thinking about it off and on every day now and I just feel better if I can tell someone.

I'm nervous. I hate it. And, I wish I didn't have to go.