Yes, another partial obstruction. Chris didn't even eat that many, stomach started to hurt, skins were coming out of the tube in pieces, output got very thick(White rice?)Tubes not going in easily, frustration and anger. Of course, the previous nights alcohol consumption didn't help (dehydration?)and a bit of popcorn! but who wants to admit that could be the cause, not my son!
Probably a combination of the 3 and stress/amxiety.
Finally got a medina curved 30 french in and connected it to an extension tube and then to the foley and went on constant drain for the night to stop the constant intubation. Irrigating it and seems to be a little better today but leaving the cd in for the day.
So much for holiday weekend! Good thing no school or work tomorrow, another day to rest.
Good thing I have a small medical supply company in my closet!
Breathe, exhale.

This message has been edited. Last edited by: "Holly2",

Wow, He's really having a tough time huh?
Its kinda funny you should mention that because I love black beans and rice and have eaten it twice with very little difficulty in getting it to come back out. Of course it takes me 30 minutes to eat a bowl because i chew it to death but to me its worth it to eat something I love so much! I haven't tried popcorn though, too chicken. And hearing Chris's struggle doesn't make me keen to try it.

Hope things settle down

--
katie

I have often eaten black beans and rice, for many years. I don't recall it ever giving me any difficulty I was aware of, except sometimes a bean that wasn't chewed gets stuck in the catheter. Of those times over the last almost 3 decades I have had my K-pouch when I have had partial obstructions, none of them were ever thought to be from food; always it has seemed they were from adhesions. I have eaten totally undigestable food and not chewed it well, but as far as I'm aware, the only effect has been that I would have a hard time intubating because it would stop up the tube and my normal 5 minutes to empty the pouch would turn into 20 minutes or longer every time for the next day or two until I got it all out. I'm so sorry your son is having a rough time of it. Hopefully, as his pouch continues to mature, it will gradually more easily handle fibrous foods or foods that cause thicker output?

I'm so very sorry Chris is having another problem! It must be much harder to be young and adventurous and yet deal with a k-pouch.

I'm much older and kind of wary of what I eat. But I wouldn't want my young son to have my personality. K-pouches are limiting and we don't want our children to feel limited in any way ... we want them to be free to enjoy life (and black beans too!).

I guess that gradually Chris will know what is best to eat in the long run, and what is worth a potential inconvenience (or worse) and what's just not worth it.

Life isn't fair, but I try to remember that lots of people of all ages deal with limitations on what they can eat--celiac disease, diabetes, or just food allergies affect lots of young folks and some old people must limit salt, fat, or calories.

I just hope Chris can stay healthy so he can enjoy a beautiful and successful future.

Hi Holly, Chris,
Yes beans are a real problem for most people. A few rules of thumb. They must be really well cooked...almost mushy, which breaks down the fiber of the skin, try to spit out the skin when possible or just mash them in your plate and push the skins aside. I have the same problem with grapes ( raisins!), so in order to enjoy them without the consequences, I peel them and make a game out of it for myself ( and my grandchildren).
I have been eating popcorn for years and have much more succes with the microwave kind then the home made or airpopped. The microwave ones seems to be more 'tender' thaen the others.
My usual trick is to never eat this type of food with other elements of different catagories. I eat popcorn alone as a between meal snack, no fruits or protiens around it...better to encourage full digestion and less residue. It works great but I must be strick with myself ( something that I am really bad at! )
I eat all sorts of beans and fiberous legumes and vegetables with no consequence most of the time bu twhen it does clog...all hell breaks loose. By the way, I honestly believe that too much salad and popcorn is what precipitated my prolapse. The tube was over clogged and I had to yank out large packets of fiberous stuff and at each yank, I think that I loosened/stretched the opening.
So please Chris, be very careful, especially in the first 6 months, it is essential. Don't foret I wa 18 when I had mine done, and I really do understand the anger of restrictions.
Sharon

not to be rude, but i really don't understand why its so hard to not eat things (especially in the beginning)
i mean, whats so difficult about not eating popcorn? or drinking to excess? i guess i understand if you really really REALLY just HAVE to have something, like beans and rice, (it is pretty tasty.) you do have to be aware of consequences.
but why do we always hear about his bad eating choices? granted, i have yet to eat a salad. but i eat lots of other stuff, and chew ridiculously, and stay as hydrated as i can.
it's a small price to pay really. and i do not miss popcorn whatsoever. when i go to the movies and i absolutely NEED something from the concession stand (which honestly, it's better for my wallet if i don't) i'll have nacho's. just as indulgent. if not more
i sincerely hope he figures out what is worth it to him, but in the meantime maybe he will realize the anguish and stress that it brings you as well being his parent.
i'd never want to knowingly put my mom through ANY more stress than she already has been with me.
good luck you guys.

Becca, Not making excuses for his behavior, however, you are older and more mature. Chris has been alone in his room for 4 years. He is trying to fit in, make friends, etc. He makes poor choices. His biggest problem is not chewing which he has yet to get used to. He didn't eat but a few pieces of popcorn and a teaspoon of black beans. That really wasn't the problem as much as the dehydration from alcohol.
I don't know what it will take for him to really get it. I just hope it's before he has an ostomy to contend with.
Even after 20 years with a j pouch I still forget ocasionally and eat something that causes me grief with frequency and I deal with it and say please remind me not to eat that.
Some of us are just better at changing than others.
We both loved the calendar!

So he did something foolish and he learned from it for now. We all have done or eaten things that were not a good idea. I know I have and sometimes still do. The alcohol thing, suggestion, he should try orange juice, cranberry and vodka. It doesn't dehydrate you and keeps things very liquidy. I have never had a problem and I go out a lot for work and with my friends. He's just acting like a guy thats trying to be like other guys his age.
karmen

Thanks Karmen. I know he is acting like kids his age. He just needs to be more aware.
He puts himself in very bad situations. Someone at a party actually threw his bag in the trash with his cath and syringe!He had to dig through the trash to retrieve it. Lucky no one took it out yet!
He didn't drink this past weekend and went to a party and still had a good time. He realizes he doesn't need to drink.

Hi Holly,
We were all 18 once ( I hope! ) and did silly things, but not all of us had a pouch at that age. I did and lived through the dating nightmare of trying to figure out which 'one' wasn't going to run screaming out of the room when they saw the stoma for the first time, not to mention all of the scars! I dealt with the cravings for food that 'everbody else was eating' and to be, do and act like the 'others'. I didn't do such a great job at it, copped out and got married to the first one who accepted 'the hole in my abdomen'.
I have since learned ( 28 years later ) that to think before you jump doesn't make you weak or strange or well anything other than prudent.
We each have to learn, and yes, Chris will too, hopefully not to the detriment of his pouch.
No one can do it for him, and yes, there will be lots of mistakes...let them be small ones...and he will get through them all... we did...didn't we
Sharon

Why does he carry a syringe when he goes out at night? I know I'm new to this but I irrigate before I go out for the night and only carry a catheter with me. Being single in NY, we go out a lot either with my girlfriends or work parties. Would he ever consider getting one of those fanny belts around the waiste. My friend just bought one a the Gucci store and it looks great, very chic! A suggestion.

Karmen,
Chris usually irigates every time he intubates as was recommended by Dr Fazio and Dr Shore.
When he goes out, he never knows if he's coming home!
Better safe than sorry as he has already had the bad experience of a slipped valve one year after k pouch creation and another scare when he coukdn't get the cath in which involved much stress and a 2 hr drive to St Petersburg.
We are not fortunate enough to have anyone closer that could manage anything with the k pouch, including Cleveland Clinic Weston. They do not have the necessary tools for k pouch issues.
Sharon,
Chris will be 21 in 10 weeks!
Thanks, I know all you said to be too true!

I'm sorry, I forgot what it was like to be that age. He is lucky to have a mom like you, so knoledgeable and informed about his situation.
Karmen

No reason to be sorry.
He has had his issues and he is stubborn like the apple falling from the tree!
He is getting better and learning. We can't make the mistakes for him and that is how we all learn, I made mistakes. We all have. That is why we are who we are today-STRONGER!

I'm guilty of stupid food tricks!

last night it was lots of mashed potatoes and not nearly enough to drink,result being sludge
..add to that the capers that tasted really yummy but were just the right size to get caught in the cath holes.

I enjoyed it all so much I am going to have it for dinner again tonight....I think I'll drink more