Hi Everyone
My date is set with Dr. Milsom. I am getting my k pouch june 21. I am really nervous and scared. How is the recovery and I am still wondering about the diet? I have been reading Kaybird's updates and it doesn't seem that bad. What is the thing about being stinky while the drain in and what is the drain attached to while it is in you? Any advice about recovery would be very welcomed!

Hi Karmen,
congrats on your K-pouch date! Are you having it done in NY? My recovery is coming along slowly but surely. I don't know what else (if anything) you're having done. I had j-pouch removal and proctectomy too, the combo has made this the hardest surgery I've had to recover from. I don't want to scare you, every one deals with things their own way! I'm doing fairly well now 4 weeks post tomorrow and trying to get out of the house every day. Sitting for prolonged periods is still out of the question.

The way the Cleveland Clinic does the constant drain is that they thread the cath through the nipple of a baby bottle - they just cut the tip off. The nipple is attached to a little plastic plate almost oval in appearance about 3 inches wide by 2 inches tall. The back of the plate has two little hooks for a belt (very similar to an ostomy belt). So the cath goes in the stoma and they set it up so that once the cath is all the way in the pouch the plastic plate rests on your skin. Then you wear a belt which keeps the plate and cath in place.

I put gauze inbetween the plate and my skin which I change twice a day and there is a bit of discharge that comes out the stoma due to the valve being kept open by the cath. Kinda stinky. The hardest part for me is sleeping with it in, I find it hard to get comfortable, and I'm always fussing with the tubing.

My diet is very limited and I'm still trying to figure out how its all going to work. I take a swallow of water in between each bite and I chew and chew but output is still very thick sometimes. I suppose I need to drink more grape juice but I'm just not the biggest fan.

Want to wish you the best of luck!

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katie

Thank you. I had a colostomy done 6 yrs ago so I am half way there. My rectum and part of my colon due to colorectal cancer. Thank god I at least have that part done. I remember what it was like not being able to sit. That really hurt! I'm having the surgery done in NY presbtarian in NYC. He will due it Lapriscopicly which I thought was great! My Dr just said that I will be on a low residue diet ( what does that mean??). I guess it will make me skinny ...Lol.
Karmen

Is your drain out now? They say it only stays in #weeks but some people keep it in longer.
Karmen

Karmen,

Well lucky you! Getting surgery laproscopically will certainly cut down on the recovery time. My incision is 7 1/2 inches - my biggest yet!! I know thats nothing compared to some people but I'm not that tall so I don't know how much bigger it could get.

Low residue probably means GI soft. Thats my restriction for 6 weeks. No raw fruits and veggies, nuts, seeds kernals and Basically you have to be able to cut it with a fork. I got a sandwhich from arbys the other day and then realized I had to toss the bun cause of the seseme seeds. Oh well.

My drain is still in. I was told I had to have until my post-op appointment which is June 20. then they'll take it out and teach me how to intubate myself. I'm looking forward to getting it out.

I did notice something interesting the other day and that is that the constant drain in my belly is much larger in diameter then the marlen cath I'll be using to intubate. Kinda concerns me cause of stool thickness. Guess we'll see how it goes.

I'll be thinking of you on the 21st - good luck!

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katie

Hi Karmen
My 24/7 cath stayed in for 4 weeks.You will have a larger bag when you wake up from surgery for the contents of the pouch to drain itno. You will get a smaller bag you can 'belt' around your leg to use during the day. I didn't think I'd want to but I did go out while I wore this bag. Just found loosepants that hid it fairly well.

Laporiscopic! That's terrific!

You will be on low residue ( no fresh fruits and veggies)at least for awhile. You will introduce new foods as you heal. I had a Kock for 24 years and now a second and the only things I really stay away from are peas, mushrooms, skins of fruits,mangos and carbonated beverages. There are probably more. I do eat popcorn(staying away from the unpopped kernals) and nuts. You must CHEW very well and drink. I am always the last one finished eating

Keep asking questions

What about sushi? Can you eat it? I was wounder about the seaweed that the rolls are wrapped in. I love it and eat it about once a week! Spicy foods also??
thanks for the suggestions.

I have tried sushi with the pouch and it was not a good idea, but you don't know until you try. I think it was more do to the stickiness of the rice, rather then the seaweed.

I have not had any problem with spicy foods.