Skip to main content

Hey gang,

Well, remember i said how happy i was with my new K pouch? Lets take that back, i just got home from the hospital, been there since lat saturday morning! I woke up with horrible abdominal pain, cramps, throwing up, yet nothing was coming out of my pouch. Called the ambulance (was way to sick to get to emerg any other way). I found a new definition of agony, i thought for sure i was going to rupture. I knew it was a blockage, but being a saturday they had to call the on call radiologist to come in so they could attempt to clear the blockge under fluroscopy. 28 hours later, they finally cleared it, but used a french 16 cath! Way too small, but being the weekend they had no other supplies available. Was a HUGE relief to have the pressure and pain gone (i swear to god, my toxic megacolon wasn't this painful, i had tears in my eyes) but, since the cath they used open up my valve and clear the blockge was so smll, i was clear fluids only until yesterday, when they finally realized i couldn't eat. SO, i gave them my own cath (forgot it was in my bag), took me to angio, and the swapped it out so i can et real food without blocking the cath. Oh yeah, did i mention Dr Cohen, my surgeon, is on vcation until september, and no other doctor will touch his work? SO, i have to wait, until Sept 10th with a cath stuck in my stoma 24/7! Oh yeah.....the blockage location? Right in the nipple valve, you know, the valve that keeps my poop from leaking out? My last CT yesterday shows the valve seems straightened back out, but the blockge caused it to turn in on itself, and twist, aka, dr cohen may have to re-operate to correct it, oye vey! Just when i thought i was ready to get back to work and my life! But, as before, i have to thank the amazing nurses at Mount Sinai here in Toronto, they are awesome! My stoa nurse, Julie (who is also amazing) told me from day one, with a Koch Pouch, i have to become the teacher, and boy was she right! Aside from the nurses, no one knew what a K pouch was, let alone how to treat it. I literally had to instruct the doctors wht i needed to have done, and they still wouldnt listen, agh! If you are thinking about getting a K pouch, be prepared to educate eveyone about it! I never realized how rare they are. When i called medic-alert to update my file, hey said they had never heard of a K pouch, i had to send them the info on it to put in their file! Anyways......sorry for rambling, just fed up with being hospitalized, and the beat goes on!

Eric Mad
Original Post

Replies sorted oldest to newest

Poor you Eric...I am so sorry...
I had it happen to me a few times post op but usually much closer to the surgery date (1 to 2 weeks out) and yes, it is a humdinger! Pain like you are in labour and the damn baby does not want to come out! Throwing up your guts every time you take a sip of water...yup, my body was telling me not to put anything else in there! NO, they did not know what to do with me in ER either but in my case dr C was within ear and eye shot so I was followed up very quickly...hang in there kid...if you need advice please pm me.
I had had the same post op complications and ended up on strait drain for months at a time the whole while working full time at the other end of the city and taking public transportation 1.5hrs each is doable so do not allow the tube in you to stop you from doing every thing that you want to do (other than some maybe Olympic sports!)...there are ways of attaching it, bending it or plugging it so that you do not have to have the bag attached to it...I used a collodial sheet/patch that held down the tube close to my skin without the inconvience of tape or a belt and then plugged my tube with those little green plugs (and taped it down for double security)...I taught that way without the kids ever knowing it from Nov to March, granted I didn't eat much while out but my evening meal were good...I always stuck to mostly protien meals (fish, chicken and white meats) with bananas and other soft fruits or compots and simple, low fiber veggies (peeled tomatoes, cucumbers, avocado...) so that my tube didn't clog or need to be cleaned out...If you need help with the tube hook up just PM me and I will explain in further detail.
More hugs
Thanks Sharon! For the moment I've covered the bag and hose with white tape, looks kind of like a white snake! I'm sure I'll be just fine, as soon as I get my energy back, really dizzy and even after a 12 hour nap, I'm pooped, then again, I only started eating 2 days ago, will take a few days to catch up. Right now the weird issue is my emotions! It's bizzare! Normally I'm pretty grounded, but now? I can bust into tears just thinking about my situation, or anything sad. I have no control over it. I was sitting on my 20th floor balcony enjoy the beautiful view on a warm sunny day, and I start crying like a little girl, wtf is that about? Could it be andropause? I'm only 43, I'm too young for that, anyone else seem to be overly emotional while going through what I am currently enduring? I'm just a big Girly man!
Yup, a lot of us go through this especially when we have had sudden relapses, post op complications and sudden deceptions...T.V. commercials would have me sobbing over insurance hubby would stare at me in wonder as the tears dripped down my face during cartoons and the wonder wizzard of Oz....I regressed to the emotions of a 3yr old!
You need lots of fluids, sleep, electrolytes and possibly a valium or 2...just to get you over the hump....try canned chicken soups with noodles (no rice, it is clogging) and tomato soup too...and take naps before and after your naps... Big Grin and make yourself some good old fashioned sweet lemonaide with real lemons and sugar and mint to bump up your glucose level.
Hang in there won't be long now.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.