New Colostomy-post HIPEC

[stephh]

Hi everyone! I haven't posted in a little while. I had a 2nd HIPEC on 6/8 with a 3 week hospital stay. They took my NG tube out too soon, and I got very sick one day, so had to get that back in, which was no fun. I ended up having a full hysterectomy, a liver resection, and my rectum removed and a colostomy placed. Then the hot chemo bath. I had my first HIPEC last december,,,so 2 big abdominal surgeries within 6 months has been crazy for me. I am home now recuperating slowly. I am weak, and trying to gain my strength back. I was sent home with a catheter b/c I couldn't void on my own. Thankfully it was taken out this past tuesday, but I still can't fully void, and have to straight cath myself until I can void more than cath. It is a slooooow process, but hoping I can get back to "normal" soon.
My ostomy has been quite slow....I am still getting used to it. I feel pretty comfortable with it, and putting new bags on, etc. I think because of the extensive surgery I had things are slow moving in my gut....
Would anyone have any insight/knowledge from having a new colostomy and what it's like....how long things took for movement post surgery (every day/every other day?) I went all of yesterday without any movement/gas. Today I had a little gas, but no movement yet. It's hard to want to eat sometimes when things move so slowly...but I know I need to eat and get my strength back, and get that protein! And to drink drink drink...which is sometimes hard too.
Any advice as to what foods usually do your colostomy/gut good, and any beverages. How do you do with dairy and cheese? Does it constipate or the other?
And how do you deal with the noise output?! LOL...
I'm embarrassed to go back to work with this thing. I feel like if it makes noise I'm going to have to explain myself to whoever is near...
Thanks and hope you all are well. Been checking up on everyone periodically.

[Ashlee H.]

Wow! One of the few with a double HIPEC. It is amazing what you have been through. I can't offer you any suggestions. Sound like you have a handle on some of the important things. You have been through a lot. Give your body time to heal. Here's hoping this time they killed all those little suckers.

[SoConfused]

Steph, it's good to hear from you and glad you're doing better. wow! that sounds like quite the surgery. My understanding was that liver involvement rules out HIPEC so was pleasantly surprised to read about your combo liver resection/HIPEC.

Where did you have your surgery done? who was your surgeon?

Wishing you continuing progress and a complete recovery.

[fritts44]

Hi Steph. I'm glad you're doing so well after the surgery! Regarding your colostomy, did they put you on a low-residue diet? I was on this for 6 weeks. It was tough to get in the protein I needed to recuperate from surgery, and I primarly used Carnation Instant Breakfast to get my protein. But, I like CIB, so it wasnt a problem for me. If you like Greek yogurt, you might want to try that as well (I couldn't eat that without fruit, so I didn't eat that). Basically, I lived those 6 weeks off turkey sandwiches (on white bread) and CIB.

I'm 1 1/2 years out & I still have days when I do not have any output or activity. Basically, my schedule is 2 silent days, then 1/2 day "gusher", I call it, then 1 1/2 days steady output. I think this is my new normal. Your body will find it's new normal.

Regarding the noise, I think because it comes from your stomach, most people just think your stomach is growling! Most my noises sounds like that. You will find that a lot if times, you'll be able to tell when a no use is coming, and you can muffle it with your hand pressing on your stoma. Also, there's a board for people with ostomies -- www.ostomy.org & they're a great source for living an active life with an ostomy.

Lee F

[stephh]

Steph, it's good to hear from you and glad you're doing better. wow! that sounds like quite the surgery. My understanding was that liver involvement rules out HIPEC so was pleasantly surprised to read about your combo liver resection/HIPEC.

Where did you have your surgery done? who was your surgeon?

Wishing you continuing progress and a complete recovery.

I had a spot that showed on scans that they said was anterior to my liver-I didn't know if it was cancer, and turned out it was, when they went in for surgery. The surgeon took a wedge of my liver out and ended up doing the HIPEC too-thankfully! I've heard of some surgeons doing the liver resection with HIPEC, but it's not often I see that.
I went to Mayo Clinic in Scottsdale, Arizona. My surgeon was Dr. Nabil Wasif. He is awesome. He did my first HIPEC too. I had another surgeon do my hysterectomy during this surgery.
Thanks so much SoConfused.

Lee-thanks so much for your insight. Things are getting better with the colostomy slowly but surely. I had some harder pieces come out last night that I never had before, so it seems things are heading in the right direction!
I've been drinking some high protein Boost-which really isnt so bad. I kind of like it! But the carnation IB is better for sure. Good idea.
Thanks for the thought of muffling the stoma if I feel the gas coming through. I'll have to try that. I am still getting used to knowing when it's coming. It's funny,,,,but not if I'm at work!
But I need to get over that...because it's not going to go away. Something I'm going to have to deal with. And I have to work.