The Colon Club

NHMike wrote:I wanted to change the bag this morning but output was steady so I'm putting it off until this afternoon. I haven't eaten for 15 hours and bag output is nil but I'm in the office and have only once changed it away from home. So it's another three or four hours for about 19 or 20 hours fasting. Bag change should be really easy.

That's a long fast but I've done about that when I was traveling and it was worth the peace of mind knowing that I wasn't going to have to deal with public restrooms.

I hope you really enjoy your next meal!

Shana wrote:

NHMike wrote:I wanted to change the bag this morning but output was steady so I'm putting it off until this afternoon. I haven't eaten for 15 hours and bag output is nil but I'm in the office and have only once changed it away from home. So it's another three or four hours for about 19 or 20 hours fasting. Bag change should be really easy.

That's a long fast but I've done about that when I was traveling and it was worth the peace of mind knowing that I wasn't going to have to deal with public restrooms.

I hope you really enjoy your next meal!

I usually do at least one full-day fast (no food or water) a year. The thing about the Xeloda, though, is that you have to eat at least every 12 hours. So I can only do this on the off-chemo week.

The longest I've done a complete fast (no food or drink) is two days - and that's very hard to do - and probably not safe for a lot of people.

My current fast is only food. I've taken an electrolyte supplement and lots of fluids.

That's good and I assumed that you were taking in plenty of fluids and keeping hydrated

The bag change took 24 minutes. Liquids kept shooting out. And I mean shooting. They would shoot out about a foot from the stoma. I guess too much fluids can be a problem too.

At least it wasn't 90 minutes.

I had a lot of problems early this year ordering pouches and I accidentally ordered the Convatec Beige bags. I was using the transparent before but a much bigger size and not the Convex solution that really works well. The next two orders were transparent bags.

The beige bags have two problems:

1) you can't see what's in the bag or where the stuff is (well, it's beige after all),
2) The plastic at the opening is a lot easier to pinch open with the transparent bag compared to the beige bag

I have six of the beige pouches left and I decided to try one of the transparent bags and things are a lot better. The plastic on the transparent bags are apparently stiffer so they open more easily with a pinch.

I got a lot of samples when I came home. Stoma nurse ordered all the Hollister products. They are fine the first day and then begin to hand funny. I like that I can burp them easily because these vents just plug up. I have to go into the rest room almost hourly to release the gas or I have a balloon on my gut. It is the biggest issue when I am working. I am going between the Coloplast sensura mio, hollister and convatec.
I will definitely change is on Thursday morning before next Oxilaplatin, it was awful the day after, fingers didn't work.
This off chemo week I am enjoying fresh strawberries and yogurt, a smoothy and cool tea. If I hold the drink in the front of my mouth for just a bit, I can then swallow without pain. It was 85 yesterday, so nice to enjoy a cool beverage.

That sounds nice.

My WOC nurse only trained me on Convatec and my approach is to stick with what works. I do have a decent number of Coloplast Mios but I never felt comfortable trying them out. I did send them a comment that it would be nice if they had videos showing how to apply them. I do have an emergency kit with the Coloplast products in them as they are one piece and look simpler to use in a pinch. One of the samples kit I got had a nice little bag to hold two pouches, wafers, wipes, spray, scissors and a mirror (mirror and scissors were included). I have never had to use the emergency kit but it gives me some piece of mind having it around.

This is my week off as well and I'm enjoying the cold stuff, particularly water. Nowhere near 85 here and we might have to wait until July for temps like that.

NHMike wrote:That sounds nice.

My WOC nurse only trained me on Convatec and my approach is to stick with what works. I do have a decent number of Coloplast Mios but I never felt comfortable trying them out. I did send them a comment that it would be nice if they had videos showing how to apply them. I do have an emergency kit with the Coloplast products in them as they are one piece and look simpler to use in a pinch. One of the samples kit I got had a nice little bag to hold two pouches, wafers, wipes, spray, scissors and a mirror (mirror and scissors were included). I have never had to use the emergency kit but it gives me some piece of mind having it around.
at.

The Minos have a gray cover that dries quickly. I have a few sample one pieces that I am using. They work well when my fingers are challenged as the stick to the wafer just peal and press rather than snapping on. I found some You tube videos that I used when I had to change bag solo first time the day after coming home. See what you can find. The cover is loose so you can see both top and bottom but only when you want to.
S

Two days before infusion and I'm generally feeling better though hands and feet are still present but the fatigue that I had for 2.5 weeks is a lot better.

One oddball thing today. I had to remove a noodle that was four inches in the bag. It wouldn't come out so I pinched it in the bag and the long part came out but some might have still been stuck in the stoma. I looked around for it later (transparent pouches area great) and couldn't find it so I hope that it's gone. That's why I should chew better.

I'm not looking forward to Oxaliplatin or Xeloda right now and we'll see how things go on Wednesday.

I remember dreading when infusion time came. Just when you start to feel okay and you have to go back. Hope everything goes well for you Wednesday. Only a couple more to go.

How is it going with the training? I ran 4 x4 minutes yesterday with an app that is calculating your VO2 max (max oxygen uptake). I had 59 before diagnosis and I am now back to 52 last week and 53 this week. Slowly coming back. It is so nice to run because, even with the bag and lack of training, it feels so «normal».

Claudia

NHMike wrote:Two days before infusion and I'm generally feeling better though hands and feet are still present but the fatigue that I had for 2.5 weeks is a lot better.

One oddball thing today. I had to remove a noodle that was four inches in the bag. It wouldn't come out so I pinched it in the bag and the long part came out but some might have still been stuck in the stoma. I looked around for it later (transparent pouches area great) and couldn't find it so I hope that it's gone. That's why I should chew better.

I'm not looking forward to Oxaliplatin or Xeloda right now and we'll see how things go on Wednesday.

I go back on Thursday, Sure has been nice to feel normal for a bit. Chewing is my bad, have to concentrate on eating, slowing down especially as I eat so many veggies and they need extra chewing for short track. Still anemic but found some iron pills yesterday without folate which I am going to try.

S

Atoq wrote:How is it going with the training? I ran 4 x4 minutes yesterday with an app that is calculating your VO2 max (max oxygen uptake). I had 59 before diagnosis and I am now back to 52 last week and 53 this week. Slowly coming back. It is so nice to run because, even with the bag and lack of training, it feels so «normal».

Claudia

I was rather tired for about 2.5 weeks. It was the chemo and I think that I had a cold or worse the last week of that - I did sleep a lot.

So 1/2 week of recovery is almost over and I've mostly done floor work and Yoga and some weights. Work is heavy too.

Caat55 wrote:

NHMike wrote:Two days before infusion and I'm generally feeling better though hands and feet are still present but the fatigue that I had for 2.5 weeks is a lot better.

One oddball thing today. I had to remove a noodle that was four inches in the bag. It wouldn't come out so I pinched it in the bag and the long part came out but some might have still been stuck in the stoma. I looked around for it later (transparent pouches area great) and couldn't find it so I hope that it's gone. That's why I should chew better.

I'm not looking forward to Oxaliplatin or Xeloda right now and we'll see how things go on Wednesday.

I go back on Thursday, Sure has been nice to feel normal for a bit. Chewing is my bad, have to concentrate on eating, slowing down especially as I eat so many veggies and they need extra chewing for short track. Still anemic but found some iron pills yesterday without folate which I am going to try.

S

It's definitely a grind. This cycle was lower in terms of intensity of the side-effects but more work and other responsibilities took time away from me.

Got my labwork back. No wonder I'm so tired. H&H had a pretty big drop (they were already lower than normal). Platelets were down. I'm wondering if we continue tomorrow or not. If we do, I'll look to Xeloda only, maybe dropping it to 3,000 mg from 3,500 mg. I probably won't get the CEA until tomorrow. Some things were rising which shouldn't be rising (they're above the normal range).

One week delay. Doctor was wearing a mask as he has a cold. He said that a lot of staff have it too. It's supposed to be in the mid-80s here today so that will be nice if I can get outside. Stuff is piling up at work. CEA was flat at 2.8 which is a relief.