The Colon Club

NHMike wrote:My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.

I'm a fitness buff too and was told during treatment not to do heavy exercise shortly before a CT scan due to possible false readings in both CEA and blood test results. There's a strong possibility that is what's going on with you. I'd hold off before the next set of labs. Glad to hear the CT scan was clear!

Juliej

juliej wrote:

NHMike wrote:My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.

I'm a fitness buff too and was told during treatment not to do heavy exercise shortly before a CT scan due to possible false readings in both CEA and blood test results. There's a strong possibility that is what's going on with you. I'd hold off before the next set of labs. Glad to hear the CT scan was clear!

Juliej

I'm not sure what constitutes heavy exercise. I'm doing a lot of low-intensity cardio - basically walking.

Congrats on the CT scan. That is great news!

Congrats Mike!

I got a taste of the reversal today.

I haven’t been emptying the bag at night for a week and it had increased the amount of mucous. Last night I had a lot of beans and ate later than I should. I did wake up a few times to the bag being full with gas so I just burped it and went back to sleep.

This morning I spent a lot of time on the toilet pooping out mostly soupy stuff but a few harder pieces. One time there was some blood too. I’ve been doing this for about six hours and it’s a real pain. I haven’t actually spent much time on a toilet seat since last year so things are different. I’ll go back to waking up at night to empty the bag.

I suspect the blood may be tugging on the stitches or irritation of the large intestine as it hasn’t been used for a long time. My wife found me a large pad which I will use to go out.

This is some journey!

I may be NED but it doesn’t feel like being back to normal.

I am eating beans but not a lot, only on portion anyway I think it is a very good thing if you get rid of mucus and other stuff that accumulated over several months in your colon. I read that a water enema a week was advised to get the colon used to adsorbe water again before reversal.

Claudia

Atoq wrote:I am eating beans but not a lot, only on portion anyway I think it is a very good thing if you get rid of mucus and other stuff that accumulated over several months in your colon. I read that a water enema a week was advised to get the colon used to adsorbe water again before reversal.

Claudia

The problem with the beans was in that they filled up the bag with gas which forced the waste into the large intestines. I hadn't passed gas in a long time (except through the bag), so it was a feeling that I hadn't had since last year. The sitting on the toilet stuff actually has me quite tired out today and reluctant to go out of the house. But we need to do grocery shopping and we did have plans to do some traveling. One thing that bothered me was my limited ability to prevent stuff from coming out.

I have a pad on right now and that should hold things up reasonably well. The amounts coming out aren't large so the pad should work if there's a bathroom nearby.

This stuff reminds me of the chemo/radiation days.

Things were a lot better about eight hours after this started. My daughter looked at a picture of the stuff and she said that it looked like blood and some mucous. I went out twice and there was some mucous output and a slight tinge of blood the first time and a little waste but mostly mucous the second time. So it looks like most of it is done. But I'll wear a large pad for a while, probably overnight and not eat anything before bed and wake up to empty the bag overnight.

My daughter went over the kinds of pads that are available that women use and she said that there are overnight pads with a lot of coverage. I may have her buy a package or two for me or may order some on Amazon. I have had this happen before but there was much less waste to deal with and it wasn't for a long time. I had hoped to not have to wake up at night but that's not the case. Hopefully it will be one of these days.

We did have plans to go to Maine but they were scuttled as I was uneasy being far away from a bathroom for so long.

Mike:
I can appreciate your heightened concern on visualizing tinges of blood from your unexpected anal discharge, but my sense is that you can ease your concern/worry.

Your distal large intestine and remaining rectum post-resection have been “off-line” and resting for several months. The lack of fecal material regularly passing through the resting intestine often causes mild to moderate inflammation (colitis) due to the lack of short-chain fatty acids. The surface capillaries are more fragile and prone to bleeding.

The meal of beans and legumes likely resulted in increased gas and pressure at the site of your stoma and attached pouch, which would have had the effect of migrating some of the stoma output into the adjacent mucus stoma . . . And down the hatch through the resting portion of large intestine. The process of passing mucus poops” and accumulated cellular debris can be unpleasant and taxing and messy.

Sitting on the toilet, as you are, is a good strategy. Putting your feet up on a small block/bench can also help in passing the material by naturally opening the lower rectum and anus (squatty potty). You can also use a child’s nasal syringe/irrigator to irrigate the lower rectum and facilitate loosening of accumulated waste material/cellular debris. I do this while showering. Managing mucus poops is a frequent topic of discussion on the United Ostomy of America forum, and a frequent source of frustration, confusion (what in the heck is this?), and angst.

I have a permanent end ileostomy with a remaining 1/2 inch rectal cuff. I am at emotional peace with the ileostomy itself but abhor and detest the occasional passing of “mucus poops.” The sloughed material is unsightly, slimy and smelly.

I use a protective liner called “Butterfly Pads.” These pads are specifically designed to contain anal discharge and have been an emotional life-saver. “Butterfly Pads” are available on Amazon.
Karen

Thanks for the details Karen. I had guessed either the stitches or irritation.

I'm using some rather large pads that my daughter bought from Costco but doesn't really like so she told me that there are quite a few remaining. Hopefully I won't need anymore until the reversal.

It wasn't a fun day but at least I get a little feeling for what things will be like on the other side. And then hopefully things get better over time.

Port flush this morning. Very easy and quick. Yes, you do get stabbed but it's one of the easier things in treatment.

juliej wrote:

NHMike wrote:My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.

I'm a fitness buff too and was told during treatment not to do heavy exercise shortly before a CT scan due to possible false readings in both CEA and blood test results. There's a strong possibility that is what's going on with you. I'd hold off before the next set of labs. Glad to hear the CT scan was clear!

Juliej

Is this really true for CT Scan as well?
I can see it causing inflammation in the muscles/joint tissue causing slight CEA increase. I'm hoping that's why mine has been elevated slightly, but how could it effect CT scan?

I'd really like to know, because I have a mountain climb/backpack trip scheduled for July 21/22 and a CT scan scheduled for July 24.
Might have to consult my ONC, but would like feedback. thx.

I found a study indicating that CEA went down with exercise but I doubt that they were talking about the exercise levels that some do here. All of the walking I do does cause some inflammation - I get a little chondromalacia (knee-tracking issues) from time to time and it results in losing cartilage in under the kneecap. My toes are a wreck too. But I don't know if it's causing these levels. If it keeps going up, then I'll be worried.

Of course one way to prove that it's the exercise is to stop doing it - but it's hard for me to not exercise.

I noticed a leak in my bag two days ago - slow but annoying. It appears to be due to a misaligned Velcro strip not sealing the bottom of the bag all of the way. I put some Hypafix tape to try to contain it but I think that I'm just going to change it now. The annoying thing is that the next bag has the same issue. So I checked the rest of the box and they all have it. I imagine the other box has the problem as well. That's the problem with modern manufacturing. If there's an error, then they'll all have the same error. It only started happening on the sixth day so I'll have to change the bag more frequently.

NHMike wrote:I noticed a leak in my bag two days ago - slow but annoying. It appears to be due to a misaligned Velcro strip not sealing the bottom of the bag all of the way. I put some Hypafix tape to try to contain it but I think that I'm just going to change it now. The annoying thing is that the next bag has the same issue. So I checked the rest of the box and they all have it. I imagine the other box has the problem as well. That's the problem with modern manufacturing. If there's an error, then they'll all have the same error. It only started happening on the sixth day so I'll have to change the bag more frequently.

I had a similar issue, my vendor sent a new box free of charge. I have gotten quick with changing appliance, 5 minutes. I use a wax ring and stoma powder maybe that's why it is so quick. So much easier to change then to risk a problem for me anyway, I am too active for risks.

S