The Colon Club

Caat55 wrote:

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

The wafer and bag are $32 a piece so I expected better. I think, though, that I might just wind up with another box of them with the same problem unless they've fixed it. I wish that the velcro spanned the whole width of the drain instead of leaving so much open space.

NHMike wrote: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 received word back from my cancer center today on intensive exercise in correlation with scans and CEA.

Intensive exercise can increase CEA levels, but generally only slightly and generally only if muscle tissue has been broken down such as during heavy weight training.
Exercise over extended periods of time should in fact lower CEA levels as general overall body health increases from the benefit of continued exercise.

CT Scans should not be effected by exercise. PET scans can be effected by intense exercise and is best to not exercise for 48 hours prior to a PET scan.

benben wrote:

NHMike wrote: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 received word back from my cancer center today on intensive exercise in correlation with scans and CEA.

Intensive exercise can increase CEA levels, but generally only slightly and generally only if muscle tissue has been broken down such as during heavy weight training.
Exercise over extended periods of time should in fact lower CEA levels as general overall body health increases from the benefit of continued exercise.

CT Scans should not be effected by exercise. PET scans can be effected by intense exercise and is best to not exercise for 48 hours prior to a PET scan.

I'm walking (with a bit of running) about 100 miles per week but I wouldn't call it intense exercise. Just a lot of low-intensity cardio. I haven't done weights or high-intensity cardio. All of that walking, though, is brutal on the skin on the toes and feet and puts some stress on the ankle and knees and I feel the joint stuff a little bit from time to time but a little rest and it's fine. The thing is that the chart of my amount of activity correlates well with the CEA chart.

I'll try to get another CEA in a few weeks. I think that insurance covers one a month at the most unless while on chemo.

NHMike wrote:
I'm walking (with a bit of running) about 100 miles per week but I wouldn't call it intense exercise. Just a lot of low-intensity cardio. I haven't done weights or high-intensity cardio. All of that walking, though, is brutal on the skin on the toes and feet and puts some stress on the ankle and knees and I feel the joint stuff a little bit from time to time but a little rest and it's fine. The thing is that the chart of my amount of activity correlates well with the CEA chart.

I'll try to get another CEA in a few weeks. I think that insurance covers one a month at the most unless while on chemo.

Well I'd venture to guess that while your body is still under the effects of chemo that CEA levels may increase even more with exercise.
The skin issue should start to resolve itself soon. I remember while not getting oxaliplatin I still had some skin issues, so most likely 5FU related.
But all of that resolved about 1-2 months after chemo ended.

100 miles per week walking is no small amount while under chemo effect. Even at a very brisk 3.5 miles per hour that's about 29 hours of walking per week. That's great for where you are now.
I'm doing 120 miles bike riding per week (start the day with a 20 mile river loop) and get a few 1200-2000 ft climbs in per month as well as back into the weight training. I was mostly concerned about my upcoming CT scan as I'm doing a 5000 ft mountain climb next weekend, but wanted to share what my center reported. Glad to know it shouldn't effect the CT scan. Of course scanxiety is here regardless.

Keep up the good work Mike. You should really start to see a shift in improvements 2-3 months outside of treatment.

benben wrote:Well I'd venture to guess that while your body is still under the effects of chemo that CEA levels may increase even more with exercise.
The skin issue should start to resolve itself soon. I remember while not getting oxaliplatin I still had some skin issues, so most likely 5FU related.
But all of that resolved about 1-2 months after chemo ended.

100 miles per week walking is no small amount while under chemo effect. Even at a very brisk 3.5 miles per hour that's about 29 hours of walking per week. That's great for where you are now.
I'm doing 120 miles bike riding per week (start the day with a 20 mile river loop) and get a few 1200-2000 ft climbs in per month as well as back into the weight training. I was mostly concerned about my upcoming CT scan as I'm doing a 5000 ft mountain climb next weekend, but wanted to share what my center reported. Glad to know it shouldn't effect the CT scan. Of course scanxiety is here regardless.

Keep up the good work Mike. You should really start to see a shift in improvements 2-3 months outside of treatment.

My fitness center manager said that 100 miles is serious stuff, even for walking. Most I've ever run in one week was 70 miles and that was the week before I was diagnosed.

The hospital called with the reminder for my Barium Enema and Pre-Op appointments on Monday and I need to get to reading all of the stuff they sent me.

I'm taking today and tomorrow off. Today to take care of some paperwork (financial, passports, claiming lost property from the state), and plan to go to spend a night in a coastal town and then the beach during the day.

Changed the bag this morning and it took 30 minutes. In general, the walking means that there's very little food to go into the bag in the morning but I drank a lot of water and that's what came out while changing the bag. I have 12 of these bags left and probably 50 of other kinds which don't work as well so I have enough bags to change them every day. This bag change is 7 days after the previous one. The main reason to change the bag more often would be so that I could run without worrying about leakage or detaching issues.

Barium Enema tomorrow morning and I'm not fully sure of the directions but looking around it's not eating after midnight so I stopped at 8:00 PM. Only clear liquids after midnight. I need to read the literature now for the surgery the following week. Pre-op after the BE.

The Barium Enema went reasonably well. It was a little uncomfortable but I got some practice on controlling things a few hours after the test. The Nurses and Doctors were very good as well - they made something uncomfortable go fairly smoothly. I had read a bunch of things on the procedure from various forums and I was a little worried but the folks this morning knew what they were doing.

The Pre-Op appointment consisted of meeting with two anesthesiologists, answering a bunch of questions, getting hibiclens and the ClearFast bottles. They were going to do blood tests but I just had them three weeks ago and they were able to pull the information off of EPIC - so Electronic Medical Records saved me a few tubes of blood. Surgery next Monday.

So cool! Only a week to go, good luck with this last surgery!

Atoq

Atoq wrote:So cool! Only a week to go, good luck with this last surgery!

Atoq

It's hard to describe the feelings. Sometimes happy, sometimes odd, sometimes worried.

I have all of these Ostomy Supplies as well and I've been looking around the web to see what to do with them. Life with cancer changes you so much and then you get used to it and then you're fixed. Hopefully. I think that I'll still require a few months of recovery.

I was rather amazed at how fast you recovered as that isn't the norm from what I can tell.

I was able to donate my Ostomy supplies to World Medical Relief. There may be an office near you, or you may be able to ship to them. Recently I emailed them and was able to send them some left over medication my oncologist prescribed for diarrhea during chemo. It was packets of powder you mix with liquid.

NHMike wrote:

Atoq wrote:So cool! Only a week to go, good luck with this last surgery!

Atoq

It's hard to describe the feelings. Sometimes happy, sometimes odd, sometimes worried.

I have all of these Ostomy Supplies as well and I've been looking around the web to see what to do with them. Life with cancer changes you so much and then you get used to it and then you're fixed. Hopefully. I think that I'll still require a few months of recovery.

I was rather amazed at how fast you recovered as that isn't the norm from what I can tell.

It's been amazing and such an experience following your journey! I'm wishing you healing and future good health!

Last minute stuff: I called the oncologist about removing the port and he said okay. I had sent him a message via the hospital portal on Monday. Surgeon added it to the surgery schedule. I'm going down to Boston on Sunday, staying overnight at a hotel next to the hospital and then going in around 4:30 AM. I start the Hibiclens showers tomorrow and need to change the bag today or tomorrow (it's been 8 days on the current one). Lots of stuff to take care of and then going in. Thanks for the well-wishes.

Good luck Mike. I'm watching you, taking Clues and hints for my own surgery. Surgeons waiting until September to get things going. I've only been off chemo for 2 weeks so lots of healing and stuff to get out of my system. Good news is I had ice cream yesterday for National Ice Cream month and it wasn't too uncomfortable.
Wishing you well,
Susan

Good luck Mike. I'm sure everything will go well. You have all under control.

Hi, I am age 44, diagnosed with Stage 3A T1N1 low rectal cancer early June 2018. Done with LAR surgery on 28 Jun. On illeostomy. Started Folfox on 25 July.

Oncologist and radio therapist recommended 4 months chemo followed by 2 months radio.

Surgeon is confident that the surgery was done clean and complete.

I am torn between full 6 months chemo or chemo plus radio bearing in mind that radio may cause long term side effects such as poorer bowel functions.

Weighing against risk of local recurrence between 5 to 7% without radio and 3 to 4% with radio.