Rectal cancer (Stage 3A) diagnosed late June 2017

[NHMike]

In Boston for appointments. CEA 1.9 (where it was last time). Bloodwork looks fine. The NP suggested Banatrol which is banana flakes, pineapple and a prebiotic. Never heard that term before. Some of their patients have reported good results with it so I will give it a try.

The recent number of recurrences had me a little anxious ahead of today's tests. There may have been some changes too though I can't be sure if it's that respiratory thing that I got several weeks ago.

The Oncologist NP also suggested increasing fiber intake. So I'm going to start taking 5 Nopalina instead of 4, twice a day.

The surgeon told me that a colostomy is always an option and offered a recent patient to talk to but I told her that I can chat with lots of people that have them, that are considering them and that don't have them. I kind of get the feeling that the majority of cancer patients don't use forums for information and support.

I'm not sure how I'm going to incorporate the Banatrol yet - the two approaches that I see are taking it with Nopalina and taking it instead of Nopalina. I'm leaning towards taking both. Here's the description from Amazon:

Banatrol Plus with Bimuno Prebiotic for Diarrhea A natural remedy to treat diarrhea without medication. Clinically proven to be effective. A dual acting natural combination of natural banana flakes and prebiotic to control the severity and length of time patients suffer from diarrhea. Enhances good bacteria while decreasing harmful bacteria. Clinically proven to enhance the immune system of elderly. Does not affect gut motility, does not cause constipation. Effective for infectious disease and flu diarrhea, antibiotic induced diarrhea, tube feeding associated diarrhea, chemotherapy induced diarrhea. Helps reduce mucous and bloating in patients with diarrhea, can relieve Irritable Bowel Syndrome symptoms (IBS) in conjunction with an IBS diet. Conditions: Effective for infectious, tube feed and anti-biotic diarrhea and C diff.

[MeAndMine]

The surgeon told me that a colostomy is always an option and offered a recent patient to talk to but I told her that I can chat with lots of people that have them, that are considering them and that don't have them. I kind of get the feeling that the majority of cancer patients don't use forums for information and support.

I haven't heard of banatrol before but it sounds promising! I hope it works out well for you.

I'm glad that we have the forum to come to so that we have people who can tell us about a colostomy and other things to try. I don't know that I will have a choice about the colostomy with the tumor as low as it is for me, but I know lately I've thought about how nice it would be if I didn't have to ever use my butt again. I've had such a rough go of it with the last treatment and think it must be nice not to have to worry about where a bathroom is and how quickly I can get to it.

It sounds good to use both banatrol and nopalina together to see how it works for you. You could always drop back to one or the other after a bit if you feel like it's a better option. Crossing my fingers that this is the answer for you!

[NHMike]

The surgeon told me that a colostomy is always an option and offered a recent patient to talk to but I told her that I can chat with lots of people that have them, that are considering them and that don't have them. I kind of get the feeling that the majority of cancer patients don't use forums for information and support.

I haven't heard of banatrol before but it sounds promising! I hope it works out well for you.

I'm glad that we have the forum to come to so that we have people who can tell us about a colostomy and other things to try. I don't know that I will have a choice about the colostomy with the tumor as low as it is for me, but I know lately I've thought about how nice it would be if I didn't have to ever use my butt again. I've had such a rough go of it with the last treatment and think it must be nice not to have to worry about where a bathroom is and how quickly I can get to it.

It sounds good to use both banatrol and nopalina together to see how it works for you. You could always drop back to one or the other after a bit if you feel like it's a better option. Crossing my fingers that this is the answer for you!

My surgeon told me that it was her decision during the surgery whether it would be a permanent colostomy or not. So I had to be prepared for that. I knew about the ileostomy (as that's what they do if you don't have a permanent colostomy), but I didn't realize the impact that it would have on my life. But I got used to it. The surgeon did say that people live active lives with a colostomy but I don't think that she knows about the kinds of things that I want to do. Most people don't understand the difference in levels of what athletes can do compared to the general population. Most of her patients are older, have comorbidities and don't spend a lot of time in the gym. Maybe I'm trying to be too active for my age.

I'm generally willing to try products to see if they will help. I still have BioClenanse in my Amazon cart and mean to try that too.

One other thing that I noticed is that the neuropathy in my toes isn't as bad this year. We just had our first cold night (temps in the teens) and I was outside when the temps were in the mid-twenties. I can feel the neuropathy in my toes right now but it's not painful and less buzzy than in the past. It's possible that I'm getting used to it, or that they're taking so much blood in the surveillance appointments that the residual drug percentage is declining, or that things are getting better very slowly. I'm tempted to try donating blood (if they'll take it) just to see if that decreases the neuropathy. It's also possible that more high-intensity cardio is improving circulation. So, it's still there, but it's less of a problem compared to what I remember from last year.

[MeAndMine]

My surgeon told me that it was her decision during the surgery whether it would be a permanent colostomy or not. So I had to be prepared for that. I knew about the ileostomy (as that's what they do if you don't have a permanent colostomy), but I didn't realize the impact that it would have on my life. But I got used to it. The surgeon did say that people live active lives with a colostomy but I don't think that she knows about the kinds of things that I want to do. Most people don't understand the difference in levels of what athletes can do compared to the general population. Most of her patients are older, have comorbidities and don't spend a lot of time in the gym. Maybe I'm trying to be too active for my age.

You're not being too active for your age. You can never be too active! You keep doing what you are doing. You are a highly motivating individual and you inspire me to do better. I had all of these plans for getting in shape before surgery, then stayed in bed for almost a month. I think it's "use it or lose it". As long as you are able to do things, do them and keep it up!

[NHMike]

My surgeon told me that it was her decision during the surgery whether it would be a permanent colostomy or not. So I had to be prepared for that. I knew about the ileostomy (as that's what they do if you don't have a permanent colostomy), but I didn't realize the impact that it would have on my life. But I got used to it. The surgeon did say that people live active lives with a colostomy but I don't think that she knows about the kinds of things that I want to do. Most people don't understand the difference in levels of what athletes can do compared to the general population. Most of her patients are older, have comorbidities and don't spend a lot of time in the gym. Maybe I'm trying to be too active for my age.

You're not being too active for your age. You can never be too active! You keep doing what you are doing. You are a highly motivating individual and you inspire me to do better. I had all of these plans for getting in shape before surgery, then stayed in bed for almost a month. I think it's "use it or lose it". As long as you are able to do things, do them and keep it up!

A fitness tracker is helpful during these times as you can see what you did the past day, week, month or year. And these things often nag you to do something during the day. I can go back and look at what I did a couple of years ago before and after surgery and it reminds me to do better throughout the day.

[susie0915]

I know I have mentioned enemas to you Mike and your surgeon was not onboard. Rectal irrigation is becoming more accepted as a solution to LARS. I have been doing them daily for 3 years with both my surgeon and oncologist approval. I just had my 3 year colonoscopy and everything looked good. I use about 3-4 cups of tap water and it takes about 30 minutes from start to finish. It really has been a game changer for me. It empties my lower bowel for the day and I don't go again until I do again the next morning. I purchased a bag kit on amazon for about $25. It can take a little time to become proficient and develop a routine but it really quite simple after you get through the learning process. Those that do enemas use varying amounts of water and do at different times of the day. Some only do every other day, I do everyday as it makes the process easier and stool doesn't build up. All depends on your schedule. It may be worth talking to your doctor again now that you are further out from surgery and have probably totally healed. I didn't start them until about 16 months from reversal. I just think it may be worth a try before going the colostomy route as there is maintenance involved with this as well. I do have a friend that irrigates his colostomy, enemas are basically the same thing just done through the rectum rather than stoma.

[MeAndMine]

A fitness tracker is helpful during these times as you can see what you did the past day, week, month or year. And these things often nag you to do something during the day. I can go back and look at what I did a couple of years ago before and after surgery and it reminds me to do better throughout the day.

I may dig my old Fitbit back out. My watch doesn’t seem to do as well counting steps and it needs charging way more often so I feel like I’m missing steps or sleep tracking from having to have it on the charger daily. It really does help to see the numbers.

[Jannine]

Thanks for the mention of Banatrol. At this point anything that claims to help with c diff gets my attention quick. The stuff I am taking now does seem to help, but it is expensive and it needs to be kept cool to retain its efficacy. Taking it with me on a trip would be a pain. (Still haven't had a reoccurrence of c diff, fortunately; I'm just eager to avoid it since my next step would probably be a fecal transplant.)

I have a Forerunner 645 watch that I love. The GPS is quick to find me, and running twice a week (for about 30 minutes per run) I only have to charge it once a week or so. Plus it charges in about 10 minutes.

I haven't compared it to anything else in accuracy of steps/stairs, and I don't tend to pay a lot of attention to my day-to-day numbers, so I can't say anything definitive about that. I tend to just read what DC Rainmaker has to say about running/activity watches and go from there.

[NHMike]

Thanks for the mention of Banatrol. At this point anything that claims to help with c diff gets my attention quick. The stuff I am taking now does seem to help, but it is expensive and it needs to be kept cool to retain its efficacy. Taking it with me on a trip would be a pain. (Still haven't had a reoccurrence of c diff, fortunately; I'm just eager to avoid it since my next step would probably be a fecal transplant.)

I have a Forerunner 645 watch that I love. The GPS is quick to find me, and running twice a week (for about 30 minutes per run) I only have to charge it once a week or so. Plus it charges in about 10 minutes.

I haven't compared it to anything else in accuracy of steps/stairs, and I don't tend to pay a lot of attention to my day-to-day numbers, so I can't say anything definitive about that. I tend to just read what DC Rainmaker has to say about running/activity watches and go from there.

The Banatrol is over $1 per dose so not cheap either but we’ll worth it if it works or improves things. I had a Forerunner 630 and upgraded to a Fenix 5+ after a heart incident and it gets a week on a charge and charges fast. I’m considering the Fenix 6X as it runs three weeks on a charge but it’s a big watch.

I’m a big fan of Garmin in general.

[NHMike]

I had a Small Bowel Obstruction overnight. The cause? Asian-style soup bowl. These are typically a big bowl of broth with vegetables and sometimes meat. I had an incident the last time I had one of these. My wife tends to make these from time to time. The problem is that there's a huge amount of liquid and it apparently goes into the small intestine and tries to get through the obstruction to the large intestine. It is far less painful than with food as the liquid will flow through easily - but it just takes time. So there was the usual pressure but it didn't last long and it wasn't as painful as it would have been with food and there are no lingering effects. With food, the pressure and pain can last a day and a half.

The one upside to an SBO is that it results in a cleanout.

[claudine]

It looks delicious though! Recipe?

[NHMike]

It looks delicious though! Recipe?

I just grabbed it off Google. There’s a wide variety of Asian soup bowls and they contain country and culture specific ingredients.

[claudine]

Google is our friend (that's how I found this forum, too!).
Soups - I usually improvise with whatever is in the fridge!

[NHMike]

The Banatrol arrived and I had a look at the packet. It's Banana flakes and a product called Bimuno which can be purchased separately. The company that makes this is Mednutrition and they make a variety of interesting products. It appears that they just combine banana flakes and this other product in this package. The packaging is convenient though - I guess you can mix it with a drink or with food like yogurt. Of course my thought when looking at products like this is can I just eat the food that it's based on. It's certainly possible with the banana part. I don't know if there's some benefit to flakes.

I looked up prebiotics and they are parts of food that feed gut bacteria. I guess probiotics are the actual gut bacteria. I found a list of foods containing prebiotics:

Chicory Root, Dandelion Greens, Jerusalem artichoke, Garlic, Onions, Leeks, Asparagus, Bananas, Barley, Oats, Apples, Konjac Root, Cocoa, Burdock Root, Flaxseeds, Yacon Root,
Jicama Root, Wheat Bran, Seaweed

I'd guess that the Bimuno product is made from some or many of these plant products. I have 32 packets of the Banatrol and will give it a try. It is supposed to firm things up and I don't necessarily think that I need that most of the time. What I really want is control and consistency and we'll see if this helps. That list of plants is a pretty good list of foods to eat anyways. I don't know that we'd be able to source some of the more exotic plants but the list is good enough to try to add to my diet.

[NHMike]

Today I have Probiotics, Prebiotics, Miralax, Slippery Elm and Nopalina. I had to think about which to take as it is an experiment and I was concerned about interactions. I took the Nopalina and Probiotics. I had purchased the Probiotics a few months ago but forgot about them.

I don't think that I want to take the Probiotics with Slippery Elm because Slippery Elm coats the intestines and that may block the effectiveness of the Probiotic. I thought about taking the Probiotic with the Prebiotic but then I wouldn't have a controlled experiment. I decided not to take Miralax as that could wash through the Probiotic. This is why I'm not fond of doing nutritional (and nutritional supplement) experiments - you need to control things and it's hard to factor in interactions. But it's a start.