Rectal cancer (Stage 3A) diagnosed late June 2017

[O Stoma Mia]

... I'm going to start a book (or long article) on reversal issues. Just something to keep track of what I find and what I will be learning along with some of the things that I'm going through. I sometimes gather a lot of good information and a paper or book is a good way to keep track of things.

... I do wish that there was a book on just the reversal stuff. I have starting materials for such a book but I haven't started yet as I have an accumulating pile of stuff to do at work...

NHMike -
Thank you for thinking about writing an article or a book. A book or even just an annotated bibliography would be very helpful at this point for newly diagnosed rectal cancer patients.

What kind of format are you considering -- a literature review? a journal of personal experiences? a sort of Wikipedia article?

I hope you eventually get some free time to work on this project. It will certainly be a valuable contribution to the LARS literature when it comes to fruition.

[NHMike]

I’m in one of those 4 hour bathroom sessions and it’s painful and uncomfortable. The pain is likely from bleeding from irritation and I have to lie down on a side to rest as lying on my back is uncomfortable.

Neuropathy seems like it is getting slightly worse.

My days in the office are not bad. I usually have the marathon bathroom sessions at night or early morning.

I increased walking speed to 4.1 MPH and was tempted to run.

I will write more as I am able.

[Caat55]

Hi Mike,
Wow this sounds incredibly complicated, frankly it is scary. I hope you figure some of this out for your own piece of mind and comfort. I know that there is no way I could do this and do my job, continue to push forward, right now, you are amazing. It is strange the odd aches and discomforts I am experiencing now. Do your legs feel uncomfortable, painful after long drives? Any joint pain?
Susan

[NHMike]

Hi Mike,
Wow this sounds incredibly complicated, frankly it is scary. I hope you figure some of this out for your own piece of mind and comfort. I know that there is no way I could do this and do my job, continue to push forward, right now, you are amazing. It is strange the odd aches and discomforts I am experiencing now. Do your legs feel uncomfortable, painful after long drives? Any joint pain?
Susan

The hard part is repeated going to the bathroom. I’m at 7 hour’s right now. The stools are firmer now which may explain why they are not coming out so fast. When they were soupy, it would be four hours. Still rough but I could sleep well after that. This bought is hard.

I didn’t have joint and leg pains outside of cramps from the chemo. But I’ve walked 850 miles in the past 10 weeks. My legs are like tree trunks.

[NHMike]

I was able to get four hours of total sleep over a 12 hour period. The time between events increased gradually to where I could get periods of 15 to 20 minutes of sleep. Things are still coming out 11 hours later but the time between is about 45 minutes now. I didn’t go into the office though did some work from home. I need to replenish supplies. I may go I. This afternoon.

I’ve eaten practically nothing for the pas 22 hours so this stuff has accumulated for at least several days. It reminds me of colonoscopy prep.

Depends aren’t useful alone. The CVS diapers cover the back. Depends doesn’t. I will have to use pads with Depends. I’m going to just buy the CVS diapers going forwards.

[NHMike]

... I'm going to start a book (or long article) on reversal issues. Just something to keep track of what I find and what I will be learning along with some of the things that I'm going through. I sometimes gather a lot of good information and a paper or book is a good way to keep track of things.

... I do wish that there was a book on just the reversal stuff. I have starting materials for such a book but I haven't started yet as I have an accumulating pile of stuff to do at work...

NHMike -
Thank you for thinking about writing an article or a book. A book or even just an annotated bibliography would be very helpful at this point for newly diagnosed rectal cancer patients.

What kind of format are you considering -- a literature review? a journal of personal experiences? a sort of Wikipedia article?

I hope you eventually get some free time to work on this project. It will certainly be a valuable contribution to the LARS literature when it comes to fruition.

One thing that I've learned about writing is to limit your subject or your piece may get away from you in terms of size.

I just wanted to focus on the Reversal aspect as the stuff before the reversal is complicated and changing and there's a very good knowledge base in this form already. A lot of people can answer questions for newcomers off the top of their head and they know how to guide the newcomer based on their introductory post and thread. I don't see that for the Reversal aspect.

I already ran into one literature review from Springer and that tells me that this is a very serious subject with at least a decent amount of research. I was leaning towards writing for the average person using a variety of sources, with citations of course. Something that's a blend on practical suggestions, what you'll be going through (in a range of experiences). I'd use a blend of recommendations from hospital websites and national health centers and peer-reviewed research.

My usual approach to writing is to grab a bunch of resources and then link them into the document so that I don't lose them and then try to figure out an outline and overall approach. I think that won't be too hard in this case.

I prefer to write long documents in LaTeX which is a SGML created by Donald Knuth in the 1970s to produce math and computer science textbooks. It gives you tight control over your document and it's good for writing articles, papers and books and it has a lot of support. The downside for most people is the steep learning curve. The modern WYSIWYG document programs like Word are easy to use for simpler things but they have a learning curve for more complicated things. I find that LaTeX makes it really easy to do citations and a lot of other things but it's more like programming than writing.

My big problem right now is that I'm spending so much time in the bathroom that it's hard to even reply to posts let alone gather my links and resources.

[cbsmith]

I know you are trying to use fasting to control your output but could that be causing you issues as well? The constant fasting and then eating and then fasting again may be confusing your digestive system and adding to the output issues. As well your colon probably needs a steady amount of food to allow to to retrain itself to functioning normally. Have you tried eating a number of small meals 4-6 times a day for a few days in a row to see what happens? Whatever you try to control the output it should be consisten and done for at least 3-4 days to get a good handle on how your body handles it.

[NHMike]

I know you are trying to use fasting to control your output but could that be causing you issues as well? The constant fasting and then eating and then fasting again may be confusing your digestive system and adding to the output issues. As well your colon probably needs a steady amount of food to allow to to retrain itself to functioning normally. Have you tried eating a number of small meals 4-6 times a day for a few days in a row to see what happens? Whatever you try to control the output it should be consisten and done for at least 3-4 days to get a good handle on how your body handles it.

The fasting may be an issue but I was eating more before yesterday.

The main difference yesterday was that stools firmed up which is ostensibly a good thing. The downside was that it caused a lot more irritation around the anus and maybe the skin around it or maybe even where the stitches are so there was bleeding which added to the irritation. I did mention what I was doing to the surgeon and I don't think that what I'm doing is that unusual a response. I am hoping that I can respond or the body can adapt to the change that it's made. But, for the moment, I do need to be able to get some rest.

Long term, it may help to be at normal weight (my BMI is currently 28) as that will require less food to sustain myself. I mentioned this to someone at work and he thought that I looked pretty good now. Dropping 25 pounds would put me at the high-end of normal with a waist-size of about 30.

So, yes, the fasting may be causing problems. But that's been a relative constant. The change yesterday appears to be the normal progression of improvement. I do have much better control. The problem is that I have to go to the bathroom so often. I should probably join that Facebook group to get a wider range of experiences as I know of other people that have done the same thing.

[ValZen]

Hi Mike, I'm glad to hear you're seeing improvement and your control is getting much better! That must be a relief, overall. I'm 3 weeks post-op now and find my daily routine is still all over the place, but know it goes with the territory. I'm back at work as well. I have days where I go 5-6 times and start feeling a bit cocky like "I can handle this! This is nothing..." ...then wham! The next day (like yesterday) I'm going every hour on the hour - just major clustering all day with strong urges. I alternate between the upstairs and downstairs bathroom at work so I don't feel so conspicuous. Fortunately, I've worked with my same co-workers for over 20 years and they're more like family. Today, I'm not having the strong urges and am more like every 2 hours. Go figure. I hope you can get some good sleep in there and today is a good day for you... It can be slow progress, but at least we're moving in the right direction! Take care.

[NHMike]

Hi Mike, I'm glad to hear you're seeing improvement and your control is getting much better! That must be a relief, overall. I'm 3 weeks post-op now and find my daily routine is still all over the place, but know it goes with the territory. I'm back at work as well. I have days where I go 5-6 times and start feeling a bit cocky like "I can handle this! This is nothing..." ...then wham! The next day (like yesterday) I'm going every hour on the hour - just major clustering all day with strong urges. I alternate between the upstairs and downstairs bathroom at work so I don't feel so conspicuous. Fortunately, I've worked with my same co-workers for over 20 years and they're more like family. Today, I'm not having the strong urges and am more like every 2 hours. Go figure. I hope you can get some good sleep in there and today is a good day for you... It can be slow progress, but at least we're moving in the right direction! Take care.

Glad you are doing well enough to work. I may stay home for the full day as a good chunk of it is over.

I alternate bathrooms as well between five of them. There are four additional bathrooms but they are some distance away.

The change yesterday resulted in pain if I held it in for too long which is why I kept going. This morning the pain is gone and I can hold things in for longer. But I don't know if that will remain the case.

[NHMike]

I wrote the first paragraph of the introduction. I find that it helps to put something down and get the document started as a placeholder.

[NHMike]

I took a long nap this afternoon after picking up supplies (diapers, wipes, toilet paper). My GI system was fairly quiet which helped in getting some overdue rest. I still need more sleep through.

[O Stoma Mia]

I wrote the first paragraph of the introduction. I find that it helps to put something down and get the document started as a placeholder.

Thanks for sharing the overview of your writing project.

Would you be open to suggestions regarding possible format, content, etc,? For example, I would like to see a LARS glossary at the end, etc..

- - -

BTW, it looks like your signature is out-of-date -- no mention at all of ileostomy reversal. When did that take place?

[NHMike]

Good sleep last night. Six hours solid (I had some long naps yesterday afternoon and evening too). Went to the bathroom and several came out; still relatively thin but longer than before. I picked up some fiber supplements yesterday too and will start taking those today.

[NHMike]

It's turning out to be a great day. I think that's the theme - great days and awful days. The GI system is behaving itself today.

All of those little niggles related to the surgery that affects the abs seem to be gone. Things like opening heavy doors, getting in and out of the car, getting in and out of bed are gone.

I'm carrying about 25-30 pounds of stuff into the office from the car these days, up from 20-25 pounds of stuff earlier this week. I'm careful how I carry it though.

Wound has a very small amount of stuff coming out per day.

I haven't really worked out today and I was undecided on running - just a little of course. I think that I will start some easy weight training after next week (that would make four weeks). Probably no abs stuff for another two weeks to be safe.

I brought some of the extra supplies to the office so that I'll have stuff for any problems here.