The Colon Club

NHMike wrote:

O Stoma Mia wrote:

NHMike wrote:Could you send me a link ... ? I wouldn't mind seeing what a lot of other people are doing in real time....

Reversals-Ileostomy/Colostomy Reversal Discussion And Support
https://m.facebook.com/groups/319210318267068/

Living with Low Anterior Resection Syndrome
https://m.facebook.com/groups/786555674854989/

I submitted a join request. I've never had a FB account before because of privacy concerns so I set up something of a sandbox along with a lot of redirection to try to protect privacy.

I might not be able to join. FB is already asking a lot of personal information which I'd rather not give out to them.

NHMike wrote:... I might not be able to join. FB is already asking a lot of personal information which I'd rather not give out to them.

I understand. This is why I'm not on FB.

I have a few friends who haven't joined for the same reason. It's understandable. I joined way back in 2007 and mostly just have family/extended family and a few close friends. That's unfortunate they do that - especially with new people wanting to join for the support groups.

A fairly good day today.

I spent a moderate amount of time in the bathroom but none of the four hour marathons today.

One of my responses to LARS is caloric restriction. I weighed myself Tuesday night at the hospital and I'm down 13 pounds since then (11 days). This is obviously not sustainable in the long run and it may even be counterproductive as the GI system may respond better with more going through it. But it does somewhat make life easier.

ValZen wrote:I have a few friends who haven't joined for the same reason. It's understandable. I joined way back in 2007 and mostly just have family/extended family and a few close friends. That's unfortunate they do that - especially with new people wanting to join for the support groups.

It's understandable because there are no hosting costs.

Our town discussion board used to be a phpBB board just like ColonTalk. Someone paid for a webhost and ran the board. Running a board can be a fair amount of work as you have to deal with software updates, attacks, and handling member requests. With a FB forum, I think that FB does everything for you so it's a lot easier from a management perspective. They get paid with your personal information. I do have my own webhost and could set up a phpBB forum or a simple email list (I've done both in the past). I think that I'd have to upgrade my account, though, if a lot of people signed up. Colon Talk would seem like a natural place to have LARs discussions though, perhaps in a different forum. It might not pick up the folks with Reversals that aren't coming in from a cancer or colonoscopy perspective.

I'm going to do some research on LARS solutions now that I have something to search on and given that I am VERY highly motivated to get a list of potential solutions.

I don't like that about FaceBook or the internet in general. You look something up and two minutes later there's an ad trying to sell you the same thing you were researching. Hmmm.

Colon Talk does have a wealth of information with its own members. That's a good idea to maybe have a separate forum for LARS as there are so many people dealing with it at various stages. It's also great reading the updates from people who are successfully managing it.

That's good to hear you had a better day today! That's encouraging! I did too - although today I still made 5-6 trips with hardly anything at all so now I'm thinking I'm over doing it on the low fibre/low residue diet. It seems like such a balancing act. We'll get there!

NHMike, I totally feel you. I DETEST Facebook. From the beginning. Never trusted the platform. And as it turned out...I was correct!

However...for this situation, the COLON TOWN groups are an incredible resource. I've read up so much on everything, including LARS. You will get a lot out of it.

My foray into CRC research began with the three main publicly accessible message boards (Colon Talk, Cancer Compass, Cancer Survivors Network). All invaluable for a beginner. COLON TOWN takes all of that to another level.

As much as I can't stand FB, there's no choice in this case. COLON TOWN is a must.

On a separate note, I want to thank you for sharing all your experiences, from the beginning. I hope you will continue to do that here, even if you end up on FB. I wish you all the luck in resolving the current situation to the best possible outcome.

FightCRC wrote:NHMike, I totally feel you. I DETEST Facebook. From the beginning. Never trusted the platform. And as it turned out...I was correct!

However...for this situation, the COLON TOWN groups are an incredible resource. I've read up so much on everything, including LARS. You will get a lot out of it.

My foray into CRC research began with the three main publicly accessible message boards (Colon Talk, Cancer Compass, Cancer Survivors Network). All invaluable for a beginner. COLON TOWN takes all of that to another level.

As much as I can't stand FB, there's no choice in this case. COLON TOWN is a must.

On a separate note, I want to thank you for sharing all your experiences, from the beginning. I hope you will continue to do that here, even if you end up on FB. I wish you all the luck in resolving the current situation to the best possible outcome.

Thank-you for your comment on quality. I will keep an open mind on FB for now while looking around for LARS solutions outside of them.

My sister sent me the name of a world-renowned PT in Boston and I will give her office a call on Monday to see if she can help or provide a reference to someone else in the area that can help (she trains a lot of other PTs).

NHMike wrote:.... Colon Talk would seem like a natural place to have LARs discussions though, perhaps in a different forum. It might not pick up the folks with Reversals that aren't coming in from a cancer or colonoscopy perspective.

NHMike wrote:... I will keep an open mind on FB for now while looking around for LARS solutions outside of them...

This is the approach I took. I had a list of technical keywords related to LARS and I looked around here and elsewhere (but not on FB) to compile a list of useful documents, blogposts, and webpage links for my own personal use.

NHMike wrote:I think that he should have said NED.

He also said that he learned a lot from me.

The CEA number this morning was 2.8. Normal is equal to or below 3.8. It was 2.8 when I was diagnosed but I was running a lot back then. It appears that the CEA is more of an indicator of my activity level than it is of cancer.

Congratulations on your NED status and on being able to help your oncologist learn a few things. Paying it forward while receiving treatment is fantastic.

mob

Yesterday was an unusually good day. As I speculated earlier, I would have very good days and very bad days.

I felt the urge to go six times Sunday morning and made it to a bathroom within five to twenty minutes and things worked out fine. Sometimes I didn't make it in the evening but those things were small. I only used on diaper in the 24-hour period from Sunday morning to Monday morning though I did go through several pads. But I've usually used far more diapers per day. So control was decent for half a day. And I'm getting more efficient at the bathroom stuff.

This morning, I had to drive for an hour and I spent about 2 1/2 hours in the bathroom early in the morning before that and I grabbed the seat cushion from when I had radiation to make the drive more comfortable. Things worked out better than I expected them to. These bathroom things seem to last around four hours and maybe that's something to do with how the large intestine drains. It's not a fun time, especially if you have to be somewhere at some time.

The post-op meeting with the surgeon is tomorrow and it's one-hour in and one-hour back home so today is a dry run for tomorrow. I have quite a bit of issues at the moment and I don't know if it will just take time or if she will offer techniques such as PT to help. I will send her a note today asking about PT as it I would think that it would be in her department unless they are structured functionally. I have a PT person to contact at Mass General and she's supposed to be world-class but I don't know whether or not it's bad form for patients to see another doctor for something that your current doctor's organization also does. Mass General and Brigham and Women's are both part of Partner's Healthcare but they operate independently for most things.

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.

Saw the surgeon today. She said the first month is the worst and that full recovery will take a year (!!!). I mentioned this to my manager and she said that makes sense. My manager has Crohn's and it would take her body two years to recover from a flare-up.

Wound looked fine. She said I could stop bandaging it in a week. She snipped the sutures (didn't know that they were in there).

I asked about PT and she said that it's too early for that. Maybe three months if things aren't working better.

She suggested 1, 2, or 3 servings of fiber to hold the small pieces together better. She also suggested Immodium if I need to quiet the digestive system for an event.

So this stuff is normal. Wish I knew this before surgery - I could have maybe planned better.

You know Mike, even if we are told our bowel movements will change, I don't think we really understand the extent of it until we go through it. We just think we are going to be going a little more often. Removing the rectum really changes the way the intestines work and since there is no holding tank left we go alot more often. The colon will stretch somewhat but will never be able to perform like the rectum did. Doctors will mention things will change, but it is never known how the body will react until the reversal is done. Some do really well right away, others just need time, some use diet and/or fiber, imodium and lomotil. Then there are some that really never get to a place that is manageable. It is very frustrating, but you are so early and it does take a few months to a year to get to the point that you know where you will be and learn how to manage. I know it is so frustrating, it all depends on how much rectum is left. You seem to be handling things pretty well though, and I am sure you will see improvement weekly.

Congratulations on your good news Mike! Cured is priceless!