The Colon Club

You might want to talk to a WOCN and make sure you are comfortable managing your ostomy and wafer changes before you are discharged.

Nice Job Basil.
Glad surgery went pretty smooth for you.
As for the pain during walking. I had that too, but it gets better the more you walk the halls.
I was woken up about 5 hours after surgery to do my first walk. I recall being hunched over first couple days during walking.
Tried to straighten up a bit, but that was pretty painful.

It gets better each walk.

cheers,

Went through training with the WOCN and will make my first bag change Friday at MDAnderson. The post-op care hear has been wonderful. I'm feeling much better than I did just a few hours ago although it feels like someone hit me in the stomach with a hammer. The pain meds help with that.

Wound, Ostomy and Continence Nurses Society - I had to look that one up.

Congratulations on your surgery,
Sorry you ended up with a temp bag butt hey its a small price to pay for have a shot at being cancer free.
You will be pretty sore for a couple weeks. Butt as I recall I don't think it was that bad. Having some one help pull you out of bed or a chair is a big help. I think I rigged a rope on my bed to use my arms instead of stomach mussels.
my initial staging was 3c butt after surgery I was a 2. My Onc. went with the initial staging so i had to do nine rounds of post chemo. I think if you had lymph nodes involved it 12 rounds.
Walk when you can and chew gum. I was instructed to chew gum to help wake up the intestines.
Good Luck

NHMike wrote:Wound, Ostomy and Continence Nurses Society - I had to look that one up.

Ha ha, Those people are worth there weight in gold

Early on soon after my surgery, I developed an itch around my stoma. Surgeon told me to try a certain product, oil based, bad for keeping wafer on. She also set me up with an Ostomy nurse, ASAP!

Onc told me to try some other product, also oil based. I did learn from her that jock itch, yeast infection and athlete's foot are all caused by the same fungus. Anyway, saw the WOCN nurse with in a few days. Informed me oil based produces are bad (Gee no kidding). Put some powder on my stoma, INSTANT relief! Also told me ways to avoid getting stoma wet and avoid itchy break outs.

Basil, good luck recovering from your surgery. Remember to walk, walk, walk, those halls.

Lee

Thanks all - I'm home now. Total time in the hospital was a little over 48 hours. I'm still sore but it's improving. My family, who spoke to the surgeon while I was recovering, said I looked great and further chemo was likely unnecessary. The only conclusion I can draw is they think I'm stage two after surgery, but I don't really know. We'll discuss next week when pathology comes back. Obviously, I would love no more chemo and it would get me a reversal before the holidays. I'm just crossing my fingers.

Basil wrote:Thanks all - I'm home now. Total time in the hospital was a little over 48 hours. I'm still sore but it's improving. My family, who spoke to the surgeon while I was recovering, said I looked great and further chemo was likely unnecessary. The only conclusion I can draw is they think I'm stage two after surgery, but I don't really know. We'll discuss next week when pathology comes back. Obviously, I would love no more chemo and it would get me a reversal before the holidays. I'm just crossing my fingers.

This sounds like a fantastic result for surgery - especially in your only having to stay for two days. I hope that I can recover that fast but I have the feeling that I'm going to wimp out with a longer stay. In the meantime, I'm working on physical conditioning to decrease the odds of complications.

Biopsy came back and I had a complete pathological response to preadjuvant chemo. Since rounds of FOLFOX completely destroyed the tumor. 41 nodes all negative. I am officially NED and require no further chemotherapy.

Wow--that is freaking awesome! With responses like that perhaps there will be more rectal cancer patients wiho go the Prospect Trial route like you did. So so wonderful, thanks for sharing and soak it in--your chemo days are done!

Basil wrote:Thanks all - I'm home now. Total time in the hospital was a little over 48 hours. I'm still sore but it's improving. My family, who spoke to the surgeon while I was recovering, said I looked great and further chemo was likely unnecessary. The only conclusion I can draw is they think I'm stage two after surgery, but I don't really know. We'll discuss next week when pathology comes back. Obviously, I would love no more chemo and it would get me a reversal before the holidays. I'm just crossing my fingers.

A reversal is possible as soon as your wounds heal, and you can accept waste without leakage. In my case, I did it 3 weeks later, as the bag and I didn't get along well. The surgeon decided I was not absorbing enough liquid, and decided to reverse quickly, and also because I had a blockage, created during surgery. Going to talk like a Texan now, when they throw all your innards, onto the table to look for cancer sights, they surmise the problems, cut where they need to, and shove all your innards, back inside There is no particular order or diagram, that they can study. So out it comes, and stuff it back in ! As a living example for over 5 years since surgery, you can do chemo without a bag. Why waste another few precious months of Insurance out of pocket costs, to not finish before the end of the current year. If you feel you need more chemo, then certainly make that choice! In my case I kept my eye on the fiscal year, and saved a ton of out of pocket costs.
Regards,
Michael

That's an outstanding result and I'm very happy for you and your family and hope that you have a nice celebration over the fantastic news.

Basil wrote:... Obviously, I would love no more chemo and it would get me a reversal before the holidays...

Basil - Congratulations on your fantastic results from the PROSPECT trial, and the 'no chemo' decision going forward.

I just have a few comments to make here:

First, since you will have a stoma bag now until the time of your reversal, each month you are on the stoma bag your voluntary sphincter muscles will not be used much at all, and there may be significant loss of sphincter muscle tone over the next few months. It may be advisable for you to embark on a program of daily Kegel exercises in order to maintain your original level of muscle tone:

JudeD59 wrote:... I have good control (thank you Kegal exercises during the time I had temp ileostomy!)...

You would have to do these exercises daily before reversal, not after.

Second, after your reversal you should seriously consider following the "Survivorship guidelines" for the long five-year followup period. MD Anderson has a set of these guidelines:

https://www.mdanderson.org/documents/for-physicians/algorithms/survivorship/survivorship-colon-web-algorithm.pdf

https://www.mdanderson.org/education-training/professional-education/professional-oncology-education/survivorship/colorectal.html

So does the American Cancer Society:

http://onlinelibrary.wiley.com/doi/10.3322/caac.21286/full

And of course, so does NCCN:

PRINCIPLES OF SURVIVORSHIP - Colorectal Long-term Follow-up Care (page 45)

http://www.richclinics.com/upload/201701/16/201701161318414890.pdf


Since you already have connections with MD Anderson, it might also be a good idea for you to request an appointment with someone in their Bowel Management unit, since that unit has a good reputation and a very good set of guidelines for managing post-reversal bowel problems.

https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/bowel-management.html

Basil wrote:Biopsy came back and I had a complete pathological response to preadjuvant chemo. Since rounds of FOLFOX completely destroyed the tumor. 41 nodes all negative. I am officially NED and require no further chemotherapy....
...
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here) ...

Good luck on your upcoming reversal surgery. Before having your reversal you will probably have to have a "leak test":

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53593&p=426108#p426107

Oh great, another fun procedure to look forward to! Oh well, I'll break out one of those painkillers they gave me after surgery and soldier on. Nothing to be done.

Thanks for the heads up though. Would have sucked more to get there and ask, "You're going to do WHAT? Ahhhh . . ."