Hi,

Hope everyone had a wonderful holiday w/their loved ones. I sure did. I was so thankful to be home w/my boys...and to be able to eat again!

I have a couple of questions for you veterans out there...

1. Is it normal to be leaking yellowy-brown stuff nearly constantly out of my bum when I have an ileostomy? I thought I was diverted and aside from some post -surgery drainage I was good to go? Lately whenever I stand up or am walking around large gobs of goo are coming out w/no warning. Pretty gross, but didn't know if it warranted a call to the doc or not.

2. I am meeting with my oncologist on 1/5 to plan post-op chemo. I had a T2 lesion, poorly differentiated, most likely no lymph nodes, but because of preop radiation/chemo we can't say 100%. I think he wants to do folfox, but I've been reading that some of you have done other treatments... I'd like to know what options are out there before I go in for my appointment, if possible.

Thanks in advance for the advice. Hope you are all well!

Cats

Cats:
I'm glad you had an enjoyable holiday with your family! You deserve a break.

As far as your questions:

1? No need for alarm. This is left over blood and mucous and nasty stuff from the surgery. And, your bum will continue producing mucous for a while! I know it's nasty, but just keep the area clean. Also, I know it may sound uncomfortable, but use a gauze pad and put in your cheeks. It feels a little weird at first (I'm a guy though, and have never experienced thong panties... don't know your underwear habits!) After a while, though, I found a way that if you just fold it over once, and not crunch it up, it really was un-noticable. This also beat the diaper, because you would have all this stuff sitting in between your cheeks... not a pleasant experience. So, sorry for being graphic, but gauze pads are the way to go.

2) There ARE different chemo regimens out there, but here is my stance. When it comes to mixing the agents, your oncologist REALLY IS the expert regarding what he/she feels is best given the histology of your lesion-- for example-- your lesion was poorly diff, which is a pretty aggressive, fast mover... although, you were T2, so no invasion through the wall... BUT oncologists will do a clinical staging, and actual staging. They take into account the fact that you had radiation, which killed back the cells, and I think you said no nodes were positive (which is GREAT!), but they may upstage you to a T3 based on your Trans Rectal Ultrasound and CT scans prior to radiation, together with the info they obtained from the surgery. Bottom line is, there is no "perfect" cocktail of chemo drugs to give. It's a crapshoot... a best guess, and only your onc. has access to all the info... you too, I'm sure, but we're not the treating oncs! So, go prepared with a list of questions about what you can expect from your regimen, WHY he/she is advocating this regimen, how long you will require, when they will conduct follow-up tests, and what options are available to you NOW should something recur and this not work.

I hope all this makes sense. And I don't mean to alarm you. You have EVERY reason to believe that all will be fine based on your pathology report, and the facts that although the cancer tends to be aggressive, you caught it early enough that it did NOT enter the lymphatics or circulatory system.

GOOD LUCK!

Please let us know if you have any other questions.
Fondly,
CancerDad

Thank you so much CD for the quick reply. I appreciate the advice and will try the gauze right now...beats running to the bathroom to wipe my bum more than I'm wiping my son's runny nose!!

Thank you also for the advice regarding the chemo. My oncologists suggestion of folfox was what he thought he'd do before he saw the pathology report. I wonder if he will change his mind after seeing the report. I am DREADING starting treatment again since I still don't feel quite myself from the surgery...still get tired easy, sore, etc. On the other hand, I just want to get it over with, so that I can enjoy this summer.

Thanks again...take care,
Cats

Cats:
I know how you feel... remember, it does take a WHILE to get back on your feet and a LONG time for your body to heal. You probably will feel tired for a while. Heck, I STILL do. This changes EVERYONE in ways I don't think anyone can explain. Just take it day by day, keep your chin up, and you'll get through.

Happy 2006!
Fondly,
CDad

Cats:
As I had a day today with gauze, I thought of you and was wondering if it was working out for you. How are you doing?

Fondly,
CancerDad

Hi,

The gauze was uncomfortable at first, but certainly did the job. As I am having some slight bleeding from the hysterectomy I moved to pads...something you surely don't have experience with (!!) but they help!

Thanks again for the advice! Sorry you are having a gauze day! Does it ever go away??

Take care and good luck!
Cats

The colorectal surgeon says eventually the lower colon shrinks up and dries up for the most part, but that there will be those days... the gauze can be uncomfortable like I said before, unless like I found you DON'T fold it...keep it as thin as possible.

I actually was forced to use pads, and diapers too! But found it so irritating having this stuff sit there all day. The colorectal surgeon was the one who taught me the trick with the gauze... but it can't be folded or bunched. But whatever works for you. Thinking back to my early days, I'm certain it will be more comfortable for you soon.

Good Luck and Happy New Year!
Fondly,
CDad