Another Colon Cancer Newbie

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Colonless in NY
Posts: 21
Joined: Tue Aug 03, 2010 4:49 pm
Location: Brooklyn, NY

Another Colon Cancer Newbie

Postby Colonless in NY » Tue Aug 03, 2010 4:59 pm

Hi all:

I've been lingering on here for a few weeks now. From what I can see, this is the single best resource I've seen online for colorectal cancers. The forums on this board have provided me with a wealth of information and a couple of really good laughs as well. I'm full of questions and apologize if anything I ask has already been covered on the board.

By way of introduction, I'm a 43 year old woman who recently (July 1, 2010) had a total abdominal colectomy with ileorectal anastomosis. The surgery went well and I'm fortunate that none of my lymphnodes were infected. At age 41 in 2008, I had endometrial cancer (Stage IIIc) and underwent a total hysterectomy, pelvic radiation and 3 months of chemotherapy. Soon after my hysterectomy, I had genetic testing and learned that I have Lynch Syndrome (HNPCC), so the colon cancer was not completely out of the blue. I just didn't think it would come as fast as it did.

The recupertion for the colectomy has been hard. Draining -- and I mean that quite literally as well as emotionally. I have anywhere from 12 to 25 bowel movements a day. Everything I eat passes right through. I also have a weird sensation in my rectum after a bm (which are always watery) that there is something else there, something more that wants to come out. But there is nothing there. The pain is excrutiating when this happens. I've been checked and there is not any type of blockage and the surgeon says I'm healing well. Has anyone else out there experienced this? Also, in terms of nutrition, I'd love to hear your thoughts, tips, etc. I'm a relatively healthy eater. I was recently given the green light to start to re-incorporate vegetables and fiber back into my diet, which I've been doing slowly. Truthfully, everything has the same effect on me. I can eat a piece of white toast or a piece of broccoli and, regardless, I'm back in the loo 20 minutes later.

For those of you who've had colectomies, how long before your bm's were back to normal and / or had some type of formation? What are your energies level like? I will return to work in mid-September, 2 1/2 months after my surgery and I'm already filled with an enormous amount of anxiety about how my bowel management will be.
-Colon cancer, Stage I @ 43
-Total abdominal colectomy with ileorectal anastomosis (July 2010)
-Endometrial cancer, Stage IIIc @ 41
-Hysterectomy w BSO, Sept 2008
-28 sess pelvic rad + chemo of Taxol/Carboplatin (Oct. 2008 - Feb 2009)
-Lynch Syndrome

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Jon Olis
Posts: 252
Joined: Mon Jun 02, 2008 3:04 pm
Location: Laguna Niguel, CA

Re: Another Colon Cancer Newbie

Postby Jon Olis » Tue Aug 03, 2010 10:09 pm


I'm a 6 year cancer survivor from Stage IIIC colon cancer and FAP. I have an IRA like you. Sounds like you are about 4 weeks out from surgery which is not a lot of time. The digestive tract is such a fragile system that gets upset from the surgery. My experience is things continued to improve for a few years. For me, early on, things were all liquid and I had similar sensations where something needed to come out but nothing was there. I think its just inflamed or something from the acidic nature of the output. Here's some things I'd recommend right away.

- Buy metamucil wafers and start eating 1-2 wafers with each meal
- start taking immodium 2 pills in the morning, 2 at night to slow things down.
- go online and buy some calmoseptine lotion to put down there to protect the skin. Its a barrier so you use it before problems start and it helps a lot for the pain.
- go to this website and learn about the differences between soluble and insoluble fiber. Soluble fiber is what you want now. Soluble fiber absorbs liquid and you have too much liquid output. Your colon used to take the water out and the small intestine will pick up these duties eventually but that takes time. Here's the website...

Other recommendations I've heard is to eat the wafer but don't drink lots of liquids with a meal. Wait at least a 1/2 hour. I don't really follow this one but it makes sense.

With time you can get off the Imodium, you won't need the calmoseptine. I still take the metamucil but am actually experimenting not taking it now (2 days so far) since I'm out and more is on order but won't be in for a week.

For me, the IRA has been very manageable. Hopefully my suggestions will get you moving in the right direction (or get things not moving, pun intended :D ). FYI, I mountain bike ride/race and I'm on the bike for 2+ hours at a time in the heat. I hydrate fine and don't ever find I need a bathroom. Eventually you will just get used to your new normal but trust me, you aren't there yet. Feel free to PM me for more info. I'm happy to help any way I can.
Jon Olis
2009 Colondar Model
Diagnosed 6/04 Stage III CC, 7/16 Nodes, FAP
Subtotal Colectomy 6/04 failed,Ileostomy 6/04
Ileostomy Rev 1/05
Laser Endoscopy 8/05 perforated duodenum
Emergency surgery to repair perforation
Currently 9.5 years NED!

Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: Another Colon Cancer Newbie

Postby SkiFletch » Wed Aug 04, 2010 7:47 am

No experience with a total colectomy here, but I did just want to welcome you to the board and say we look forward to sharing with you :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Joined: Wed Jul 21, 2010 9:19 am
Location: Chicagoland Area

Re: Another Colon Cancer Newbie

Postby MarkS. » Wed Aug 04, 2010 10:24 am

Hang in there. I also found myself going to the bathroom quite a few times immediately after the surgery (almost 8 -10 times a day), and was starting to get a little distressed about it. I spoke to my Onc and he said that that is quite normal after the surgery and it can take 4-5 months to get to my "regular" pattern. Of course each person heals differently.

I'm been keeping a journal ever since my surgery and I am now down to 3-5 times a day (I'm 7 weeks out). Each day gets better......
5/2010 DX'd Sigmoid CCr
6/2010 Colectomy. Sigmoid Colon
Stage 3C.T3 N2 M0; 6/14 Lymph Nodes
8/2010 FOLFOX: 12 Rounds
6/2011 NED
8/2012 Avastin/5FU Lung Mets
3/2013 CT/PET Normal
6/2013 Xeloda/Avastin Maintenance
2/2014, 9/2014 CT/PET Clear
4/2016 17mm Lung Met
5/2016 CyberKnife
6/2016 85% Tumor Reduction

Posts: 132
Joined: Wed Jan 20, 2010 2:17 pm

Re: Another Colon Cancer Newbie

Postby mymaria » Wed Aug 04, 2010 12:25 pm

Welcome!!! I was 43 last summer when I was diagnosed with uterine cancer (stage 1B grade 3) and had the radiation treatments also. Four months later, I was diagnosed with colon cancer, stage 2A. I also have Lynch Syndrome. Welcome to the forum!!! Not glad you have to be here, but glad you found us!
Endometrial cancer stage 1B grade 3, July '09 age 43
34 negative l.n.
Radiation Aug. and Sept., '09
Colon cancer T3N0M0, grade 3, Dec. '09
54 negative l.n.
Modified Folfox 6 regime started Jan. 12, '10
Stopped after 3 rounds Feb. 9, '10
Lynch Syndrome

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Posts: 5536
Joined: Wed Oct 03, 2007 10:36 pm
Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: Another Colon Cancer Newbie

Postby Terry » Wed Aug 04, 2010 2:34 pm

I can't believe all of the newly diagnosed people, it's unbelievable! I'm really sorry you and all of the other new ones have to be here.

I didn't have your type of surgery, I had an excision but even with that I remember having that feeling of never feeling like I had expelled everything and it was a little painful for me but not a lot. It did get better though, one day I woke up and it was gone, I'm sure that's probably what will happen to you also.

Good luck through your journey and if you have any other questions or just need to vent, we're here for you.

DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

Colonless in NY
Posts: 21
Joined: Tue Aug 03, 2010 4:49 pm
Location: Brooklyn, NY

Re: Another Colon Cancer Newbie

Postby Colonless in NY » Thu Aug 05, 2010 5:47 pm

Thanks everyone. The nutritional tips regarding soluble vs. insoluble fiber have been especially helpful. I've spent the past two days adhering more closely to a soluble fiber diet, which has been much kinder to my body. Also, the Metamucil wafers have been a terrific supplement. Things a slowed down just a little, which, as far as I'm concerned, is huge.
-Colon cancer, Stage I @ 43
-Total abdominal colectomy with ileorectal anastomosis (July 2010)
-Endometrial cancer, Stage IIIc @ 41
-Hysterectomy w BSO, Sept 2008
-28 sess pelvic rad + chemo of Taxol/Carboplatin (Oct. 2008 - Feb 2009)
-Lynch Syndrome

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Posts: 65
Joined: Sat May 22, 2010 6:13 am
Facebook Username: Given Upon Request
Location: Rhode Island

Re: Another Colon Cancer Newbie

Postby Sinfulsot » Thu Aug 05, 2010 10:50 pm

A fellow brooklynite. Well, I escaped from NY, and am now in RI.
And now something so wonderful, you could get wonderful poisoning.

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