Sister about to Get Colostomy Bag--Advice?

Please feel free to read, share your thoughts, your stories and connect with others!
katrinab
Posts: 2
Joined: Wed Apr 24, 2013 8:18 am

Sister about to Get Colostomy Bag--Advice?

Postby katrinab » Tue Aug 13, 2013 2:32 pm

My sister (Kathryn) has been somewhat active on this board for a while. I have been content as a caregiver to just lurk a bit. Her surgery was in April and she started chemo in May and is 3 months into treatment with 3 months left---however, today was a big change in plans: she found out she has a blockage at her anastimosis (sp?) site---basically a build up of scar tissue and is going in for emergency surgery tomorrow in which they will put in a colostomy bag. This is a huge change in how we thought her treatment would go and we haven't had a lot of time to process or research or figure things out. Any advice welcome.

Katrina
Sister of Kathryn,
....Stage 3C, Colon Cancer

User avatar
eitter
Posts: 1018
Joined: Sun May 21, 2006 3:53 pm
Location: Tempe, AZ
Contact:

Re: Sister about to Get Colostomy Bag--Advice?

Postby eitter » Tue Aug 13, 2013 3:16 pm

I have had a Colostomy for 6 years and my first year it was an Ileostomy. There are some here that have an Ostomy but the wealth of information is found on the United Ostomy Associations of America website http://www.ostomy.org.

It is very scary at first to have one and I cried for days and fainted the first weeks I had to change it, but now it is a part of me and NO PROBLEM to take care of!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Sister about to Get Colostomy Bag--Advice?

Postby NWgirl » Tue Aug 13, 2013 4:54 pm

#1 - make sure she finds a GOOD WOCN (Wound & Ostomy Care Nurse); they are literally worth their weight in gold.

#2 - be supportive of her and her new body. This isn't something she chose, but it's what she has to do to stay alive. It is what it is - make sure she is surrounded by people who assure her that they love her for HER - and not what her body is or isn't.

#3 - as Liz said, go to the ostomy forum - great advice, great people, great support. It lets her know she is not alone - there are thousands of people like her all over the place. It will help her realize that she can lead a full, happy, productive life - with an ostomy!

#4 - If she is so inclined, I did a 3 part blog on my choice to ultimately opt for a permanent colostomy, after my reversal surgery failed. Here's links to the blog's if she wants to read them.
http://www.colonclub.com/2012/06/the-co ... rt-1-of-3/
http://www.colonclub.com/2012/06/the-co ... um-part-2/
http://www.colonclub.com/2012/06/the-co ... 93-part-3/

I've had my colostomy for 2 years now and I couldn't be happier. I know when you first hear the news that you'll have to have an ostomy it may feel like your life is over. This is SO not the case! Just be there to support her and love her and help her through this challenging time in her life. Surround her with love.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Sister about to Get Colostomy Bag--Advice?

Postby kellywin » Tue Aug 13, 2013 5:09 pm

Katrina,

I have not words to offer other than to please tell her I am thinking of her! We have been communicating and I am so devastated to hear this. I can not imagine how she's feeling and how this would be such a shock to her when she was already set into the path to finishing chemo, to have this thrown in must be so difficult.

Kelly
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

Debby
Posts: 45
Joined: Mon Jul 18, 2011 5:37 pm

Re: Sister about to Get Colostomy Bag--Advice?

Postby Debby » Wed Aug 14, 2013 11:27 am

It just takes time to get use to it. It has been a little over 2 years since my surgery and I would say it took a year to get use to the colostomy. Leaks, explosions, constipation, figuring out the best pouch, etc. Always have extra supplies with you..........
56 Female
3/11 diagnoised colon cancer
4/10/11 colostomy
4/11-6/7/11 chemo & radiation
8/18/11 surgery to remove tumor
9/12/11 started chemo: Oxaliplatin, leucovorin & 5FU
2/13/12 finished chemo
dealing with neuropathy

Debby
Posts: 45
Joined: Mon Jul 18, 2011 5:37 pm

Re: Sister about to Get Colostomy Bag--Advice?

Postby Debby » Wed Aug 14, 2013 11:31 am

Also good info on the UOAA discussion boards.
56 Female
3/11 diagnoised colon cancer
4/10/11 colostomy
4/11-6/7/11 chemo & radiation
8/18/11 surgery to remove tumor
9/12/11 started chemo: Oxaliplatin, leucovorin & 5FU
2/13/12 finished chemo
dealing with neuropathy

User avatar
Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Sister about to Get Colostomy Bag--Advice?

Postby Guinevere » Wed Aug 14, 2013 11:38 am

I was fortunate in that everyone around me knew at least one person with an ostomy and so they acted like it was no biggie for me to have one. Me? I was more devastated at having the colostomy than I was when I got the stage 4 cancer diagnosis. People gave me the space I needed to come to terms with it. It took a couple of months but I did get there. In fact, learning to laugh about the foibles that can happen with the ostomy helped reconcile me to the fact that this was the way it was going to be for the rest of my life. That and remembering the last few months before my surgery and how much pain I would be in just trying to have a bowel movement. The board at www.ostomy.org was a lifesaver for me. It taught me to laugh at the things that happen and I also ended up naming my stoma (Wendy) which, in turn, helped me accept the ostomy. I hope this has helped.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

User avatar
raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: Sister about to Get Colostomy Bag--Advice?

Postby raym » Wed Aug 14, 2013 2:24 pm

I was given a colostomy after my second cancer surgery (HIPEC). It has become quite manageable. As I write this I am sitting in a condo next the beach (Ocean City MD) and have been in the surf and even rode some waves. I still workout at the gym, and ride my mountain bike. Would I rather not have it..sure...but in the grand scheme of things its not so bad. The worst pain this week has been walking to the ocean side from the condo, only to shorty head back to the room as my bag became full.
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

Staci's team
Posts: 386
Joined: Fri Sep 25, 2009 9:43 am
Location: Canfield, Ohio
Contact:

Re: Sister about to Get Colostomy Bag--Advice?

Postby Staci's team » Wed Aug 14, 2013 8:48 pm

I'm not the one with the colostomy -- my wife is. That said, over the past four years I've learned a good bit about it and how she feels about it. At the beginning, there was indeed the dread of "I'm too young for this!" That quickly changed to "it's a bag or my life," and I'm not trying to be simplistic about it or play down the emotional challenges that the idea of a colostomy brings, but rather let you know the way she approached it. I fully realize that everyone has their own opinions and ways of wrapping their heads around the idea of an ostomy, so I'd encourage you to take your lead from her as you help her to become accustomed to the "new normal."

If it helps at all, I can tell you that last summer -- two and a half years out from her surgery -- Staci finally said "darnit, I don't care what others think, this is ME!" and started wearing a bikini again. We spent last week in NC and her ostomy didn't slow her down at all, as the picture below can attest.

Image

It takes time to get used to an ostomy, both the idea of it as well as its daily care. For many, an ostomy has helped to bring back a sense of normalcy or of not being tied to a bathroom, as Belle notes so well in her blog entries. Those who have ostomies (or those who are close with people who have ostomies) are here to give your sister (and you) all the help and support you'll need.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

katrinab
Posts: 2
Joined: Wed Apr 24, 2013 8:18 am

Re: Sister about to Get Colostomy Bag--Advice?

Postby katrinab » Thu Aug 15, 2013 11:37 am

Wow! Thank you all for the wealth of advice and loving support. As you all know, treating and dealing with cancer involves a lot of whiplash changes---by the time I got my car packed to drive the 4 hours to where she would be hospitalized and had been on the road for 2 hours, plans had changed yet again. We aren't totally "out of the woods", but her doctor ended up doing a balloon dilation to see if she can get Kathryn back on chemo quickly without the stop for a surgery---the procedure was (at least for now) successful---and so no bag now. But we also know these dilations don't always last so Kathryn will be checked again in a few days---the possibility of a bag is still very much in her future. For now we are enjoying her reprieve not to mention the HUGE physical relief getting her colon open and working again has been---I don't know if I have ever truly appreciated how horrible "simple" constipation can be when it goes on long term. After the procedure Kathryn felt the best she's felt since she started chemo! Anyway, reading over this helped me a lot. There's every possibility that a bag will become a necessity and now I feel like I have at least some ideas about how to support her emotionally and physically. I have been very grateful for this list serve because as much as I love and try to support my sister---there's nothing like advice from those who have been through the same situation.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 3 guests