those of you with a colostomy

Please feel free to read, share your thoughts, your stories and connect with others!
betula
Posts: 4
Joined: Sun Jun 11, 2017 10:38 am

those of you with a colostomy

Postby betula » Sat Jan 20, 2018 6:55 pm

My husband was diagnosed Dec 2016 with rectal cancer. This resulted in a permanent colostomy. He had been doing pretty well with it until recently. I think he had reached the anger stage and is coming to terms with the fact that this thing is not going away. He has been under a lot of stress lately too with interviewing for a new job which will put him in a position that is less physically demanding and therefore be able to work longer and not go on disability. This stress has not helped his frame of mind either.

I know everyone goes through these stages at their own pace but just wondering how long until you really came to terms with this life change. At this time he is doing well healthwise in terms of the cancer but this colostomy is taking its toll on him now.

Any suggestions on how to help him cope are welcomed.

Betsy

Lee
Posts: 5505
Joined: Sun Apr 16, 2006 4:09 pm

Re: those of you with a colostomy

Postby Lee » Sat Jan 20, 2018 10:06 pm

Did he know he was going to have one prior to surgery?

I came to terms with mine prior to surgery. For me, it gave me my life back. With in weeks of radiation, I started having BM accidents. Don't remember when it happened, butt at some point I realized I could not eat until I was home for the day. Living with uncontrollable potty accidents is not fun. When I saw the surgeon, I learned 2/3 of my rectal muscles were destroyed. Gee, no wonder :shock:

Surgeon sent me and DH to see an Ostomy nurse and that is when I/we learned what a colostomy bag was. I walked away know I wanted one, DH knew I could get my life back with that bag. Today I can go from firm stool to diarrhea in a single BM movement. I know with out that bag I would be tied to the house. Bottom line, I'm in control, not my bowels.

If your husband is having issues dealing with it, he might want to check out this forum, the United Ostomy Association of America. They are a lot like us here.

http://www.ostomy.org/Home.html

I believe there might be support groups, again that forum will help him.

Good luck, I am so sorry he is dealing with this type of problem, for me one of the best decisions I made.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

MissMolly
Posts: 481
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: those of you with a colostomy

Postby MissMolly » Sat Jan 20, 2018 10:46 pm

Betula:
Lee offers a good suggestion in offering the United Ostomy Association of America (UOAA) and its on-line support forum as a positive outreach for your husband to visit. I have a permanent due to a serious intestinal perforation and am a regular poster on the UOAA.

http://www.ostomy.org

There are 3-4 gentlemen on the UOAA forum who have gone through treatment for low rectal cancer, including an APR and permanent colostomy. One regular poster, by the name of “OTdave,” might be a valuable person for your husband to “meet.” OTdave is a 38 ear old gentleman who is now 6 years post treatment for rectal cancer with a permanent colostomy. His posts speak to how his ostomy was a means to his survival that in no way has limited him. Dave is an outdoorsman and enjoys rugged tent camping and kayaking; he is an active leader to his son’s Boy Scout troop; he works as a pediatric occupational therapist.

People young and old have ostomies. Chron’s, ulcerative colitis, diverticulosis, pelvic floor dysfunction, trauma to the pelvis (automobile accidents, gun shot wounds), genetic defects - these are a few underlying health issues that can necessitate an ostomy.

The UOAA support forum was a life-Line to me during the first several months with my ileostomy. I am forever indedded to the wise and caring members of the UOAA support forum.

The UOAA web site offers ready resources for individuals with ostomies. It also publishes a quarterly magazine, “The Phonenix,” which is chocka-block full of information relative to ostomies and living one’s best life with a stoma and intestinal diversion.

Encourage your husband to visit the UOAA web site. The UOAA support forum can offer your husband both understanding and validation of the many raw emotions that he may be experiencing as well as showing him new perspectives and ways to feel whole once again.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Soccermom2boys
Posts: 160
Joined: Tue Nov 10, 2015 10:29 pm

Re: those of you with a colostomy

Postby Soccermom2boys » Sun Jan 21, 2018 2:24 am

betula wrote:I know everyone goes through these stages at their own pace but just wondering how long until you really came to terms with this life change. At this time he is doing well healthwise in terms of the cancer but this colostomy is taking its toll on him now.


Hi Betula—I am two years out from my surgery and still coming to terms with having a permanent colostomy. It’s not as though I haven’t accepted it and realize that it’s permanent, but it is an absolute lifestyle change. I had 45+ years with a rectum that was functioning properly, I had to have a permanent colostomy because my rectal tumor was butting up against the anal sphincter and for clear margins the rectum had to go along with the anal sphincters. So I had a few months from the start of radiation to the time I had the surgery to digest this change, but it is still a completely different experience to deal with and so it will take time for him to eventually see that it’s not the end of the world, just a different experience. He’ll see with time that it’s not going to hold him back from all of the things he did before, but he may need to modify some things and sure, there may be days where it makes you feel miserable because of a bag issue or something, but by and large life goes on as it did before. My advice is to just give it a fair amount of time, it is a big adjustment mentally and physically combined with the fact he was dealing with cancer, that’s a lot to take on and expect it to all fit back to normal without going through the proper stages of acceptance, but he’ll get there.

I agree with Lee and Miss Molly—the UOAA forum is a great resource for living with an ostomy. I check in on there frequently myself, always good tips and positive members helping each other out and sharing techniques, etc. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

betula
Posts: 4
Joined: Sun Jun 11, 2017 10:38 am

Re: those of you with a colostomy

Postby betula » Sun Jan 21, 2018 9:29 am

Thank you all! He was told prior to surgery that he would likely have a permanent colostomy but of course we held out hope that he would not have one.

I do go to united ostomy site also and think I have seen OT Dave. I have found the local support group but due to his work schedule and their only being only once per month meeting we have not been able to make any.

My husband does still get out and do the things he loves, being outdoors, hunting, etc. He feels more comfortable there and his confidence about being around people has been knocked down due to the unpredictable noises from his stoma :oops:

Thank you for letting me vent and share my concerns. You all have been wonderful!

Betsy

[Ana & Alex]
Posts: 92
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: those of you with a colostomy

Postby [Ana & Alex] » Sun Jan 21, 2018 1:09 pm

Dear betula,

I am a 30 year old who had rectal cancer last year and chose to have a permanent colostomy.

There are good days and bad days for everything in life.
But I must say since I started irrigating I feel very good about my self and about my body image.

I have a job where I have lots a meetings in close rooms with lots of different people - and this was a source of anxiety for me as well in the beginning.. and eat around people was always a challenge as well :P

But since I irrigate my stoma rarely makes a sound, I don't wear any pouches.. only a stoma cap and i can Wear ans eat whatever and wherever I want :D

Maybe this would be an option for your husband?

It is not an easy road.. but it is better than living in the Toilett and time will help with the acceptance...

All the best of luck..

Love,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

Lee
Posts: 5505
Joined: Sun Apr 16, 2006 4:09 pm

Re: those of you with a colostomy

Postby Lee » Sun Jan 21, 2018 3:49 pm

betula wrote:. . . He feels more comfortable there and his confidence about being around people has been knocked down due to the unpredictable noises from his stoma :oops:

Betsy


Sometimes that can be controlled with diet. Mine generally does not make that much noise. Once it was very active, the person who heard it just assumed I needed to put food in my stomach. The bag is NOT something most people assume unless you tell them.

I am very open about talking about mine. All my friends know I have one, even their kids know about it. If I'm out with new people and it does make noise, I just tell them I am a cancer survivor and I have a colostomy bag. People are okay with it. There are LOTS of people out there that have this bag for many different reasons. I have a friend who may be getting one soon due to diverticulosis. She was having on going issues with it. Her doctor brought up the subject of a colostomy as a possible solution and to think about it. She shot back, I'm already there, okay with it, thanks to a friend of mine. ME :D

Once I was seeing a doctor for the first time, one of those 45 min get your history type of appt. He was asking about my bag at the end of appt, I told him since I've been in his office, I've had 3 BM. If I did not have this bag, that is 3 times I would have had to leave to use the bathroom or live with an BM accident. He about dropped his jaw. Told him the battle ground is not with the bag, the battle ground is beating the cancer.

I hope your husband can get to a support group soon. We all have battle scars, some are just more visible than others.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Lee
Posts: 5505
Joined: Sun Apr 16, 2006 4:09 pm

Re: those of you with a colostomy

Postby Lee » Sun Jan 21, 2018 6:54 pm

[Ana & Alex] wrote:I have a job where I have lots a meetings in close rooms with lots of different people - and this was a source of anxiety for me as well in the beginning.. and eat around people was always a challenge as well :P

But since I irrigate my stoma rarely makes a sound, I don't wear any pouches.. only a stoma cap and i can Wear ans eat whatever and wherever I want :D

Maybe this would be an option for your husband?

Love,
Ana


That might be a very good option. Maybe something to look into.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Aqx99
Posts: 383
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: those of you with a colostomy

Postby Aqx99 » Mon Jan 22, 2018 5:32 am

You might want to find out if an oncology counselor is available for him to speak to. I've been seeing the one at my cancer center for several months and she has helped me immensely.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

Re: those of you with a colostomy

Postby James65 » Mon Jan 22, 2018 8:35 am

Hi,
I had a full APR in 2006 and with that a colostomy. There was a lot to get used to and it took a while. In some ways I'm still working through some things, but the two things I did that made a difference were irrigating and being physically active, which is mostly trail running, but could be any activity. The irrigation smoothed some of the rough edges of the colostomy and exercise helped physically and emotionally. It keeps me grounded and unwound. It also helped me be more like the person I was before the stoma. I can still have a full life.

Best,
James
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

User avatar
CaliforniaBagMan
Posts: 328
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: those of you with a colostomy

Postby CaliforniaBagMan » Mon Jan 22, 2018 10:05 pm

I didn't see a description of what kind of work he does. For most jobs, I believe you can work around any colostomy issues, except for unexpected and unwanted "noise."

I do irrigation, which helps cut down on "noise," but it doesn't stop it. If your husband does sales presentations to groups, or sits in meetings that are fairly quiet, I completely understand his concern.

My first suggestion is to try irrigation, if he has not done so already. Irrigation plus a reasonable diet and some exercise can work wonders. If I am eating "right" and get some good exercise there is virtually no output nor noise between irrigation sessions that are spaced 24 hours apart. If I am eating more than I should, or having that extra glass of wine with dinner, then that changes things.

When I really, really need to have a guaranteed noise-free time, I do two irrigations. One in the morning, which is my routine. And then one additional one, timed before the important event where I don't want a surprise. Yes, that's extra hassle. But .... the surgery saved my life, giving me the opportunity to confront such hassles. It's not a perfect solution but it's as close as I have figured out so far.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

User avatar
peanut_8
Posts: 2211
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: those of you with a colostomy

Postby peanut_8 » Tue Jan 23, 2018 10:54 am

Hi Betsy,
Sorry about your DH's colostomy. I have a permanent colostomy also. As far as I recall, it took several months to come to terms with it. In my case, reading about others on the Colon Club help[ed a lot. Lots of folks here have it far worse than I do.

As I was getting used to 'Totoro', (my quite large stoma, who my surgeon refers to it as a work of art), small things would make a large difference to my situation. One day I realized I could tuck the bottom of the bag into itself. I was delighted, no more worrying about it hanging below my shirt. The day Coloplast released the Sensor Mia bag, I was almost giddy with delight. No more issues witht the bag ballooning with gas.

At this point, is your DH's main issue with noise emanating from the stoma? If so, there are products that help. Try googling colostomy muffler.

Here's one called the Stoma Stifler...http://www.stomastifler.com/stoma-noise-suppression.php. Created by a mechanical engineer...
The Advantages of the Stoma Stifler for Colostomy and Ileostomy Sound Control
"Avoid embarrassing moments from stoma sounds.Special geometry: The tapered edge along the perimeter provides gentle flex, and contours to individual body shapes. Around the cup and along its spine, the Stoma Stifler has a thicker cross-section to withstand impact and suppress stoma noise.The Stoma Stifler weighs less than a Smartphone, and you do not have to wear it all the time if you choose not to due to the magnetic clasp, which allows the user to put it on and take it off within seconds, easily, without undressing."

Another, https://www.stomabags.com/stealth-belt- ... 1-per-each. Stealth Belt - Muffler-Neoprene Insert To Muffle Stoma Noise. One of our former members, KT, used to wear a stealth belt, and was an active rock climber. I recall he often recommended the product.

Hopefully, there are products available to help with the noise problem. I think trial and error can be of assistance. Also, as others have recommended the people over at the united stony site are rally helpful.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

betula
Posts: 4
Joined: Sun Jun 11, 2017 10:38 am

Re: those of you with a colostomy

Postby betula » Sat Feb 03, 2018 9:02 am

Thank you all!

He has started taking a probiotic which has seemed to help with the noise. He is going to be scheduling an appointment for counseling and we hope to make to colostomy support group this month. He has looked into irrigating but does not feel it would be doable due to the time it takes but maybe down the road he will. I will look into the colostomy muffler and I also got him some Under Armour type shirts that fit tight to wear under shirts that sort of keep things close.

As always, thank you all for the kind support as we all go through this journey!

Betsy

AppleTree
Posts: 164
Joined: Fri Mar 18, 2016 8:16 am

Re: those of you with a colostomy

Postby AppleTree » Sat Feb 03, 2018 12:29 pm

My surgeons viewed my surgery as a success...I have no more rectum...but they had to cut into the sphincter muscles to get the margins. I have had a lot of diarrhea issues. I always carry extra clothes with me. This summer we were at a nice town, planning to take a schooner ride and the runs started...right down my legs and into my shoes. Needless to say, no schooner ride. Now, I am on Folfox and the issues are worse. Doctors are trying to control it with a Sandostatin shot every month (the shot site remains sore and has a lump on my butt for the whole month...we alternate sides) and 6-8 Lomotol pills a day. Even all that does not always help. I never leave home without wearing depends and extra clothing. Most days I do not need these items, but I just know the day I do not have them, I will need them! Also, I eat smaller portions and tend to avoid restaurants. But, to my surgeons, this was a success.

I told my GI DR last week that if things do not improve within 1 year of stopping chemo (maybe even less), I will go to Boston and get the bag.

I understand most people get their chemo with a stoma, but that was not an option for me. I had a lot of complications after my 1st surgery that resulted in the stoma reversal after just a few weeks. Then liver failure so I completely missed the window for chemo the 1st time around. 1 year later...a lung VAT surgery, port and Folfox. So, maybe it is a bit harder for me and that is why I am waiting to give it a little time after chemo.

But, I have a 14 year old and a life to live. I can not let bathroom issues be the thing holding me back, especially after going through everything else to best the cancer!

I hope, maybe in some small way my story will help your husband feel better. Hugs
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

hawkowl
Posts: 79
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: those of you with a colostomy

Postby hawkowl » Sat Feb 03, 2018 9:26 pm

As others have said...it just takes a little time. I have been a permanent ostomate for 2 1/2 years and made a deliberate decision early on to never be ashamed of my ostomy, and to never let it limit me. Over time I have learned how to adjust my diet when I want a silent stoma, amd what appliances work the best for me (currently using a moldable convatec natura barrier and usually only need to change every 7-9 days.

I am disabled due to my neuropathy, but have traveled all over the world as an ostomate (including remote parts of Asia and Africa). I also frequently speak or sing in public. I do feel more secure when I wear a nu hope support belt and an ostomy secrets wrap, and I am careful about what I eat and drink when I will be traveling or out and about.

There are some great ostomy support groups on Facebook including a few (ostomy lifestyle athletes and no limits ostomy) that are more about stoma pride than stoma support...your husband will be amazed and inspired by these people!
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia


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



Who is online

Users browsing this forum: No registered users and 42 guests