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Postby Dan.nah62301 » Sat Oct 20, 2018 8:40 pm

I'm currently in remission (Stage lllC) Thanks to a doctor that ignored the red flags I have colostomy for the rest of my days, this has effected every aspect of my life, before treatments, and surgery I was fun loving, outgoing, adventure seeker, etc etc, now just to leave my home I must take anxiety medication and have them with me. Sorry this has turned into a rant, Guess I'm just looking for suggestions, advise, and or if anyone else has been suffering with this

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Re: Isolation

Postby CRguy » Sat Oct 20, 2018 9:39 pm

Hey Dan welcome to the forum
bit of tough love for you, from a guy who has been here since 2008 with Stage IVa

1. you are alive
2. you have a stoma
3. you are a " ... fun loving, outgoing, adventure seeker, etc etc, "
4. you are HERE ! yup you found us !
5. you are in remission Stage IIIc

here comes the tough love part :
suffering with this ????
Yes had one and had it reversed.
IF it meant NOT being alive now ... I would have kept it ... = WORD !

Do you have any notion of how many friends we have lost here since 2008 who would LOVE to be here with a stoma now ?
... please re-read the 5 points above and if there is really something that does not resonate with YOUR SURVIVAL
of cancer, .... please let me know.

you are here
you ARE a survivor
you found US

some of the most awesome survivors I know have stomas
I have played ball with some of them
they have won Firefighter Games with stomas
they have SURVIVED cancer with stomas
some folks here who had MAJOR issues with post-op recoveries CHOSE to actually GET a stoma TO SURVIVE

If you are here to complain about a stoma ..... ?
We have folks here who THRIVE and are ALIVE because of their stomas
.. Just sayin' buddy
you are new here and you will get the gist of who we are

we gotchur back
AND in return you will give something back !

Oh and about the isolation thing buddy
on THIS forum you are NOT alone, ever

Cheers and Harmony
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: Isolation

Postby jortego128 » Sat Oct 20, 2018 10:17 pm

^ Great points CRguy.

It is tough but you are right!! Many here and that have been here would take that!!

Keep your head up Dan!!
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

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Re: Isolation

Postby peanut_8 » Sun Oct 21, 2018 8:35 am

Hi Dan,
Welcome to Colon Talk.

I have a stoma also, and have made adjustments along the way to manage the situation pretty well.
There are numerous products available to make stoma living tolerable. Most of the time now, I forget that I even have it.

Is there any particular issue that you're having that you'd like advice for? Lots of folks with them here, and I would bet someone could offer assistance.

Best Wishes,
female, diagnosed Jan 14, RC stage 2a, age 56
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Re: Isolation

Postby stu » Sun Oct 21, 2018 9:41 am

Hi ,
I came here years and years ago for my mum . So not a patient but I can see how a person can be left traumatised by the process . You want to get back out there but your mental health is holding you back .
I think you could maybe benefit from learning how others are coping and living life but I also think there is great benefit from acknowledging just how you feel and getting help to assist you over this hurdle . Long term having listened and watched here I believe this is achievable for you but take all the help you can get .
Wishing you brighter days ahead .
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Re: Isolation

Postby mypinkheaven » Sun Oct 21, 2018 11:26 am

I can understand that having the stoma is a big change in your life. I've never had a colostomy or ileostomy. What I do have is almost constant daily abdominal pain from the scar tissue from 4 abdominal surgeries. I would welcome a colostomy if it would stop the pain. The pain has isolated me. I hope this will give you just a bit of a different perspective. I wish you well. 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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Re: Isolation

Postby hawkowl » Sun Oct 21, 2018 1:20 pm

I have had a permanent colostomy for 3 years (my choice, as I didn’t want to do watch and wait or deal with LARS). There is definitely an adjustment period, but I really don’t think about it much anymore. I still travel (all over the world, including remote places in Africa, South America, and India), speak and sing in public, swim, exercise...much more than I ever did before my surgery actually. I am disabled for other reasons, but my ostomy doesn’t limit me at all (other than a few dietary restrictions, more for convenience). And with a colostomy, you have the option of irrigation...and being output and bag free for 24-48 hours.

I hope things get better for you. I will be happy to answer any questions
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
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, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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Re: Isolation

Postby Lee » Sun Oct 21, 2018 1:26 pm

Hi Dan and welcome,

So sorry for what you are going through. I too have a permanent colostomy, butt for me, it gave me my life back. My question to you, did you have a choice or did you wake up from surgery and learn of it? Sometimes that can impact how you feel about a colostomy. How long have you had it?

Due to radiation damage, 2/3 of my rectal muscles were gone anytime I ate, thus I was tied to the toilet for HOURS. Only solution was to not eat anything until I was home for the day, some days that was was 3 or 4 in the afternoon. No real way to live butt I would have taken it if I had too. I had 2 young children I had to raise (9 & 11 at diagnoses)

My surgeon made me and my husband see an Ostomy nurse prior to my surgery, and that is when we learned what a colostomy was. I walked out of that meeting knowing I wanted one. My husband supported me in this decision.

Yes there is a learning curve, butt today, I really can't say it holds me back. I can be out all day, I just make sure I have supplies with me. If you hang around here long enough and read other people challenges with reversals especially when it is rectal cancer, you will learn there are days they have to stay at home or near a toilet or avoid certain foods all together. Thanks to my bag, I can eat what I want, and not have to worry where the nearest toilet it or if certain foods will bother me. Bottom line, I'm in control, not my bowels.

Most of my friends know I have one, I figure it an opportunity to teach people about colon cancer. A few of my friends have been scoped, thanks to me and yes polyps were found. I have one friend who has diverticulosis, been hospitalized many times due to it. Thanks to me, she's okay with getting a colostomy bag the next time it acts up.

There is another forum you might also want to check out. UOAA United Ostomy Association of America ... 0ef660f3f0

As Peanut asked, is there a certain issue you are having with your colostomy bag, maybe something we can help with. I hope in time you can come to terms with your colostomy bag.

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 - 16 years and counting!

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Location: near DC

Re: Isolation

Postby mhf1986 » Sun Oct 21, 2018 1:32 pm

DH has had his stoma now for 2 years. It's not fun some days, especially with the irinotican. However, he goes to work every day on the subway, taking extra pouches. We've been to Europe, Disney, and NYC. It takes planning, yes.

Can you make a list of what you need to go out comfortably? What is the worst thing that could happen and how do you plan for that? DH takes a full set to be able to replace everything (has used it) in a small bag in his briefcase. There's a set at the office, another in the car, and another in my purse. He seeks out family restrooms or handicap stalls because they are bigger. Throw a set of extra clothes (sweatpants, etc) in the car and just drive around a bit to start.

DH has never been a social person and this didn't help. But he has done it and you can too.

Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

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Re: Isolation

Postby MissMolly » Sun Oct 21, 2018 5:02 pm

I can empathize with the feelings that you express. You feel blindsided by the piece of intestine that is sharing space on your abdomen. That your colostomy was not a choice that you had a say in electing can make the emotional adjustment different than those who saw a stoma on the horizon, say due to Chron’s ulcerative colitis.

My personal opinion is that psychologically adjusting and adapting to an ostomy takes a longer time frame than the physical healing of the surgical incision that was part of its creation. Give yourself the gift to time to process what you have been through. Reach out to others, as you are, that are walking/have walked a similar pathway.

I have a permanent ileostomy due to a medication error where I was prescribed an unprecedentedly High dose of prednisolone. Neither the pharmacist nor my physician caught the concentration ratio of prednisolone prescribed. Tissue thinning caused my intestine to unzip, a grave situation. An ileostomy was not something I planned.

Adjusting and adapting to an ostomy takes time. Researching available ostomy pouching products and finding the optimal system for you is key to finding acceptance and comfort. There are oodles and oodles of pouching options. Single-use, closed ended pouches are an option for those with a colostomy. No draining of fecal matter requires. Simply take off the pouch after a bowel movement, place in a plastic bag and toss into the trash. Replace with a fresh pouch. And be on your way.

The pouching system first provided in the hospital is usually a generic/simple set-up. It is well worth calling the major ostomy manufacturers and talking to their customer service staff. They will provide you with an array of samples based on your skin characteristics and abdominal topography as well as qualities important to you. Coloplast, Hollister, and ConVaTech are the three major manufacturers. Each manufacturer has unique aspects to their ostomy products. Take time to find the right system for you. The UOAA web site has contact information for each of the ostomy manufacturers. You will barely notice your stoma with a well-fitting ostomy system.

If you are concerned about wafer failures and leaking poop, adaptic seals are available. Adaptic seals are a ring of flexible hudrocolloid material that is placed circling the stoma. It acts like an O-ring or washer in a faucet or garden hose. Adaptic seals are known as: a. Cohesive Seals by ConVaTech; b. Adapt Rings by Hollister; Brava Rings by Coloplast.

There are also external strips and seals that can be used to anchor the edges of an ostomy wafer to the skin, securing the seal. Example: Sure-Seals by Safe N’ Simple; Brava cohesive strips by Coloplast.

The United Ostomy Association has a support forum similar to this forum. You will be among friends at the UOAA forum. Everything you need to know about stoma care can probably be addressed by the cadre of its members. No question to small nor too big.

An ostomy wafer adheres to the skin via a chemical reaction mediated by the body’s warmth/heat with the hydrocolloid and pectin composite that is the wafer. The seal is air and water-tight. There is no detectable odor with an intact seal.

I am a tiny/petite person. 5’2” and 80 pounds. You would not know that I wear an ostomy pouch from looking at me. My ostomy is well-behaved. I wear the Coloplast Mio line of ostomy pouches/wafers - a low profile, flexible option. Caring for my ostomy has become as routine as brushing my teeth.

There is a good quality of life to be found with an ostomy. Find support and commaraderie in connecting with others with an ostomy. People helping people.

United Ostomy Association of America:

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.

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Maggie Nell
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Re: Isolation

Postby Maggie Nell » Sun Oct 21, 2018 9:59 pm

Dan.nah62301 wrote:I'm currently in remission (Stage lllC) Thanks to a doctor that ignored the red flags I have colostomy for the rest of my days, this has effected every aspect of my life, before treatments, and surgery I was fun loving, outgoing, adventure seeker, etc etc, now just to leave my home I must take anxiety medication and have them with me. Sorry this has turned into a rant, Guess I'm just looking for suggestions, advise, and or if anyone else has been suffering with this

G'day Dana,

Life-crippling anxiety is a particularly nasty monkey to have on your back. It is common for folks to develop a ptsd after the trauma of
surgery and the devastating diagnosis. Does your head in and then there's a whole new body - resistance is futile - to quote the Borg. If
you're not a Trekkie that reference will go straight over your head, yeah? 8)

Sounds like you've become a 'shut-in' and you're rocking agoraphobia. The good news is that there are heaps of effective strategies for
this extreme anxiety; whether or not you have access to psychoncologists in your region is another matter. You may be able to organise
Skype sessions.

You don't say how far behind you the treatments and surgery are or how long you have been bedevilled with the anxiety - weeks, months or
years. Personally, I'd like to take a swig of Jack for the anxiety but alcohol just puts a bandaid on things. You need to dig down and root
out the cause and recover the confidence in your ability to roll. You'll get it back.

Learning how to control your breathing, to manage the 'what if' negative thoughts, and being gentle in giving care to your weird-scared-little-animal-body,
is key to dialling back the anxiety and reclaiming a sense of ease and peace of mind.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX

Sorbitol is the Devil
Ordained Dudeist Priest at Dudeism, the Church of the Latter-Day Dude 8)

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Re: Isolation

Postby teachpdx » Mon Oct 22, 2018 12:10 am

Hi Dan. This is a difficult journey and not for the faint of heart. Making peace with your situation can be very helpful... if you hang onto anger it's pretty difficult to move forward.

We all need to mourn the person we were before and figuring out who our new us is a process that takes time.

Be kind to yourself and enlist the help of friends/family to help you get out.

Baby steps.

4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Isolation

Postby AppleTree » Mon Oct 22, 2018 2:46 am

Well, I am a member with no stoma, but will not rule one out in the future. My surgeons removed part of my sphincter muscles to get clear margins. I went through the reattachment bathroom issues. A year later...reoccurrence so chemo...with no bag. Fecal incontinence is a big issue of mine. When the poo wants comes with about 5 seconds notice. If I am not right next to a bathroom, it involves a big cleanup. I never leave home without extra depends, wet wipes, a spare pair of pants, even socks because I have had it run down into my shoes...just as my sister and I were going to take a schooner ride. Talk about disappointment! I also do not wear skirts, dresses or anything light colored anymore.

I try to eat small snacks all day and then an early dinner so the onset of my runs hopefully happens before I go to sleep. This does not always work. Case in point, it is 3:23 am and I am awake because just in the short time I am trying to send you a message, I have run to the bathroom 4x. It generally makes an unmistakable noise and smells.

But really, the worst thing is my 15 year old son's fear of me applying for a job. Because I am 5'8" and down to 105 (a few weeks ago I weighed 103, so 105 is an improvement), he is convinced a job will do me in. I go to physical rehab 2x a week. By 9pm my head is often too heavy to hold up and I gratefully lay in bed, propped up on pillows and read, journal or knit. Or sleep.

To help with my diarrhea, I follow a diet, get a Sandostatin shot every month(very painful for about a week) and take 6-8 Lomotol a day. I have been tested for all sorts of bacteria, but really there is nothing wrong with me. 1 take 1 oxycodone at night for ongoing radiation pain so I can get comfortable and go to sleep (which helps against diarreah too)...during the day I will take a Tylenol if needed.

I have good days and not so good days. I still do alot of things, but no more stuff like camping or swimming in public pools. I feel with a bag I would not be so limited. has not been 6 months since my chemo ended (almost though!). My oncologist wants me to give it at least 8 months before further discussion. Last weeks lab showed my white blood cell counts and platelets still climbing, so she still considers me recovering. My PET was clear!

I do not know if any of this has helped you. Can you imagine, someone envious that you have a bag? As others have suggested, get some samples of other systems and give them a try. There may be a better system for you. And try not to let this keep you home. It IS OK. You are here. You are a survivor.

You have landed with a good group of people. We hear you. We are here. You will find people here are understanding and offer a great amount of support and helpful advice and encouragement. Start doing little things and report back on how it is going. One thing that has helped me stay positive is journaling and ending each day with something I am thankful for.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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Re: Isolation

Postby GrouseMan » Tue Oct 23, 2018 10:20 am

Ya - the stoma isn't the end all you might think. I believe there are plenty of very active outgoing members that have them on the forums. Some still exercise, I might add vigorously, run swim and participate! I believe one was a rock climber another continued his martial arts training....

My wife in the end, developed a blockage from a tumor in her abdomen. So rather than puking things up all the time she tried a stoma, and they assured her that she could still ride her horse and do all the things she was doing only a couple short weeks before. It was something to try to give her a better quality of life at the end. Unfortunately - it wasn't successful despite a great surgeon. She had multiple blockages, and still puked up green bile. So they suggested an ng tube but that would have made it difficult to ride and work with her dogs. So she tried a gastric tube. Unfortunately she wasn't absorbing much nutrition or water passing into her lower digestion track, and passed away a couple of weeks later. But she never gave up, fighting all the way to do the things she loved to do. So your situation is better than some.

There are people here that can probably help you deal with your stoma. There are forums specifically for people that have them from what I understand. But just know. Although it is life changing as CRGuy says - you are alive - the hell with what anyone else thinks about you having one. Make jokes about it. We once had a member here that was trying to figure out how to make it less noticeable so she could still get it on with her husband. As I recall there were plenty of suggestions from other members. Be positive about what his means. You are ALIVE and can be with your loved ones.

Good luck on your journey.

DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Posts: 2507
Joined: Fri Jul 21, 2017 3:43 am

Re: Isolation

Postby NHMike » Tue Oct 23, 2018 12:02 pm

I lived with a Stoma for 9 months. There were positives and negatives but I did get used to it. Life became quite difficult after it was reversed and my surgeon said that it could take a year to get back to normal. There are lots of people that never get back to normal. A permanent colostomy is an option if the reversal doesn't work out. So things can be tough either way. I have medications to help control things - Imodium to slow things down and Slippery Elm to speed things up.

I was prepared to live with an Ileostomy if I had to - same with a Colostomy. My surgeon told me that she would make the choice on temporary ileostomy or a permanent colostomy during surgery. So I had to prepare myself for either outcome. There were activities that I could do, including running, with the ileostomy and I think that you could run and do a lot of things with a colostomy as well. I went to work normally with an ileostomy though I had to wear clothes to hide it.

There are forums dedicated to ileostomy and colostomy living and you'll see that people live fairly close to normal lives. Talking to other people shouldn't be a limitation with a bag.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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