Give a 45 year old Ostomy advice...

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Give a 45 year old Ostomy advice...

Postby scaredwidowedmom » Fri Dec 28, 2012 4:44 pm

I'm scheduled for surgery 2/14/13 at which time they are hoping to be able to do an illeostomy rather than a colostomy. Either one is freaking me out. I mean seriously, I can't even look at ostomy supplies without going into a full fledged panic attack and start crying. I'm having such a hard time coming to grips with this part of the treatment. Chemorad? ok... surgery? ok... more chemo after that? ok.... but The Bag!? no no no no no no no. I keep reading on here were people who are staged higher than me that were able to get reversed but I'm terrified of being the statistic and the one who has a permanent one.

Went for an ostomy consult and they make it sound like it's no big deal, easy peesy.... right.... I'm sorry, part of my frickin intestines are hanging outside my body and I have a bag of poop attached to me! It's a really big deal for me!

So help me out... relieve my fears... tell me the horror stories.... tell me the funny stories.... tell me the limitations.... the awkward sex with your partner... I gotta know what I'm facing from someone who's been through this.... What are some do's and dont's of this "thing" that I've got to deal with? God I'm gonna cry again. :cry:
Susan Diag @ 45
DX 10/1/12 T3N2M0
Ultra LAR w/ileo 2/13
3/13 18 X- 5fu & oxali
TD 9/2013
Ct clear watching lungs & liver 12/2013
2/14 colonoscopy 2 pre-c
7/14 permanent painful cipn & gastroparesis
Next ct 10/14

justin case
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Re: Give a 45 year old Ostomy advice...

Postby justin case » Fri Dec 28, 2012 5:28 pm

It's going to depend on how much of your sphincter muscles, they can save. Depending on location of your tumor, they try for a clear margin. My lowest tumor started at 6 cm from the anal verge. After surgery I have approximately 4 cm left, that was reconnected to my what was left of my sigmoid colon. I had a temporary illiostomy, and was reversed. Without you sphincters, you cannot hold a normal flow, i.e. you have no control of your bowels.The surgeon will not know how much he can save, until he is able to see how much cancer is there. I'll leave the other questions, to someone more qualified.
7/11 diagnosed Stage 2 colon and rectal cancer
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Re: Give a 45 year old Ostomy advice...

Postby NWgirl » Fri Dec 28, 2012 5:30 pm

I completely understand. When they told me I'd have to have an ileostomy I completely fell apart. I could handle cancer, I couldn't handle a poop bag. So here's what got me through it.

#1 - Find a GOOD ostomy nurse. They're called WOCN (Wound and Ostomy Care Nurse). A GOOD ostomy nurse is worth his/her weight in gold. Mine met with me weekly leading up to my surgery and aside from teaching me the technical aspects of how to change the bag, find a bag that fits, marked me for surgery, etc. - more importantly she helped me emotionally. She let me cry and grieve and fall apart. And she helped me through it.

#2 - Share your fears with your spouse and a few close friends. I felt like I was going to be a freak. A good friend of mine at the time said "Belle, you know what, we're all freaks. I have holes in the side of neck that leak." I know - WTF huh! Anyway - as I shared my fears with my close friends, they reassured me that ostomy or not, they loved and cared about me. I remember one time after I had my ileostomy I met a group of friends for breakfast at a restaurant. As soon as I sat down I felt it - that warm wet feeling of a leak. Oh crap. My bag of supplies was in my car.......a block away. I asked a friend if she'd mind getting it for me. She didn't even blink an eye - just grabbed the keys and headed out the door. When she returned, I took the supplies, which included clean underwear/pants, and went into the bathroom to clean up. It wasn't fun - or easy - or simple - but I did it, washed up, and went out to finish breakfast.

#3 - Remind yourself that temporary or permanent - this is something you have to do to survive. Survive - period.

#4 - Connect with other ostomates. Here's a link to the UOAA board. Wonderful people here living full and productive lives - with ostomy's.

If you are so inclined, here are the links to "The Colostomy Conundrum" - a 3 part series I wrote for The Colon Club blog a few months back. As for me, my reversal didn't work and I opted for a permanent colostomy. Would I prefer to not have an ostomy? Of course! No one WANTS an ostomy. But I've learned to accept mine and after all I've been through - to appreciate it. Yup, I can honestly say I'm GLAD I have an ostomy. But I went through a hell of a lot to get to this point. You CAN adjust to life with an ostomy and life CAN be good with an ostomy - I promise. This past year we took a lot of trips - D.C., Napa Valley, Kansas City, Hawaii, Crater Lake, the Oregon Coast/CA Redwoods and 2 camping trips. All good - all with my ostomy. We took the kids to a weekend at Great Wolf Lodge and I went down EVERY slide there - me and my ostomy. I volunteer in my kids classes once a week. If the ostomy farts - heck, blame it on the kids - I do! :mrgreen: As for leaks, I rarely have them. The incident in the restaurant was the worst and even that wasn't bad. ... rt-1-of-3/ ... um-part-2/ ... 93-part-3/
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

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Re: Give a 45 year old Ostomy advice...

Postby NWgirl » Fri Dec 28, 2012 5:35 pm

Okay - here's a funny story - at least I thought it was. Me, hubby and the kids were flying back from some place or other and I had to empty my bag - it had SO MUCH gas in it! It just couldn't wait till we landed. I should note that it's never a good idea to have a beer at the airport bar before getting on the plane - lesson learned; but I don't think I had a beer this time - my body just decided flying on a plane was a good time to fart a lot.

So I head off to the bathroom thinking how sorry I felt for the people sitting near the bathroom because ostomy farts REALLY stink. I get in there and as soon as I locked the door the light went on AND a super duper heavy fan! Whew! As I emptied the gas out of the bag the fan sucked it away immediately! Yeah for me! And I head back to my seat, about in the center of the aircraft.

I walk to the seat and my husband has a pissed off look on his face. "What's wrong?" I ask - "It's your daughter!" he says - "she's farting!". I looked at my daughter and she says "It's not me!". As I sat down I smelled that oh familiar smell.....oh good lord, that damn fan seems to vent to the back of the airplane - WTF????? Oh well, other than my family, no one could possibly connect me with that smell. But I'd still advise ostomates to avoid beer at the airport before they get on the plane!
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

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Re: Give a 45 year old Ostomy advice...

Postby Lee » Fri Dec 28, 2012 5:44 pm

Hi Susan,

I have an colostomy, it was my decision, and for me it gave me my life back. So my views may be different.

As a result of radiation, I lost all rectal control (2/3 of my rectal muscles were destroyed). If I ate ANYTHING, I had 1 hr, than for the next 3-4 hrs I was tied to the toilet simply because I had no rectal control. Many days I did not get my first meal of the day until 3;00 OR 4:00 in the afternoon when I knew I was home for the day.

As a result of my colostomy, I can eat anything I want and not worry how it will effect me. I can go horse back riding, fly on a plane, play in the ocean or go on all day field trips. I just make sure I have a few bags with me so I can change if I need to. But I have the control, not my bowels.

Personally between dealing with intestines hanging out and dealing with potty accidents, I will take the intestines hanging out any day. While most of my friends know about my colostomy, none are offended by it, if anything they and Dr.s tend to pick my brain and get a better understanding of what a colostomy is. I figure I'm promoting awareness for colon cancer so I will answer any and all questions.

Hope this helps, really at first it's learning something new, but in short time, it's just something you do, like taking a bath, brushing your teeth, etc.

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!

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Re: Give a 45 year old Ostomy advice...

Postby Jachut » Fri Dec 28, 2012 6:01 pm

On a lighter note - bathing suits, lw rise jeans, tight tops, normal clothes. I did all that with a bag. It was invisible. I didn't have to dress like an old grandma.i ran, went to the gym, it really truly was no big deal.

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Re: Give a 45 year old Ostomy advice...

Postby Coppercent » Fri Dec 28, 2012 6:10 pm

I had an ileostomy for 11 months and found it to be pretty normal. It freaked me at first but I had a great nurse and aid in the hospital and they were wonderful. The company I ordered my supplies through we're great as well. They answered all my questions and were only a phone call away if needed. It honestly wasn't that bad. I have changed my bag in public bathrooms a couple of times. I changed mine every few days and it only took a couple of minutes. There are quite a few products that can make it easier. I wore tight jeans and really didn't change a thing while I had it. Good luck. You will be fine.
07/15/11 Stage III Rectal, 08/11 - 09/11 Chemo/rad 11/11 LAR - Whole rectum gone, ostomy, hysterectomy
01/12 Port placed, 01/12 thru 06/12 Folfox, Xelox 10/03/12 Reversal, Clear scan
And then the story continues.
Currently, remission round two!

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Re: Give a 45 year old Ostomy advice...

Postby raym » Fri Dec 28, 2012 6:38 pm

After my second surgery last April I have a permanent colostomy. It was not a given when I went under but a a pretty chance I would have one. I had my original surgery in April 11 with no colostomy but it was difficult as it really changed my bowel habits. And eventually with the cancer recurrence it made a narrow passage so it made going to the bathroom difficult and unpredictable. So on the plus side I don't have to plan my trips around having a bathroom nearby or plan my meals to avoid having to go while away from a bathroom. A number of things I don't like about the bag. Occasional leaks. Have not had an horrendous things in public, mostly at home or in the car on the way home. I think twice at work I had to change the bag in 8 months. Not able to get into the hot tub as often as I would like. The hot tub seems to degrade the adhesive on the bag so I don't go in much to avoid using up my allotted monthly supplies per insurance. Clothing issues. The location of the stoma is not in the best place. Even though we marked it before surgery, I had no street clothes or jeans with me to help with its location. It's just a bit too high. Exercise (biking/running). For me it seems to be just more of a pain but I think it's more mental than physical. For the most part my bowels go inactive when I'm working out. I wear a bag belt to help keep it secure. My biggest issue (and this varies greatly) is that my bowels have always been pretty active. So the bag does ssometimes fill up at inconvenient times, like in a meeting at work.

But all in all, it's part of my routine. I did not have any issues after leaving the hospital with changing the wafer (adhesive part) and bag. I use a two piece drainable bag.

There are of course body image issues to deal with. I wear a lycra band during intimate times, just to keep the bag out the way. It's made for women to extend the top of their pants to keep the moon from showing, lol. I forget the name, but got it at Walmart.
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
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Re: Give a 45 year old Ostomy advice...

Postby debzak » Fri Dec 28, 2012 8:40 pm

I just got my ileostomy on nov 5th and hopefully will have it reversed this summer. I was totally grossed out by it in the hospital and didn't want to empty it myself (even though they made me!). Then the ostomy nurse came to my house. The first time we changed it I thought I was going to faint!. IT was totally ugly and it kept squirting out you know what the entire time!!! The nurse came 2x a week and each time it got a little easier. We also switched products (I now use conva-tec moldable wafers and I like it much better). Each time the nurse came I did a little more of the task myself. I was always worried about putting on in the exact spot, but now I use som adhesive paste,so it covers any spots if I am not "right on".

For me now the hardest part is taking the wafer off each time. I have sensitive skin and it is like ripping off a huge bandaid. I use stoma powder and barrier wipes each time to protect my skin, even if I don't have any "break down".

I will tell you it is still ugly, bright red and just sticking out there.

On a day to day basis, emptying the bag is not much of a big deal. Having said that, I did just have my first oops in a public bathroom (I actually came to the site today to mention it). We went out to dinner and I went to the bathroom after. Well the end of the bag, where you empty it from, slipped from my fingers and you know what started to pour into my pant leg. I don't know what I was "happier" about, the fact that I was wearing black pants, or that I ALWAYS have baby wipes in my bag (along with everything else).

truth be told, with a little change in your mind set,it is managable. I wear "trendy tops" over my bag and it holds it in place (they are those infomercial things they sell to not have your "crack" show when you bend down, my drug store sells them). If it wasn't for the ostomy, I wouldn't be here, so I have accept it, temporarily for now and hopefully not to return in the future.

Just take it one day at a time...

2/27/12 dx rectal cancer (stage III)
3/6/12 44th B-day
3/19/12 Oxi & 5-FU (8 rounds)
7/9/12 chemo-rad
11/5/12 LAR surgery temp ileo
1/20/13 4 rounds Xeloda
5/13 multiple liver mets
6/4/13 HAI pump at Sloan
KRAS wild & BRAF mutation found :(

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Re: Give a 45 year old Ostomy advice...

Postby Surroundedbylove » Fri Dec 28, 2012 10:33 pm

Feel free to check out many of my posts - there are thousands.....

Bottomline - it is tougher on cancer patients to come to grips with emotionally but it is not a difficult thing. In fact, I found it easier to deal with in many respects than the urgency and frequency during radiation treatment.

Swimming, snorkeling in Hawaii, hiking, camping, other exercise - all easy. Honestly, my husband said I had an easier time when we were hiking/camping/back packing than he did!

The UOAA is a great organization -

I like you was T3N2 - it is doable and it is an important part of the protocol for treatment in many of our cases.

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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Re: Give a 45 year old Ostomy advice...

Postby WorriedWife » Sat Dec 29, 2012 1:27 am

Just wondering - What is the difference between an ostomy, colostomy, and an ileostomy?

Dear scaredwidowedmom,

Obviously I do not know anything about this, but I just wanted to say I will pray for you. I can tell how difficult this is for you :( I am so sorry. I think you received tons of good advice here by some experienced people who are getting along fine with theirs. I wish you a lot of luck with your surgery and I hope you find a good nurse to help you with this.
CC Stg. 2b
Dx 6/12
surgery & reconnect
opted out Folfox
Pet Scan Aug NED
abscess/fistula for over a year
ongoing Dec 2013
Praying for each and every one of you

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Re: Give a 45 year old Ostomy advice...

Postby NWgirl » Sat Dec 29, 2012 3:14 am

There are 3 types of ostomy's that I'm aware of.

Colostomy - uses a piece of the colon/large intestine to create the ostomy. Most people consider a colostomy easier to manage as the output is generally thicker (less liquid) than an ileostomy. This is simply because one of the purposes of the colon is to absorb water from the food as it passes through.

Ileostomy - uses a piece of small intestine to create the ostomy. These are generally what is done when it is thought to be temporary - for example folks here who have surgery to remove the cancerous tumor; and after the surgical area has healed sufficiently; can be reconnected. That said, plenty of people have permanent ileostomy's. Anyone who has had their colon removed, for example, would end up with an ileostomy (although some people who have just their small intestine and their rectum can be reconnected). I believe that sometimes folks with Crohn's or Ulcerative Colitis end up with ileostomy's. I have a friend whose colon ruptured and she now has a permanent ileostomy. Ileostomy's tend to have a more liquid output as the food doesn't pass through the colon any longer. People with ileostomy's have to be more careful about proper hydration and sometimes have to watch the foods they eat - i.e. be careful of high fiber foods. I had my ileo for a year and for the most part had a normal diet. But I know some folks have to be more careful.

Urostomy - we don't read much about them on this board; but some folks have these. I'm not too familiar with why these are necessitated (medically speaking); but they are for urine. So for some medical reason, a person cannot urinate normally.

An ostomy can refer to any one of these types of ostomy. There may be other types, but these are the only ones I've heard of.
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

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Re: Give a 45 year old Ostomy advice...

Postby GreenLakeGirl » Sat Dec 29, 2012 3:16 am

WorriedWife wrote:Just wondering - What is the difference between an ostomy, colostomy, and an ileostomy?

An ostomy is any surgical opening from the abdominal wall to allow waste (fecal or urine) to leave the body. The prefix tells you where the ostomy is located: Colostomy is made in the wall of the colon (so the patient still has some colon left to absorb water from their waste); Ileostomy is made when the colon is removed or bypassed and is an opening from the ileum, a portion of the small intestine; Urostomy is another form of ostomy formed from the urinary tract.

I had mine for just under a year, and while I struggled for much of that time with skin that didn't like adhesives, I found it was great to have an ostomy while going through chemo. I had a lot of diarrhea during treatment, and my pouch made it much easier to avoid multiple trips to the bathroom. I didn't like wearing jeans over my pouch, so low-rise jeans were actually great for me! The waistband could be under the appliance. I covered the bag with a pregnancy band that was really just a decorative band of stretchy fabric that would hide the bag, similar to what others have mentioned. (Bellaband was the brand I used, but there are several more out there now. I got mine at Target.) I tended to wear my shirts untucked or go with looks where I didn't have a shirt that needed to be tucked in (sweaters, etc).

None of my friends knew about my ostomy unless I chose to tell them. I was grateful for it, and I struggled with it as well, so don't feel that you need to have an all-or-nothing feeling about it. There is a learning curve involved, and it may take some time to figure out which products work best with your body. Also, the WOCN needs to focus on making you feel comfortable with an ostomy, so if they are too rah-rah for you, ask them to dial it back!
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

Deb in Texas
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Re: Give a 45 year old Ostomy advice...

Postby Deb in Texas » Sat Dec 29, 2012 5:39 am

Susan, your diagnosis and treatment sounds very similar to mine (see on at the top of the Colon and Rectal Cancer forum titled "Deb's Rectal Cancer Story and Chemo Log"). Like you, I felt I could handle everything but the bag and that's the only thing I cried about. Surprisingly, I found the strength to handle it and you will too. Also check out the UOAA discussion board for tips and advice on ostomies.
Good luck to you.
Deb, f50
Dx 49 on 5-4-12 RCa
5.5 weeks of Xeloda+rad 5-12 to 7-12
Lovely month of normalcy in August!
LAR + temp ileo 9-5-12
Stage IIIa, T2,N1
FOLFOX6 10-16-12 x 12 rounds for 6 mos
Round 12 completed
Ileo reversal following chemo 2013

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