My HONEST TO GOD experience with a colostomy or ...

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Terry
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My HONEST TO GOD experience with a colostomy or ...

Postby Terry » Wed Mar 14, 2012 9:56 pm

This is my honest to God experience with a colostomy or bag or whatever you want to call it. I had an APR January 16, 2012. I was nervous and not exactly thrilled but thought O.K. if it gets rid of the cancer I can live with this.

The first week in the hospital they do most of it and they have you help while they watch. Then you go home and you're on your own. First thing I had trouble with was "pancaking", that's when the poop adheres to the stoma and skin and builds out from there and smells. Ahh, then I remembered the ostomy nurse telling me to spray the inside of my bag with PAM for cooking. It makes the poo fall down into the bottom of the bag and you get less sore. 2nd, don't use baby wipes they cause like a prickly heat irritation. I use t.p. with warm water to wash it off and then lay a clean wash cloth over it for a few minutes. Now that my incision is 95% closed I live it packed and take everything off the stomach and just take a normal shower. No problems with skin breakdown sense. Do get the lubricating odor stuff that adapt makes it does help. I was told to use vanilla extract and in a pinch it does help for a very short time. Of course my problem was I had a little of the adhesive coming up and a little poo sticking out so nothing to help that but a new flange. Luckily with a colostomy it's usually thick enough that a small amount of leak doesn't do much. I had the thing fill up one night with a little looser than usual and was full of shieet from hip to arm pit and it was gross! I think it was the bloody Mary (virgin) with the pickled asparagus, brussel sprouts, beans and okra that blew the sucker off:)

I hated the thing the first 2 to 3 weeks, then something changed and I figured out that if I had diahrea and nausea I didn't have to worry about running to the bathroom and having it come out of both ends. Also now with chemo I don't have the same worry although I usually get constipated. I live an hour to an hour and a half away from town so this is actually a Godsend. It also makes for a little humor. Herman passes gas loudly and when he chooses and I just say "that wasn't me and just like every other man I have no control over him". and they usually laugh.

I don't mind it any more and it's actually become a convenience. I use the disposables, medicare pays for 2 a day, some days I use 1 over 2 days and other I might use 3 in one day but most I use 2, one in the a.m. and 1 in the p.m. No emptying, bag it up and throw it out. Do use the calk it does help it not to leak under the flange. They have these little flange wipes to get off the extra calk when you change it, I use them but they take longer to dry before putting on the new one. Just place your warm rag on during that time and then dab it dry with a towel. They gave me one that was so hard my husband couldn't get it out of the tube and they exchanged it. It's not cheap and you need to be able to get it out.

So I hope this helps some of you that are going through this to feel better. It is liveable the longer you have it the easier it is to accept.
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!

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Nickmark59
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Location: Pittsburgh Pa.
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Re: My HONEST TO GOD experience with a colostomy or ...

Postby Nickmark59 » Thu Mar 15, 2012 6:59 am

I always had problems with mine staying put and not leaking because of all the bending over I do on the Job. Then I would get the red hot inflamed skin etc. glad you have gotten good results and glad mine was only temp for 1 1/2 years.
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

esk2poo
Posts: 499
Joined: Sat Dec 17, 2011 7:17 am
Location: New Jersey

Re: My HONEST TO GOD experience with a colostomy or ...

Postby esk2poo » Thu Mar 15, 2012 7:12 am

Terry,
I am so gald that I woke up from suregery wtihout one. Mine was in my Cecum. I am amazed at you guys dealing with this and laugh with uou as you get used to it and share your funny stories. What else do you have to laugh at?
Great to see your attitude about it so soon and praying for you and your family.
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: My HONEST TO GOD experience with a colostomy or ...

Postby nicola smith » Thu Mar 15, 2012 9:11 am

probably you know this already but this site is great for help dealing with ostomy issues, and sharing laughs

https://www.ostomy.org/forum/index.php
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

NWgirl
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Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: My HONEST TO GOD experience with a colostomy or ...

Postby NWgirl » Thu Mar 15, 2012 9:33 am

Terry you are doing GREAT!!!!! Keep in mind Smooth Move tea for mild constipation. Miralax for more serious issues.

I recently visited a Naturopath and she has me on various supplements. Nothing fancy - Vit D., Calcium, Magnesium, garlic and some GOOD probiotics. I noticed immediately upon taking the supplements that I have much less gas in my bag. Previously it was common for me to have to "burp" the bag twice a night. If I didn't, I'd wake up with a very FULL Good Year Blimp on my abdomen - and I'd rush to the bathroom to let the gas out before it popped like a balloon and flew all over the room - lol! Anyway, the gas is WAY less and I credit this to the probiotics.

As your stoma heals, it's normal to have more gas than you will otherwise. But keep in mind the probiotics, especially since you're also on chemo (like me). I tried probiotics before and didn't notice any difference, so I guess it's like so many things, you have to keep trying until you find the one that is right for your body.

Again, you are doing super at adjusting to your new ostomy. And the infrequent trips to the bathroom, no more butt burn, no more worrying about diahrrea - all bonus. :mrgreen:
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: My HONEST TO GOD experience with a colostomy or ...

Postby Lee » Thu Mar 15, 2012 11:30 am

Terry,

Congratulations on doing a great with your colostomy. I have one and for me it gave me my life back. I don't worry about what I eat and how it could effect me. I can be out all day and not worry where the nearest toilet is.

I too use the disposable bags, and yep generally 2 day (am & pm) does it for me also. I would be interest to know what flange wipes you use, as the different ones I've tried don't work that well for me. Maybe there is something new out there I'm not aware of.

Take care of yourself.

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 - 16 years and counting!

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Bill5107
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Joined: Sun Jul 11, 2010 5:50 pm

Re: My HONEST TO GOD experience with a colostomy or ...

Postby Bill5107 » Fri Mar 16, 2012 12:51 am

Oh Terry, I'm glad to hear this. I always say folks dealing with ostomies owe it to themselves to join up over at ostomy.org.

About colostomies, I was never really too concerned about mine as by the time I was Dx, it was clear that my old equipment was just about used up and I wouldn't trust it in the future anyway. Not having a choice at all in the matter helped me cope, plus my natural engineering mindset and playful curiosity. I mean, actually seeing your intestines would usually indicate a sever problem of some sort, right? Well, not for us! It's right there to see and marvel at. Amazing really how it all works.

And I love the little personalities we attribute to them. . . as they "sing", and such. I love your take on the farting noises! lol
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!


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