I have an ostomy - and I'm ok.

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I have an ostomy - and I'm ok.

Postby Gaelen » Mon Jan 11, 2010 8:19 am

This weekend a woman with a new ileostomy posted (twice) asking for help and information.
We also had another rash of anti-ostomy posts.
It occurred to me that maybe some of the problem (in both situations) is complete lack of information - since most people have NO IDEA that someone else has an ostomy, it's hard to know who to ask for information, and what to ask them about.

While the support groups and websites are helpful (and we should get them into this thread), what struck me is that the first people who answered the new poster's call for help all started off with variations of 'I don't have an ostomy, but...' Unless you've got the time to sort through all of the signatures on every post, it's pretty hard to find the ostomates and former ostomates who are right here and could answer questions and offer practical tips.

I thought it might make a difference to those with new ostomies (and put a cork in the anti-ostomy posts) to have a reference thread about ostomies that includes both:
1) helpful resources for learning to live with an ostomy
2) a list of people right on this board who have or have had ostomies.
We could each post when we got an ostomy, why (cancer stage), what type, and how long. That way, if someone with questions wanted some help from people who've actually had the procedure, there's be an easy-to-find list of people they could ask, either on the board or via private message (PM).

I'll start: Gaelen, stage IV rectal cancer - permanent colostomy since 2005.

Anyone else care to be part of a solution to make information about ostomies more readily available here?
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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Re: I have an ostomy - and I'm ok.

Postby BrownBagger » Mon Jan 11, 2010 9:35 am

Well, like many rectal cancer patients, I had a temporary loop ileostomy (10 weeks), and I've mentally prepared myself for the possibility that I might wind up with a permanent colomstomy at some point if things don't work out the way I hope and believe they will. I think my 10-week stretch was pretty brief compared to most other people who get one. That was fine by me.

Have you ever had an ileostomy, Gaelen? I'm curious how the two would compare. Just curious.
Last edited by BrownBagger on Mon Jan 11, 2010 4:41 pm, edited 1 time in total.
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Re: I have an ostomy - and I'm ok.

Postby Surroundedbylove » Mon Jan 11, 2010 9:56 am

I had a temporary loop ileostomy due to rectal cancer. Like Brownbagger have gotten my head around the idea that if I ever need a permanent colostomy I will be OK. I was also OK with the temporary ileo. The transition to "OK" came in stages - approximately 2 weeks, then another month, and then at about 4 months I had total acceptance. In fact, I delayed my takedown surgery because I wanted to do some traveling and I was much more secure traveling with the ileo than planning on the unknown with the takedown. The travel involved long overseas flights, hiking, backpacking, swimming, and many other "adventure" type things and I was completely fine with the ileo.

The best resources for me were uoaa.org, my local uoaa ostomy visitor, and my local ostomy nurse.

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
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Re: I have an ostomy - and I'm ok.

Postby James65 » Mon Jan 11, 2010 10:21 am

I have to second your thoughts. I have an ostomy because my cancer was low in the rectum and I wanted the best chance of a cure. I have an ostomy now and while I would rather have my life of before, I am still a person and doing all that I have always done. It's a hard thing to quantify or explain in terms of quality of life because I don't want to have an ostomy, but I do, but I also live a good life and am okay with the fact that I have one.

So it does kind of seem as if people are turning what happened to me as a choice to be abnormal that they wouldn't make. Are they saying they are braver and took a risk at a chance for a normal life? I don't know if they are, but if that is what they are saying, it seems that for most they never really do live that normal way again whether they have an ostomy or not after treatment ends.

At any rate, I think I still have confused feelings toward the issue, but would very much like to have a way to discuss it.

Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
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.
Oops, another lung Met in upper left lobe on edge of previous resection scar 11/11/19.

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Re: I have an ostomy - and I'm ok.

Postby lorrainem » Mon Jan 11, 2010 11:19 am

Temporary ileostomy placed January 2008
Ileostomy takedown October 2008
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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Re: I have an ostomy - and I'm ok.

Postby meeko » Mon Jan 11, 2010 11:56 am

I had rectal cancer and after my resection, developed peritonits. Getting a temp. ileostomy...saved my life. I had it for 1 year. It never really bothered me too much. Sure it took some getting used to and I had to wear loose clothing but after what I had been through it wasnt a big deal. I too feel that if I had to have a permanant one..I could do it without too much adjusting. I also had the full support of my husband who helped me change every time and always reassured me that it wasnt an issue for him!
rectal cancer 9/08
LAR 10/1/08
2nd surgery for peritonitis and abcess 10/08/08 w/ temp ileo
stage 2A (t3) N0/16 M0
total of 8 rounds of 5fu/Leucovoran-- 5/09
Reversal and Hysterectomy 10/09/09
Married, 2 daughters
So far ..so Good!

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Re: I have an ostomy - and I'm ok.

Postby Terry » Mon Jan 11, 2010 12:00 pm

I think that's a great idea. A site to include should be www.ostomyland.com I went there when I thought I was going to get one and they were a tremendous help.
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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Re: I have an ostomy - and I'm ok.

Postby NWgirl » Mon Jan 11, 2010 12:04 pm

Ya know, I tried to respond to that post (person w/new ostomy) twice - and both times it didn't go through - so I finally just gave up. Maybe third times the charm? :)

I had my ileostomy for one year. My tumor was right where the colon/rectum meet. My surgeon said this was my only option - period. I was completely freaked out. I was lucky - I had an excellent surgeon who aside from her great surgical skills, also knew when a patient needed some tough love. One thing that helped me tremendously in learning to adjust to my life with my ostomy - was that one of my only chances of surviving - was to have that ostomy. It was a big part of the reason I was still alive - period. Many people talk about the importance of chemo and radiation in their chances of survival - but to me, the ostomy should be included in that category as well - it helps to keep you alive! Keeping that thought in mind helped me in my adjustment to my new body image.

By the time I was eligible for my take down surgery, I had to think long and hard about whether to just keep it permanently. I had adjusted very well and life was good. Honestly - life was better with my ostomy than it is now. I'm still trying to be positive and hope things will improve (they did for awhile), but there are still many times I wished I'd just kept the ostomy. Time will tell and I know it is something I can always discuss with my surgeon if the time comes that I finally throw in the towel on this whole reversal situation.

Once you have cancer your life is never the same. There are things you lose that you wish you could regain. We have the choice as to whether to dwell on those things or take what we have and just keep moving forward. In all I've been through the past couple of years, the ostomy was a pretty minor and very managable issue.

So yeah, I had an ostomy for a year and I was VERY okay. And after being up till almost 1:00 a.m. last night because I couldn't stop pooping, I'm feeling pretty envious of those who have ostomies right now and probably got a good nights sleep! :cry:
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
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Re: I have an ostomy - and I'm ok.

Postby PatO » Mon Jan 11, 2010 12:20 pm

I don't have an ostomy and keeping that in mind I don't think it's fair to make assumptions on the topic. I'm also new to the board but have read enough about the posts here to get an idea about the people here.

I think NWgirl, Terry & meeko are on the right track here as far as being helpful. It sounds like some people don't appreciate the anxiety an ostomy creates - for those of us that don't have them. Some have had them for quite a while and I'm guessing they've come to terms with it, I would also guess that at one time most were as nervous as a lot of us here about the idea. I don't think of my apprehensiveness towards opting for an ostomy as being "anti-ostomy" and I certainly don't like reading about one board member telling others to "put a cork in the anti-ostomy" posts.

People here shouldn't make comments about the negative aspects about an ostomy, esp. those who don't have them. And people should also realize that there's going to be some concern/anxiety about any potential change in their daily life.

dx 06/15/07 stage IV mets to liver at 32
surgery 07/07
Folfox 14 rounds
Mom to a 4y/o daughter & 5 y/o son

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Re: I have an ostomy - and NOT I'm ok.

Postby eitter » Mon Jan 11, 2010 12:25 pm

Well my Sig line says I had both, went from temp ileostomy to permanent colostomy, so I had both and let me tell you a Colostomy in my opinion hands down is better.

FYI the moderators have been going back and forth about the posts over the weekend by "Guest" and some of them were not anti ostomy some were..But I have to say this because I have bitten my tongue in some posts in the past. I too belong to the UOAA site which in my opinion since EVERYONE there has an ostomy it is the best source for information. But several months ago someone said negative things here about ostomy and how the quality of life is diminished etc then someone here ran over to the UOAA site and solicited people to run over here and flame the person who was posting here and like I said it took all I had to calm down over that one. I was like wow I felt like I was in Junior High or something.

I will go on record to say my quality of life is extremely diminished because of my ostomy and this is my opinion and DO NOT condemn me for saying so! Sure I am alive but that is the ONLY good thing I can say about it, o and it is nice when you have diarrhea because we have bags, but then again if the bag fills unexpectedly then it goes everywhere. So here is my rant about ostomies love it or leave it, it is my story!

-I wake some nights with SHIT in my bed because I had an explosion over the night, this happens about once a quarter
-I have a hernia and it is as big as a large cantaloupe, and my doc does not want to repair it right now, I do have a belt, plus even so I have NO SICK time to repair it right now.
-Because of above I have to mostly, well actually always wear elastic waist clothes
-Any fitted clothes FORGET IT!
-Forget the Bikini
-I would have a hard time with someone with an ostomy, so of course people have a hard time with mine, you have to trust someone before revealing it to them or they freak!
-Smell when changing it can get very embarrassing and smelly.

I am sure I can come up with more, but who said everything on this board had to be positive and all rosy because is NOT always that and if we sugarcoat it all the time then it makes it sound like we are so happy happy with our cancer lives and that is BULLSHIT pardon me, but shit is a approved word around here.

Having said all I just said, it comes down to attitude sure my physical life sucks with an ostomy but I am making the best of it, I have no choice. So most do not see this side of me and I am usually upbeat and positive, but we all can't be positive all the time. I have taken all my lemons and made some really good lemonade.

And please do not flame me for what I said about ostomies, it is my truth my story and I am doing some very positive things with my story! And for goodness sakes do not go rally the troops on other boards against what I said either.
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

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Re: I have an ostomy - and I'm ok.

Postby PatO » Mon Jan 11, 2010 12:31 pm


I meant to say that if someone is asking questions about an ostomy, I think it's 100% acceptable for someone like yourself who has one to say whatever you think about it. Good/bad or otherwise. I don't think it's right for someone who doesn't have one personally, to point out the negative aspects.

I thought your post was great.
dx 06/15/07 stage IV mets to liver at 32
surgery 07/07
Folfox 14 rounds
Mom to a 4y/o daughter & 5 y/o son

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Re: I have an ostomy - and I'm ok.

Postby Rotorhead » Mon Jan 11, 2010 12:33 pm

Colostomy since Feb 2008 due to rectal cancer. Fan of Gaelen for about that long as well.

I have an ostomy but I am not "ok". I am awesome.

And as humble as I am handsome.

Diagnosed Stage 3 rectal cancer 11/07
chemo/rad 12/07-1/08; TME surgery 2/08
Post-surgery chemo 4/08 - 9/08 FOLFOX
CAT scan DEC 08 shows NED!
My blog: http://rotorheadsblog.blogspot.com/

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Re: I have an ostomy - and I'm ok.

Postby joeyooser » Mon Jan 11, 2010 12:38 pm

I got mine as a result of a 'leak' that developed at the resection points and I have to say I don't like it, but it's not life-ending. It smells frequently, but I don't have much trouble with it exploding or anything like that. I've had a couple of close calls when it all of a sudden just fills up and I just barely get the bathroom to change it in time. I use the hollister bags with vents and that mostly works for the most part. Yes it's embarrassing when it farts randomly and that does really inhibit my social life but I was a homebody anyway. I'm looking forward to getting it reversed - I have an appointment with my surgeon today to discuss the plans to get back to 'normal'.
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care

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Re: I have an ostomy - and I'm ok.

Postby Carolina Girl » Mon Jan 11, 2010 1:26 pm

My first doctor discussed micro surgery with me and a permanent colostomy if that surgery was not successful at getting good margins. I had micro surgery to remove my tumor, which was located in my rectum, on December 30, 2004. The pathologist apparentely didn't have a New Year's Eve party to go to, so my pathogoly report was completed on the 31st. On New Year's Day 2005, I was informed by my surgeon that the surgery was not successful and I would have to have a permanent colostomy.

After I got out of the hospital, I found that I had "communication" between my rectum and my vagina. The vaginal wall had been breached.

On January 11, 2005, I went for a second opinion on my options for a permanent colostomy or other surgery remedy. That same day I received an emergency ileostomy. What a god send! Refer to previous paragraph and communication if you don't understand why I appreciated my illy as I began to refer to it.

Illy would "talk" to me in meetings, especially after lunch! Illy broke its seals more than once and always at the most in opportune time. It leaked on my clothes, my bed linens, hey, even my husband and me once during sex. I know - Too Much Information - Sorry, but the person asked for help and information. How did I cope? With a cry sometimes, a sigh on other occassions, and a laugh most of the time. I look at it this way, every day above ground is a good day. So I had to clean up a mess now and then. All of my friends and colleagues knew about illy, so no one thought anything of it.

I lost illy to a reversal in February 2006. Some days I still miss it. Why? Illy relieved me afrom a very painful situation (communication), gave my body time to heal, allowed for the doc to do a full tumor removal and painstakingly hand stitch me back together, allowed me to complete chemo without all the bowel issues and so on. My doc said she wasn't sure if the hand stitching would hold and she might have to give me a permanent colostomy or I might not be able to control my bowels, so I might want one in the future.

I knew from the beginning a permanent colostomy could and may even still be in my future. Illy was a god send as I explained above. As I said, every day above ground is a good day and some days you just have to deal with more shit that others!

Best wishes. g
Age 52
12/04 Dx St 3B CC @ age 45
6/08 St IV CC mets-liver
3/09 Dx St 1A Lung Cancer-lobectomy
"Every day above ground is a good day!"

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Re: I have an ostomy - and I'm ok.

Postby eitter » Mon Jan 11, 2010 2:01 pm

And I also have to continue to disagree that second hand information is not good information. Why can't a person who does not have an ostomy say something about it?! What do we think studies are, second hand info, the people delivering the results get it secondhand right through studies? So if someone comes on here and says a report finds that Ostomies diminish the quality of life and they do not have an ostomy then they can't report that?! Then should we stop all postings of articles here, only positive reports are allowed?! I think not. In fact when that person came on here several months ago and said that I was thrilled, I said YES I knew I was not alone, I was not the only one that thought Quality of Life had diminished! We can't have it both ways, it is not fair, there is the good, bad and the ugly and for many some parts are the truth, their truth, might not be your truth, but it could be my truth!
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

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