Understanding the attitude towards ostomies...

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Gaelen
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Understanding the attitude towards ostomies...

Postby Gaelen » Sat Oct 25, 2008 8:44 pm

...maybe some who've expressed complete horror/fear/disgust at the idea of having an ostomy, either temporary or permanent, can help me understand why this appears to be a deal-breaking treatment issue for so many people.

Presumably, we are here because we (or someone we know) has some form of colon, rectal or anal cancer. It's not a pretty cancer. And we've discussed in raising awareness threads how talking about a kind of cancer that involves poop-elimination-bathroom issues is maybe our biggest awareness hurdle. Personally, I think our biggest awareness issue is the colonoscopy prep, but that's for another thread. :twisted: :mrgreen: :mrgreen:

Anyway--I know that the idea of having an ostomy, even temporarily, is an adjustment...and not a small one.
I don't underestimate or downplay (ever) the impact my ostomy has had on my own life, on my self-image, or on the things I am able to do. I've also been pretty honest, from the beginning, that of all the treatments I've dealt with since my dx, the ostomy (with the exception of some notable awkward moments) has been the least, lowest, smallest of my issues.

But there are a lot of posts here (and they are not all from newbies or beginners on their CRC journey) that include the line "I just couldn't imagine having a bag," or "this (fill in the blank) is infinitely superior to having a bag" or "I was so glad to have my ostomy reversed" or "thank god when I woke up I didn't have a bag!"

And there are also a lot of posts here from people who've had continuing bowel/continence issues following surgery and radiation, who didn't have ostomies or did and had reversals, and who are now lamenting that their lives are not the same as pre-treatment, and they can't do the same things they used to do. We've even got a thread going where the idea of a daily enema is being presented as a post-treatment solution which is preferable to having an ostomy. I'm not criticizing that technique--it is a viable solution. But I'm not sure what selling point I could find for suggesting that a patient avoid an ostomy because a daily enema post-treatment can give him/her the assurances of bowel control.

So help me out here--faced with treatment, side effects, and after effects which are more than likely to wreak havoc with your intestines, and keep you on a short leash attached to the nearest toilet facilities, why is the ostomy still discussed (in this group of all places!) with such horror/fear/disgust, and as if it's something to be avoided at all costs?

I'm truly not trying to judge here--but I am curious why ostomies are judged so harshly. Thoughts?
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: Understanding the attitude towards ostomies...

Postby Luv2Run » Sat Oct 25, 2008 9:05 pm

Don't know the answer to this one. Looking back ... I now wish I opted for an ostomy back in 1991 when it when a gastorentologist recommended it as a cure fo my ulcerative colitis. My general surgeon/GI doc said to try TPN and 6-MP instead. Yeah, it work for a long time, but ended up having rectal cancer in 2005.

I efuse to let my ileostomy control me!! Yeah, it's a pain to have to change it every couple of days, but people who do not know me, never know I have one. I am stil active - run marathons, hald marathons, bike, ski, etc. I do wish I had it years ago ... then I would not have had cancer.
dx ulcerative colitis @ 22 yrs
partial colectomy @ 41 yrs
dx Stage III rectal cancer -July 2005 - 46 yrs old
Ileostomy

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Re: Understanding the attitude towards ostomies...

Postby Lee » Sat Oct 25, 2008 9:21 pm

Fear of the unknown I think plays a major role. It is easier to live with what you know vs what you don't know. Living with cancer and all the side effect it brings is bad enough, add more uncertainess to it, and I think people began to say no more.

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!

Sally1898
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Re: Understanding the attitude towards ostomies...

Postby Sally1898 » Sat Oct 25, 2008 11:06 pm

I think it's two things: control, and fear. When all my parts were working, I had CONTROL. Never had to worry about getting to a strange bathroom ( can be dicey with CP) or whether I could actually conduct business once in it. If I didn't want to deal, I 'hung on' and skipped it (no wonder my sphincter wore out . . .). To this day, I LOATHE 'HAVING' to use/find/cope with new and unpredictable bathrooms.The other part of it is FEAR. Not just of the potential for leaks and blowouts, but of others' negative reactions to them. Don't want to be seen as dirty, smelly, or unkempt. I've toughened up lots in the last 10 years, but still resent the anticipation and anxiety. Resigned to it, but get tired of the grind, and the dread. Honestly, for me, life was simply less complicated, easier, pre-ostomy.I wish I had appreciated the ease then, but never dreamed what was ahead.
Dx:St. 3 rectal ca. on 1-8-98 at age 31. Perm. colostomy,friends refer to it as 'Pedro'.Favorite sentiment:Poop happens!!!

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Re: Understanding the attitude towards ostomies...

Postby weisssoccermom » Sat Oct 25, 2008 11:34 pm

I debated answering this because I am one of those who didn't have an ostomy (even temporary) and honestly, didn't want one and was put off by it. Has my attitude changed? Somewhat but not completely. So, to those who have an ostomy, please don't take any offense, because I am just answering Pat's original question.

For me, as for many others, it is the total and absolute fear of the unknown. Let's face it, before any of you had an ostomy you really had no idea what it was like, would be like or anything about it. I got so sick and tired of some surgeons/doctors telling me that I could get used to it and then dismissing the whole idea. How do they know what I could or couldn't get used to? It bothered me then and still bothers me that some (not all) doctors still are just so cavalier about the whole process. Can anyone of you tell me that it wasn't an adjustment? Is there really anyway that anybody can be prepared for having one, to know exactly what to expect? I believe its natural when we are afraid to think about the worst case scenario, to imagine all sorts of horrible things, events, etc. rather than try to look at things calmly and rationally. Its the fear of the unknown and what we perceive an ostomy to be. Our perceptions may not be reality but its what we believe reality is because no one has told us anything differently.

As babies, no one has control over their bowels, but in our society it is a milestone to gain control over that function of our body and we applaud toddlers for becoming potty trained and getting out of diapers. Gone are the accidents, the smells, the mess, etc. that all parents put up with as part of the growing up process. Its a part of life that society doesn't want to talk about, to think about or honestly to deal with. Granted, having an ostomy is NOT like being in diapers, but when everything is so unknown it seems that its almost the same. Do I realize now that it isn't - sure but its only because of the honestly and openness of people on this board - certainly not due to any help from the medical community. It's a matter of not being in control of our bodies (or so we think), and of dealing with a new way of normal.

How many times have one or more of us complained about the lack of information from rad oncs about the side effects of radiation treatment? Most of us who have undergone it know that the rad oncs just didn't tell you everything - particularly the female side effect part of it. We get angry that the doctors seem to minimize the treatments or simply just don't bring anything up about it. That's exactly how I felt about the ostomy issue. Yes, the doctor would recommend speaking with an ostomy nurse, but personally, I feel that if more doctors were open and compassionate with patients and they spent time talking with their patients about ostomies, instead of just telling them "yes, you're going to have one and you'll get used to it", there might be a better understanding of them and possibly more acceptance about them. For me, seeing the doctors seemingly avoid discussing them or helping me to confront my fears only added to my feelings of 'yuckiness'.

I have to tell you that my surgeon (she was the 5th one that I consulted) is a wonderful and compassionate person. When she examined me after rad treatments and told me that there was the minutest of scars and it was actually located 8 cm up and not at the 4cm that the other surgeons thought (my tumor grew down so previous doctors could only tell where they intially felt the tumor) and that I would not need a colostomy because it was so high enough up for a reconnection I breathed a huge sigh of relief! She knew that that had been one of my fears and was the ONLY medical professional who discussed what it meant, what an ostomy was like, etc. with me. Up until then all I had to go on was my perception of the whole process and no one to contradict me so my mind ran rampant. Had I decided to go with the LAR, she was honest and open with me about the necessity for a temp ileostomy and what it entailed, where it would be located, what it would be like, etc. She was open about the sexuality issues which everyone else avoided like the plague!

You're right Pat that people, myself included, don't have a good attitude about ostomies. I am so amazed at the strength of people such as you, Sally, Lee, Liz, Pam and all the others who have either permanent or temp ostomies that I get embarrassed that I feel the way that I do but fear has a way of humbling us and it is just something that we have to deal with and get over on a daily basis. We all have fears of something and many of those fears seem irrational to others but its who we are and what makes us unique.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
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Gaelen
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Re: Understanding the attitude towards ostomies...

Postby Gaelen » Sun Oct 26, 2008 11:27 am

Jaynee--I'm glad you answered (and everyone else, too). It helps. No offense taken at all--you're being honest and I asked people to be honest. And I think it might help some of the people to whom ostomy is being offered as a treatment to see some of this discussed 'out in the open.'

Honestly, there are times when reading threads here or on other cancer support boards, the obviously negative attitude towards having to get an ostomy as part of treatment makes me feel...I am not even sure there's just one word for it. Often the sentiments expressed re: having to have an ostomy make me almost ashamed to admit that I have one...and make me wonder if people would react in horror if they met me in person and discovered that yep, I have an ostomy. In an environment like a support forum, which claims it's all about acceptance and honesty for CRC survivors, and where an ostomy is many, many times part of the treatment either temporarily or permanently, a horrified attitude towards ostomies and frequent negative descriptions of them really does seem out of place. Even something as low-key as 'too bad you had to get an ostomy' is the kind of comment that can make someone who has one feel...lesser than. And believe me, I''m one tough chick. It takes a lot to make me feel 'less than' anything. But there it is. Not the best place for my own self-image, I'll admit.

Jaynee--did the docs you consulted before you found your final surgeon suggest that you talk to their wound-ostomy nurses, and ensure that you had that conversation? My own CRC surgeon does have a pretty good grasp of the issues of ostomies, and he's very compassionate...but he's the first to acknowlege that his wound-ostomy nurses (there are a whole team of them) are amazing and are a vital source of information in the decision process. It's his way of physician-extending...and I think it's a reasonable and intelligent use of his nursing staff, who truly are the ostomy care/use/maintenance experts. Our first appointment, when he recommended the colostomy, I spent a little more than a half-hour with him. I spent almost two hours with the nurses, who answered every question I had and about a dozen I never even thought of. They even had a model ostomy they used to explain things, and they let me take it with me to help explain things to my family (oddly enough, the one most concerned was my father, who was completely confused by the whole thing.) They also saw me for followups for the first six months (I was going back to MSKCC for treatment once every four weeks.) The only thing I really didn't get enough info about was how/when/how much to exercise...and some of that was my own fault, for not really thinking I needed much help in that area. Two hernias later...well, there was room for improvement in communication all around. ;) In April, when Dr. W recommended a second ostomy, he was the first to say out loud that a double ostomy was NOT going to be a walk in the park. And again, I spent almost two hours with his nurses. AFTER seeing the WOC nursing team, and being measured/marked for the second ostomy, I took all the information they gave me, digested it, and declined the urostomy. I chose to bet on the urologic oncolgist's surgical skill...which so far seems to have been a good bet. But the nurses and the consultation with them was an integral part of my decision making both times.

The MSKCC wound/ostomy nurses who work with Dr. W aren't unique in their approach--since then, I've discovered a great group here in CNY--and before I found them, my sister-in-law (a WOC nurse/coordinator in Albany) was my main non-MSKCC resource. BTW, she wasn't my sister in law when I got my ostomy.

For me, as for many others, it is the total and absolute fear of the unknown. Let's face it, before any of you had an ostomy you really had no idea what it was like, would be like or anything about it. I got so sick and tired of some surgeons/doctors telling me that I could get used to it and then dismissing the whole idea. How do they know what I could or couldn't get used to? It bothered me then and still bothers me that some (not all) doctors still are just so cavalier about the whole process. Can anyone of you tell me that it wasn't an adjustment? Is there really anyway that anybody can be prepared for having one, to know exactly what to expect? I believe its natural when we are afraid to think about the worst case scenario, to imagine all sorts of horrible things, events, etc. rather than try to look at things calmly and rationally. Its the fear of the unknown and what we perceive an ostomy to be. Our perceptions may not be reality but its what we believe reality is because no one has told us anything differently.


I get the fear of the unknown, I truly do. And I would *never* say that my ostomy wasn't an adjustment; it was. But I guess I wonder how the fear of an ostomy could trump the fear all of us felt when we got our dx? Or does maybe the ostomy become the scapegoat and designated acceptor of all the fears associated with the diagnosis? Reading through that statement, I could substitute "cancer" for "ostomy" and, wouldn't most of us agree, the statement would still hold true? So does maybe the ostomy become the symbol of all of the things we fear and can't control about our dx?

I do think control is a big part of it--the need for control of the facilities available to me that I didn't appreciate before having an ostomy is something I was acutely aware of afterwards. I will admit that need for control has gotten a lot less over time. But when you travel, when you show dogs (and horses, for that matter), using strange restrooms which may not meet your (or anyone's!) cleanliness standards becomes something you just deal with. So over time, total control over the facilities available to me is becoming less of an issue.

As for bowel control--actually, when I'm not on chemo or radiation, bowel control is (for me) not a huge issue. My body normalized off-treatment, and I more or less knew when I'd have output and when I'd be output-free, even though since I had hernias at the time, I couldn't irrigate to control output. So an ostomy isn't atomatically a total 'loss of control.' And having been in diapers (as an adult), I can promise everyone that having an ostomy is nothing like being in diapers. :twisted:

The thing that shocks me most about my ostomy, even today?
That I work with over 150 people on a daily basis, and maybe only a handful of them actually know that I have an ostomy.
That's not because they don't all know most of the details of my treatment, surgeries, disease, etc., and it's not because I tried to hide it.
It's because they're just not aware of it.
One of the guys who manages the clin path had to have an emergency ileo last year, due to colitis. The CP boys are a pretty rough group, and there were some sincerely rough ostomy jokes going around. I made my usual training comment that 'CP could be a really tough room,' but the boys didn't think anything about it. The guy affected was wondering what to expect from his reconnection and I told him I could give him some information and websites. This guy has known me through my whole dx, known everything about what's gone on, even run my bloodwork a couple times when I wanted a local check--he had NO idea I'd had a permanent colostomy for the last three years.

I know that people are afraid that others will look at them differently--I was at first, too. But I've discovered that I'm far more conscious of my ostomy than those around me. Hard as it is for people to believe, and sometimes even for me to believe, nobody even knows I have one unless I tell them.
Last edited by Gaelen on Sun Oct 26, 2008 2:59 pm, edited 1 time in total.
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: Understanding the attitude towards ostomies...

Postby Brendaindy » Sun Oct 26, 2008 1:09 pm

Before my diagnosis I didnt really put a lot of thought into the subject. After Dx I was terrified of the fact I had to get one. During the treatment process I came to terms with it becuase I knew it was a necessary part of getting me Cancer free.

While I am new to the Ostomy world (6 days today), Im finding that there is no smell (as long as one takes care of themself), Im still healing from surgery but there is no discomfort, and while I wouldnt wear them anyway you cant wear tight clothing.

Im not sure why someone would make up Ostomy jokes. I cant think of a single reason why someone would have an ostomy unless it was medically necessary. to make a joke about the ostomy is to make a joke about someone's health.
Stage II Rectal dx 5/08
Radiation and Chemo
LAR w/Ileo & J Pouch 10/20/08
Finished Folfox 5/4/09
CT showed NED!
Illeo reversal 7/31/09
so far... so good....

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kimby
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Re: Understanding the attitude towards ostomies...

Postby kimby » Sun Oct 26, 2008 1:39 pm

Fear and focus. When I had emergency surgery for a bowel obstruction, there was no time to talk about outcomes. It just happened very quickly. I didn't have a bowel obstruction. I woke up with a colostomy and colon cancer. The tumor had ruptured the wall of the colon. I HATED my ostomy. I cried and struggled. My husband passed out the first time he saw it, which did very little to ease my fears. I already had a limited small intestine and now the resection removed a foot and a half of sigmoid colon, so add chemo to that mix and I had some bowel issues. :shock: I seemingly accepted the cancer dx and not the ostomy. Now, looking back, the cancer I knew I could fight. There was something to *do* about it. Nothing to be done with the ostomy. No choices or decisions, just deal with it. It was easier to focus on hating the ostomy than to focus on the cancer. Fight the cancer but focus on the ostomy.

I had my colostomy for 9 months. I had heard all of the reversal horror stories and had decided to keep it. I just couldn't face the possibility of loss of bowel control, depends, etc. With my colostomy I worked (I work from my car and all restrooms are either in clients homes or public), swam, hiked, etc. I was fearful I would lose that with the reversal, and for a month or so, I did. I hated it and blamed my husband and surgeon for convincing me to try the reversal. Chemo this time is easier without the colostomy, but I don't fear it anymore. My future may very well hold a complete colectomy and permanent ostomy. I'm ok with that, NOW.

There are just so many misconceptions about ostomies. There is no odor, you dress normally, live normally. And potty differently. I do that alone anyways, so big whoop. Actually, I was traveling home from work late one night through a very rural area. No gas stations open, no fast food restrooms, nothing. I pulled over to the side of the road and changed my bag, put it all in a ziplock bag and stuck it in the trunk until I got home. Couldn't do that now with the chemo induced diarrhea! Focus and fear...gets me every time!

Kimby
DX colon canzer 8/07 age 43
Endometrial Cancer 3/03 age 39
FOLFOX 10/07,Folfiri w/Erbitux 9/08,Mitomycin/Avastin/Xeloda 1/09, external beam liver radiation 2/09-3/09,LN 8/09
mets: liver/celiac LN
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Re: Understanding the attitude towards ostomies...

Postby marian » Sun Oct 26, 2008 2:04 pm

Thank You Gaelen for bringing up this topic. It has often been on my mind and you describe it beautifully. I will never understand why some would be willing to forfeit their lifestyle to be close to a loo, or choose diapers rather than an ostomy. There is no doubt that it is a difficult transition, but it is just that, a transition into a new normal. What was most difficult for me after my permanent colostomy was the loss of something that had been a part of me since birth. It was quite odd and there was a natural grief that went along with it. My sister had a mastectomy a year before, and I often felt there was a similarity in the change we had undergone. As a society we have come to accept a mastectomy, usually a person will not mention it, but it is easily accepted if they do. Announcing an ostomy has a different reaction and we have a long way to go before we can expect a similar response. There is a tremendous amount of ignorance that remains and often it is the lack of understanding that brings about the difficulty of acceptance. While there are some who have a difficult time managing an ostomy, the majority have very few problems once the right system for their particular needs are met. In the 2 plus years since my surgery I have had no accidents and only two close calls. I haven't suffered from odor issues and on the occasions when I have "tooted" I have just excused myself and moved on. My ostomy is predictable and easily manageable, as simple as brushing my teeth everyday. Those of us with ostomies can certainly make a difference in raising awareness and understanding, but we will always be a bit too close to the subject to expect others to express their true sentiments. The people who can really help to advance the cause and understanding are the people who do not have an ostomy. They are the ones who have the ability to have an objective conversation with others. As a final note, will someone tell me why ostomy isn't recognized by spell check?
1/06 Diagnosis Stage III Anal Cancer
2/06 Chemo
6/06 Colostomy
NED ever since

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Gaelen
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Re: Understanding the attitude towards ostomies...

Postby Gaelen » Sun Oct 26, 2008 3:28 pm

kimby wrote:Fear and focus. ... I seemingly accepted the cancer dx and not the ostomy. Now, looking back, the cancer I knew I could fight. There was something to *do* about it. Nothing to be done with the ostomy. No choices or decisions, just deal with it. It was easier to focus on hating the ostomy than to focus on the cancer.


Kimby, I think you may have hit on something here...kind of what I was trying to figure out how to say...especially the part about 'accepting the cancer dx and not the ostomy' because one you could fight, one you couldn't. I had the choice of having a permanent colostomy, or not having the surgery to remove my primary tumor. And at the time, only a year into my dx, I was still considered very high risk and only marginally operable. so while I had a 'choice,' it was along the lines of 'you can choose to die of your cancer, or you can choose an ostomy and the chance at saving your life.'

Brendaindy wrote:While I am new to the Ostomy world (6 days today), Im finding that there is no smell (as long as one takes care of themself), Im still healing from surgery but there is no discomfort, and while I wouldnt wear them anyway you cant wear tight clothing. ... Im not sure why someone would make up Ostomy jokes. I cant think of a single reason why someone would have an ostomy unless it was medically necessary. to make a joke about the ostomy is to make a joke about someone's health.


Brendaindy, things sound like they're getting a little easier today, and I'm glad of that for you.
On the floor at MSKCC, there were many nurses and ostomy specialists, so everyone was very focused on helping new ostomates with getting used to the process and the equipment, and I got that for 10 days post-surgery. Then I was released and I had two visiting nurses who came to the Miracle House apartment in NYC where I was recuperating, to make sure that I was doing okay both generally and specifically with my ostomy. Each visiting nurse was a wound-ostomy specialist. And they were both men. And they werer both *cute* men...one of them was on billboards all over NYC advertising nursing as a career option. It was a situation which could have been really uncomfortable...but they were both incredibly supportive and professional.

As for the ostomy jokes...the clin path lab deals with body fluids, and most of the people I work with deal with medical issues and death, hands on. My co-workers can be--juvenile is probably being generous--but making jokes about the health of their co-worker (or my health, for that matter) is one of the ways they cope. It's not always an easy atmosphere...the typical 'tough room'...but the people I work with would walk through fire to help someone if you needed them. And to be fair, their co-worker gives and gave as good as he got--and I'm no slouch in the snappy comeback department, if it comes to that. I was the one who told them, 'geez, no mercy here, huh?' when I saw their version of an "emergency ostomy kit" hanging on their boss's door. Their boss just took it in stride and sniped back as soon as he could. Sensitivity isn't a strong suit in the lab...but they are very generous with their coffee-spot freebies. :roll:

marian wrote:...As a society we have come to accept a mastectomy, usually a person will not mention it, but it is easily accepted if they do. Announcing an ostomy has a different reaction and we have a long way to go before we can expect a similar response. There is a tremendous amount of ignorance that remains and often it is the lack of understanding that brings about the difficulty of acceptance. ... Those of us with ostomies can certainly make a difference in raising awareness and understanding, but we will always be a bit too close to the subject to expect others to express their true sentiments. ... As a final note, will someone tell me why ostomy isn't recognized by spell check?


Marian, I agree...and I think that maybe actually talking about it as ostomates and non-ostomates might help out with some of the awareness issues. On ostomy forums, you mainly find ostomates...and the occasional caregiver of an infant/child ostomate. On cancer forums you mainly find cancer patients and caregivers, only some of whom are ostomates. Maybe this is one of those places where we can start putting some awareness front and center and start putting some fears more at ease by talking about ostomies with a less negative spin.

I'm lucky in that I have close dog-training friends I've known for decades who are all, to put it gently, brutally honest. We travel together, share motorhomes and motel rooms. They've all promised to tell me if there are ever any ostomy issues--and I know they'd follow through. :oops: My co-workers? Brutally honest, to a person. So when they tell me they 'can't tell,' I can trust them...and that's helped me to relax a bit.

As for why 'ostomy' isn't recognized by spell-check...well, I never noticed that. But neither is 'ostomate.'
Maybe that's another symptom of where awareness lags behind reality. ;)
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: Understanding the attitude towards ostomies...

Postby PammySue_51 » Sun Oct 26, 2008 5:30 pm

When I initially had my ostomy I was incredibly sick and in the hospital and my basic thoughts were "so what." However, I had my colostomy, came home, and allowed myself to become thoroughly depressed about it all. Then I spent 8 weeks in the hospital with necrotizing fasciitis and spent all of my mental and physical energy trying to stay alive so again I didn't think much about the ostomy and the nurses took care of it for me (I was too weak and couldn't get out of bed). Then I came back home to continue the healing of my leg and start 6 months of FOLFOX. I was STILL obsessed about the colostomy as my surgeon had told my family he would never reverse it because of all I had been through. I was mad at him because I didn't feel it was his decision. So...I continued to obsess and five months later after my continued pressing he said that it was a possibility "down the road" to have it reversed.

By the time I finished FOLFOX I had adjusted to it. I read some of the horror stories of the few...I'm sure...people who had real issues after having their ostomy reversed and I started to change my thinking about all of it. I'm keeping mine. Believe me, when you are going through the diarrhea and cramping issues that chemotherapy entails (and I had tons of them) it was far easier to deal with the pain and the frequent output in the comfort of my recliner. :)

Now...finally...I joke about all of it. My friends ask me all of the time what it is like dealing with a colostomy. To be honest it's no big deal. My one friend was here one day and said "Pam, do you still fart with your colostomy?" and we both burst out laughing, and I said yes, I do, you just can't smell it but if I start to look pregnant after a while you'll know that's what is going on. I have come a long way in dealing with this thing. Would I rather not have it...sure I'd rather not have it...but honestly I don't think about it anymore (well, unless I have taken 1 TBSP of molasses instead of 1 tsp...that's for you Gaelen). Now...that wasn't funny, especially at 3:00 a.m.

For me I think it all centered around the fact that it was something I could SEE and it was a reminder every day that I have cancer, even when I feel well. It's a visible reminder that things aren't right down there.

Gaelen, thanks for bringing this topic to the surface for those who are fearful, embarrassed, etc. about an ostomy. I traveled to Las Vegas with a friend in early March (first time I had traveled with a friend since surgery) and I apologized constantly about "stinking up the bathroom." Cathy said that honestly, she could not smell it and I know she would not lie. So...I lost my fear of traveling with an ostomy now, as well, though I think it might be a big tricky changing a bag on an airplane if there is turbulence.
Pam

I Peter 5:10-11

Diagnosed 9/06 Stage IV, 19 mo. chemo, now out of chemo options except for possible clinical trials. 9/3/08 First of two Sir-Spheres procedures.

*Faith is the wind that blows the sail of our ship to the desired destination."

johnmeissner
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Re: Understanding the attitude towards ostomies...

Postby johnmeissner » Sun Oct 26, 2008 6:59 pm

I talked to my wife about this subject, while I was reading the thread. I asked her if it would "bother" her, or make me "less attractive if I had one. Her answer was "It would suck a lot less than being a widow."

I count my blessings that I haven't needed one. But if it ever came to that, I would learn as much about it beforehand as I could, pushing for answers whenever I needed to.

I don't think one would necessarily "get used" to having a bag, but rather be "accepting" of it. After all, as many here have so wisely said, after cancer treatment, you have a new normal, never to return to life as it was before, in regards to normalcy. I understand the fear others here have talked about, having leaks and what not, in social situations. I think it's not an easy fear to overcome. But I would think that the sooner you accept having a bag, whether temporary or permanent, the easier it becomes to deal with those "situations" that arise in life with a bag.

This type of discussion is why I like being a part of the colon club so much. Because so many people here care about each other so much. Many, heck, most of you have gone through so much more in your journey through cancer than I have. I admire each and every one of you a great deal. Thank you all for being so willing to share your lives in the hope of helping others.
Hi, I'm John. But you can call me NED! Meet our son Jimmy at http://s306.photobucket.com/albums/nn243/jimmymize/

NWgirl
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Re: Understanding the attitude towards ostomies...

Postby NWgirl » Sun Oct 26, 2008 7:53 pm

I think I can share a different perspective on the whole ostomy issue. When I was 16 my father had colon cancer. I'm not sure how long he had it - but the last year of his life (he died shortly after my 17th birthday), he was pretty sick from the chemo and radiation. From what I've been told, things were a lot harder back then as far as treatment goes (that was about 25 years ago). He had a colostomy. Me, my brother and sister knew little to nothing about the colostomy - my parents didn't talk about it. I think he had to irrigate it. He always did this with the help of my mother in the back bathroom of our house - and me and my siblings pretty much avoided it as best we could. I vaguely remember going in there and seeing "things" around the sink that he used, but I don't remember any specifics. The whole thing was mysterious, smelly and gross to us. It seemed to be a problem for him as he always needed my mother to help him. We never discussed my fathers cancer or his colostomy much other than my mother telling us he was sick and probably wouldn't live. We were never emotionally close to my father.

Soooo.....when I learned that I'd have to have an ileostomy at the age of 43 (I didn't know the difference between a colostomy and an ileostomy) I completely freaked out. It was worse than learning I had cancer. I attribute this to the secrecy and "unknown" factor surrounding my father's colostomy when I was growing up. I thought my world had come to an end and couldn't imagine living with an ostomy. I was lucky though. For starters, I had a compassionate and caring surgeon. She knew when to be kind and she knew when to be firm. And she made me realize in no uncertain terms, that it was an ostomy or death. My tumor could not be removed - and my body could not be put back together, without the ostomy to allow it to heal. Also, she set me up with an amazing ostomy nurse. My ostomy nurse didn't just help me with the logistical issues of how to care for the ostomy, but helped me work through the mental and emotional hurdles I was dealing with. Lastly, my husband and friends all made me feel that it made absolutely no difference to them - I was still me and they still loved me - no matter what modifications had to be done to my body. They let me talk about my fears, my disgust, my concerns - everything. And I got over it because there was no other option. In my mind, my ostomy was part of the treatment that would allow me to live with my family for a longer period of time - and that was all that really mattered to me.

I have two children - a 6 and 8 year old. I was determined not to let them be traumatized as I had. They know all about my ileostomy. They have seen it - they have showered with me (w/o the bag), they have watched me change my bag. They know it stinks. I don't require that they be around me when I'm changing a bag, but they are welcome to be there if they wish. They don't have to like the bag, but they know I do not tolerate insensitive comments about it - and they know it is part of what has helped to keep me alive. I've even showed them diagrams of the human body and explained in very simple terms how an ostomy works and why.

I completely understand WHY people feel the way they do about ostomies. When given the chance, I educate people about my ostomy. Most people I talk to are pretty interested and fascinated when I tell them about it. If people really understand what an ostomy is, how it works, how it is cared for and it's purpose, I think the mystery is taken away and it's really no big deal. I'm having reversal surgery next week after having lived with my ileostomy for a year. I figure my chances of success are about 50/50. But I also know if my surgery is not a success and my quality of life is compromised, I am open to a permanent colostomy. It's not my first choice, but I know I can do it and I'll be okay. If someone had told me a year ago that I'd feel this way I'd have told them they were crazy!

I think there will always be people who are uncomfortable with the whole ostomy issue. But I think most people, once they understand ostomies, are okay with them. Just as we educate people on colon cancer, colonoscopy's and the like, I think we should educate them about ostomies. Not that it has to be small talk at every cocktail party you attend, but when the opportunity presents itself to educate someone - by all means do so.
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

laura3364
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Re: Understanding the attitude towards ostomies...

Postby laura3364 » Sun Oct 26, 2008 8:17 pm

I am soooo glad you brought this up. As a newly diagnosed patient who was told in no uncertain terms I was that 1 in 10 who would need a permanent colostomy because the tumor had invaded my sphincter, I was a little bit disturbed to read posts from people who absolutely could not tolerate the thought of this. I was probably more comfortable with the idea of an ostomy for two reasons: One, I had spent the last 18 months of my professional life creating an education program about ostomy surgery, leaning toward laparascopic surgery, so I knew all the terminology, worked very closely with surgeons from the ASCRS, talked to ostomates, and was made to feel it was not a big thing. Secondly, 8 months before my diagnosis, my father had emergency surgery for a ruptured colon and had a temporary ostomy so my family had been living with the concept for awhile.

However, I will say the concept is entirely different when it is happening to YOU. I did cry about it at first, did the whole, "it's not fair" thing, and then thought, well, was it fair for all those others who needed ostomies? Why was it okay for them and not you? I had always had bowel problems, way before my cancer, and I did actually think that going in a bag might be easier that the constant diarrhea I had whenever I was stressed out. I had a very emotionally healthy attitude toward this when I went for my surgery. The horror and the anger came after that. I had asked repeatedly about seeing the ostomy nurse prior to getting marked for my surgery and was told it was not necessary. This is my biggest regret -- I KNEW it was necessary and I didn't trust my own instincts. I saw her for less than 10 minutes while she marked me and less than 10 minutes after my surgery. She gave me little instruction about the proper way to empty and clean the bag and no one looked at my ostomy until the home care nurses came after I had been discharged. My biggest advocate was my father, who knew how to help me because of his own experience. Right now I am having the "oh my god I can't wear anything because the bag is visible under my clothes" syndrome, but I would have to say, after the first six weeks, the ostomy has been the least difficult part of cancer and treatment. 10 weeks after my ostomy I was on a trip to Amsterdam and was very comfortable traveling, etc. I'd rather have my ostomy than chemo and radiation any day and twice on Sunday.

Fear of the unknown is one thing, and simple not knowing or understanding is another. Osotmies are rarer than we think. I know this because for my
APR surgery, all the interns wanted to come and look at the stoma even though that had been in place and functioning fine for six months. The other part of it is what I call the OMFT syndrome (One More F*&#$%@ing Thing). You are hit with so much when you are diagnosed, you can't believe you have to deal with this horrible thing too. Most people are uncomfortable with their bowel habits as it is and have deep shame even though elimination is a perfectly normal human function. There is something fundamentally "dirty" and shameful about not being able to control your bowels, as someone pointed out. Between fear of the unknown, loss of control, and OMFT, I can understand why someone would be expressing fear, horror and disgust about having an ostomy.

But I have to say it made me feel "less than" in a place where I thought I had found people who would be understanding and supportive. I can imagine the shock and surprise of people who had emergency surgery and suddenly woke up, unprepared for this surgical alteration. While I am happy for people that don't need ostomies, I do have a hard time with the idea that it is the most repulsive, horrid thing that could ever happen to a human being. Especially when it is expressed here on this board. Rectal cancer is hard enough to deal with and accept; the constant subtle messages that it could have been prevented it if I ate better or exercised more; the idea that my ostomy can never be reversed....I deal with all that pretty well out in the world. I have received so much support from this board it is wonderful but every so often I do get the feeling that having a permanent ostomy is not what people want to hear and in a way sets me
apart from the majority of the group. What really kills me is the insensitivity of medical professionals who ask, "So when is your reversal?"

That said, when people say, "I'm so glad I didn't wake up with a bag" I realize, I would have been jumping for joy, too. One thing you need to realize is that people talk one way about something in the abstract " Oh, I could never wear a bag; I know I could never deal with that", and show a very different side when it becomes concrete. Those who want to avoid an ostomy or can't bear the thought of it...most likely, we couldn't either until it happened to us. And some people really, really can't. People are resilient in different ways, and for the most part, know what they can and cannot handle. I am fortunate that I can handle my ostomy well, and that this board allows me to be here for others who may need ostomy support.

Give me an ostomy over FOLFOX anyday...

Laura
Rectal cancer dx 11-07
Ostomy surgery 1-23-08
Radiation and Xeloda 2/08-4/08
APR and posterior exenteration 7/08
Start folfox 9/08 for 6 mos
Cancer spread to hilar and mediastinal lymph nodes April 09
Start IFL + Avastin June 09

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eitter
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Re: Understanding the attitude towards ostomies...

Postby eitter » Mon Oct 27, 2008 12:54 am

This is a very tender subject for me right now....my greatest fear was to wake up with an ostomy and I did! Then it was a temp ileo and then I suffered a MAJOR REVERSAL FAILURE and now have a perm colostomy and I can't imagine my life without my buddy(ostomy).

Saying a spouse would be ok with an ostomy is one thing, because mine said he would be. But when push came to shove and I ended up with one I was told how disgusting my body was now and the two times we had sex in the past 3 years I was told it was all he could do to hold back throwing up if he had to have sex with me again! I have always been a very self confident person, full of life and my body looked pretty darn good in a bikini! And now all I hear ringing in my ear is how disgusting my body is! So needless to say my divorce will be final by my 24th wedding anniv on November 30th. And I am left wondering who will ever look at me and tell me I am beautiful, besides my mother of course! I cry at the thought of it, I cry right now! Will anyone ever love me again, I feel like such damaged merchandise. But then again I go look at the Colondar and think how beautiful all those bodies are......and my husband can't stand the site of the Colondar! I admit I am jealous of those of you that have spouses that are supportive, look at your body and still think you are beautiful, you all are so blessed!

So now I try not to think about it. I have immersed myself in working towards helping others, getting the word out about CRC, Lobbying and on the UNDY 5000 committee and try not to cry about it.
Blessings,
Liz DENNIS
Tempe,AZ
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
http://www.runlizrun.com


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