I have an ostomy - and I'm ok.

[hannahw]

I asked my board certified colorectal surgeon, who's probably about 45, if he'd ever had a colonoscopy. Nope. "You really should," I said, scoldingly, "trust me, you don't want to get cancer."

You know, there are just some things I don't think I'll ever understand, the surgeon who performed my right hemi-colectomy is the same surgeon who operates on lung cancer patients. He's a thoracic/abdominal surgical specialist, and very good at what he does yet he himself is a heavy smoker. I can't imagine operating on a lung cancer patient who's been a long time smoker, then afterwards going out for one myself.

I don't mean to place any blame, I just don't understand I guess. You would think these people (surgeon's) would treat their bodies better than anyone out there, or at least they've got the know to have simple procedures done that could potentially be life-saving.

Isn't it ironic that some of the people in the best position to know better or sometimes some of the worst offenders when it comes to health? I suppose, among other things, this speaks to the nature of addiction and stress. It can be hard to kick addiction no matter how much you know. It can be hard to deal with stress in healthy ways. At the very least, some of the worst coping mechanisms for stress seem to be a product of convenience as opposed to informed choice. Not to mention the impact of what's available to you in the environment in which you spend most of your time. For example, at our local hospital, the cafeteria food isn't that healthy and there's almost nothing nearby. Of course, a person could bring their own, but when you're working 12-18 hours a day, that may not be an easy thing to do.

One of my Dad's docs had a partner who usually smelled like an ashtray. I didn't want to make a big deal out of it because he was rarely in the office, but the smell of cigarettes is kind of clingy. It permeates everything so eventually it's not just the smoker who reeks, it's everything they're around. I was finally going to talk to the office manager, but then the doc moved to a different hospital so it didn't matter.

[turtlemama77]

Brand new ostomate here, since January 6th, 2010, as a result of stage III rectal cancer, tumor low down in my rectum so it was APR surgery and colostomy for me too. I don't have a whole lot of advice to offer yet, but I enjoy reading other stories and information.

As for how I feel, my feelings are mixed right now. It was the surgery or death, so the choice was a no brainer. My husband is very supportive and learning right along with me, so I think that helps. But overall, I'm okay too.

[Surroundedbylove]

I wish I could fin the link but sorry I can't right now. Anyway, there was a wonderful article I found that had been published in the journal Cancer or in the journal CA-A Cancer Journal around 1985. It specifically studied the psychological adaptation of ostomates and compared ostomates who had an ostomy because of cancer to ostomates who had an ostomy for other reasons (like ulcerative colitis, etc). In the study, those who had ostomies because of cancer took longer to adapt to the ostomy psychologically - about 4 to 6 months. Those who had the ostomy for other reasons usually adapted around 2 months. The basic thought was that there was more time before the ostomy surgery for the patient to get their head around the idea (my words) for the non-cancer group - almost like they chose the ostomy so it was easier to adapt. Anyway, I toss out the information so if anyway is searching this thread they can try to find that article - it really helped me understand the psychological ups and downs I had with the ostomy adaptation. And more than anything it helped me realize I was normal as I adapted and that eventually I would be fine with it - And I was.

[rock]

Gaelen-----
Thank you so much for giving us an" open mind" to colostomy.---Heart and Soul--
We all need each other to share our thoughts on this.-------We have no place to go----for understand.
It look like about 11 of us had to have a permanent colostomy here and many more in the "same boat" as us.

Stage 2 rectal cancer
Permanent colostomy June 2009
@ 45 years old-cancer free for now!!

Some of the same stories you all shared ----the cancer was just too low.

I would ask for some pray for me -----I have a CT scan coming up the 26th and a colonoscopy on the 28th this month.
I will see my onc doctor 29th. I feel everything will be OK. It will be my 1st --3 month check up.
Thank you so much for letting me share. Have a great week!!!!!
The girl from Nebraska!!!!

[kanga]

I have a permanent ileostomy as a result of stage III 3C rectal cancer. I have had my ostomy since April 30, 2008. I had a no nonsense colo-rectal surgeon. I was 47 at the time of diagnosis and had been referred to her by OB/GYN who found the rectal mass during a routine female exam. (I had no syptoms.) She did a colonscopy and came out and met with me and told me that an ostomy would be required either an ileostomy or a colostomy and that we needed a pet/ct before decisions could be made. Luckily the pet/ct did not show anything in my liver or lungs but a number of my lymph nodes lit up in my abdomen. We did test for lynch (HNPCC) only two tests were commercially available at that time. I also has a number of polyps removed at my colonoscpy as well as some family history (no indication of screening before age 50). After a lot of research and a lengthy discussion with my surgeon, I chose a permanent ileostomy. In addition to the ileostomy, I had a total hysterectomy including ovaries and a grassilus flap procedure(a thigh muscle in pulled up to reinforce the bladder.) I don't regret my choice. I have two daughters now 9 and 10 who need a mother. So mom poops in a bag now. So mom has some issues from the radiation and chemo. Mom is still here and learning to live with the new me. Yes, I wish I didn't have cancer but I made a choice I can and am living with.

I wear many of the same clothes I wore before. I go to Court (I am an attorney). I do my job. Yes, I have an extra dress, hose and shoes in my office. Yes, I have had to fight with Court security to get approval to bring my ostomy kit including scissors into the courthouse. Yes, I have had to change my appliance in the restroom at work. But, I am alive and NED.

[hannahw]

Question: has anyone found that the demeanor of the surgeon (and team) and/or the helpfulness of the first ostomy nurse had any impact on your life as an ostomate.

My Dad's surgery was of the emergancy variety so there was no real pre-talk about what to expect, no opportunity to prepare beforehand - mentally or otherwise. The first ostomy nurse was ok, but the second ostomy nurse was awesome. She really helped my Dad take control of the ostomy. My Dad is not easily thrown off so I know he would have been fine either way, but I did feel like the second ostomy nurse sped up the process because, as has been discussed, she made it so my Dad didn't have to re-invent the ostomy wheel. She's an expert. She shared her knowledge. My Dad is no ostomy expert in general, but he's an expert regarding HIS ostomy and I think that helped him mentally. Knowing how to handle problems so that he didn't feel restricted by the ostomy helped him get back to normal living.

Not all surgeons are willing to discuss the ins and outs of ostomies. As my Dad's urologist said about urostomies - "I put 'em in, I don't manage 'em. That's what the ostomy nurse is for." Probably true, but I would think some pre-talk about what to expect would be helpful (even if the doc was simply referring you to an ostomy nurse beforehand). To the credit of my Dad's urologist, I've heard his "ostomy plumbing" talk and it is very informative and does give the patient an idea of how the thing functions and what that means. He talks mechanics, not maintenance.

Anyway, just curious if anyone feels like certain factors either helped or hindered their ability to adjust to their ostomy and whether there is anything they would recommend to new ostomates in terms of information to ask for, especially beforehand and immediately after.

[southernkiwi]

Hi, Carolyn here. I've had a temporary ileostomy for 18 months. Colon and rectum removed, J-pouch formed but frustrated by a leak and infection, so a second surgery to create the temporary ileostomy. Waiting for takedown sometime soon.
I had really good support from an ostomy nurse, whom I saw fairly often during my 2-month hospital stay.
My ileostomy often feels like a hydroslide - doesn't take long for input to whoosh right through, and I struggled with dehydration while having chemo. Still have to be careful about diet (especially sugar - fibre is pretty OK these days). I've never kept a food journal but I pay pretty careful attention to what I eat, and everyone seems to be different RT what they can tolerate. Gas used to bother me at night until I realised that I could "burp" the bag (like a hotwater bottle) without getting out of bed - made a huge difference to my sleep cycle, which made a huge difference to my over-all ability to cope.
I'm hoping that takedown will work OK for me but I'd be happy with a permanent ileostomy - it's manageable and life-saving and somehow miraculous in its own mollusc-like way.
I've come across the UC/cancer coping divide too - UC people love the ostomy because they feel so much better as soon as the colon is gone, whereas most cancer people come out feeling like we've lost something valuable...

[Gaelen]

Hannahw, maybe the reason I had appointments with specialty ostomy nurses right away (before surgery, and then in the hospital) had something to do with:
1) urban area (NYC)
2) I was at a major cancer center (MSKCC)
3) I was seeing a board-certified colorectal surgeon. There are a group of ostomy nurses associated with the CR surgeons, in the same offices, and they work together. Maybe other board-certified CR surgeons don't associate their practices with ostomy nurses, but mine do.

I'm frankly a little appalled at a urologist (or any gastro-oriented doc) who'd say something about ostomies like 'I put 'em in, I don't manage 'em - that's for the ostomy nurses.' While my CR surgeon relies heavily on his ostomy nurses, he knows enough about ostomies to be able to discuss management with a patient (and he knows when to call in the WOC/RN cavalry. ) The urologic surgeon is the same (and uses a similar group; he keeps office on 68th St rather than 53rd St, so his ostomy nurses work out of the hospital.) It was my CR surgeon that told me that having a double ostomy (colostomy + urostomy) was not double the effort, but more like quadruple the adaptive effort - and while he was recommending the double ostomy, it was the information from HIS nurses that talked me out of it. So yes, I do think the surgeon's attitude makes a difference, and I definitely think that a surgeon who puts in ostomies should be working close-in-hand with a group of wound-ostomy nurses who can fill in the gaps, answer the questions, be the ostomy resources the doctor may not have time to be.

But the doc who puts in the ostomy should also understand the ostomy - in the same way that the orthopedist who replaces a knee should understand how the new knee is going to work and what a patient needs to do to recover. Sure, a physical therapist is going to take over in that new knee recovery, but the surgeon needs to know what's going to be expected, and how to gauge progress. Same with ostomies - and a surgeon who understands them, how they work and how they affect his patients, is truly treating the whole patient and not just coming in to make a guest-appearance with a scalpel before bowing out to the next operating room!

In the beginning especially - for me, right after my diagnostic pre-op meeting - my surgeon has patients meet with the ostomy nurses. You see the doc for about a half hour. My meeting with the ostomy nurses lasted closer to two hours - they marked me for surgery, explained ostomies from start to finish, gave me information and samples, and did a very thorough pre-op ostomy teaching. Then, since surgery was in the major cancer center (MSKCC), I saw ostomy nurses who are assigned to the CRC floor but who also circulate onto other gastrointestinal surgery floors. When I was released from the hospital, still in NYC, my visiting nurses were both wound-ostomy specialists. From these folks (some women, some men) I learned a great deal about managing my ostomy before my surgery and after.

What I didn't have in the beginning was local support - since my surgery was done in NYC, that's where my nurses were. In the beginning, I relied for information on my sister-in-law, who is only a couple hours away and is also a wound-ostomy nurse. Since I had reliable help accessible by phone and had gotten a lot of real-time instruction in the weeks immediately following my surgery, I didn't actively seek out ostomy professionals here at home.

Then, a couple years after the ostomy placement, when I had some questions that could have used an ostomy nurse's eye, it took awhile to hook up with ostomy nurses here in (smaller) Syracuse. Finally found a group through another patient, but it wasn't easy to hunt them out. The visiting nurse I had in central NY had little/no experience with ostomies. By contrast, in the hospital in NYC, the only two people I encountered in three hospital stays who didn't know how to help me with my ostomy (or were a bit clumsy at it) were an otherwise-awesome colorectal surgical fellow (she wanted to check my stoma after surgery and reattached the ostomy bag so that the drainage output was pointing off to the left instead of straight down) and a brand new student-nurse...who was learning about ostomies assigned to a more experienced RN, and the pair had me as a patient. By the end of my first 10-day stay, the student nurse was already pretty good.

I guess what I'm saying is that this might be one of the reasons (that we never cite) to look for a board-certified colorectal surgeon and/or to consider surgery in a major cancer center when your colorectal surgery isn't emergent - it's the law of big numbers. These folks deal with ostomies all the time, and the experience shows in the patient care and education they provide.

I know some people have satisfactory resections done by general surgeons - but I wonder if the ostomy nurse - CR surgeon professional association I benefitted from as a patient in NYC contributed to my rather quick success with my ostomy? When surgery happens on an emergency basis, and there's little/no pre-op counseling, can a patient get a referral to a wound-ostomy group from the operating doctor? I can see where if I'd had my surgery done here, I might not have gotten the immediate, extensive hand-holding that I got both pre-op and after surgery in NYC...and without the education and professional support I got in the beginning, my outcome might have been slower getting to functional and content.

[BrownBagger]

I was pretty surprised that the ostomy nurse I dealt with at the hospital in Syr apparently didn't know the difference between an ileo j-pouch and a colonic j-pouch. She kept telling me that because my chart said I had a j-pouch, that I no longer had a colon. Man, was I confused until I talked to the surgeon and got it all straightened out. I kept thinking maybe he pulled the old switcheroo on me. I was pretty drugged up at the time.

[Lee]

Question: has anyone found that the demeanor of the surgeon (and team) and/or the helpfulness of the first ostomy nurse had any impact on your life as an ostomate.


Anyway, just curious if anyone feels like certain factors either helped or hindered their ability to adjust to their ostomy and whether there is anything they would recommend to new ostomates in terms of information to ask for, especially beforehand and immediately after.

My colon rectal surgeon advised me to see an ostomy nurse prior to my surgery as I would be getting a tempoary colostomy. Seeing the surgeon, I learned 2/3 of my rectal muscles had been effected by radiation (my thoughts on hear this was no wonder I had no rectal control anymore). At that point we were still going ahead with surgeon taking everything out and then recreating a new rectum. Goal would be 3 BM daily but possibly 10 or more BM daily. I would be retraining new muscles and we had way of predicting that outcome.

The ostomy nurse wanted to see both my husband and I, like Gailen, I was marked where the colostomy would go. The ostomy nurse gave my husband and I the run down on an ostomy. With all that I had been through with radiation at that point, my husband and I realized I could have my NORMAL life back with the colostomy. I realized if I beat this cancer, I did not want to be tied to the toilet, I wanted that ostomy, and my husband supported me 100% in that decision. I gave my surgeon carte balnc to take all she wanted, just get all the cancer.

I went through a learning curve, but adjustment was fast and easy, probably because it was my decision. I liked the fact I could leave the house and not worry about an accident happening at any moment. I didn't have to wait until i was home for the day to have my first meal of the day. I could eat what I want again. First time hubby and I went out for dinner following my surgery, we were driving somewhere when my stomach made "THAT" loud noise, hubby spoke," isn't nice to know we don't have to rush home for that anymore". It was wonderful not letting my bowel dictate our lives anymore.

Best advice I can offer, knowledge is power and having a ostomy can actually be a good thing.

Lee

[bdurant]

My husband is not a poster and has no interest in being on a computer. But, I have an input. "My husband has 2 ostomies and we're both ok and glad to have the opportunity to live". We look around and there are so many who have had to suffer much more. We watched my brother suffer from throat cancer, then the horrible pain from treatment. Perhaps, that's why my brave husband continues to say "This is nothing, Brenda". It's been a rough battle, since 2005; but, Dale has experienced little pain and remains positive. All of his co-workers tell me that he doesn't even act like he has cancer. He lives each day and refuses to allow cancer to have complete control of his life. His MDA team of doctors are amazed by his attitude. He's taught me a lot. He's not perfect; but, I don't know anyone who could find fault in the way that he's handled this battle.