Among many, many who've needed it and accepted it, I've had two patients who refused colostomy. One is dead, the other alive and well. More than that: both eventually had colostomies, and each said, nearly identically, "If I'd known how easy it is, I'd never have refused."
No one likes the idea of a colostomy. When talking to a patient who needs one, I try to point out that there's nothing -- NOTHING -- a person who has one can't do. I list a few famous people who've had them, talk about the various ways to handle it. With enough education -- which, unless there's no time, always includes a visit ahead of time with an ostomy nurse -- people generally accept the idea and we move ahead. Not these guys, no frickin' way. I tried. I really did.
Step one in curing colon cancer is removing the portion of bowel that contains it, with some room on either side to be sure you're not leaving any tumor behind. Fairly early in my surgical life, it was learned that for rectal cancer, it's not necessary to give as wide a berth on the south side as had been believed: lymphatics and blood from the low rectum tend to flow upward, so if cancer cells were to spread locally beyond the obvious tumor, they'd be heading north. Less than an inch beyond a tumor in the deep pelvic part of the colon is considered safe as a point of division. If that leaves enough ano-rectum to sew to (staple to), you can re-attach the ends after removal, avoiding colostomy. People with tumors located pretty far into the pelvic confines have been able to have curative operations with re-attachment -- but it's not always possible to be sure ahead of time whether things will work out. You have to leave open the possibility that, in the name of safety -- in the name of choosing cure -- you might not be able to hook the ends together, and the patient will end up with a colostomy. No frickin' way, doc, these guys said. I'd rather die than have one. Period. Non-negotiable. Try as I might, educate till my brain was empty, there was no budging. So I operated anyway.
My rule of thumb (rule of finger) is that when the tumor is high enough that I can't feel it with my finger on rectal exam, I'll have enough room to get it out and hook the free ends up. In each of these men, it was barely beyond.
Patient A was in his forties, and his tumor was a big one. There's no question that, had he not refused, I'd have given him a colostomy: I could work my way past it, but not far enough within the safe-connect zone. I wanted to go further, but he'd given me no choice: I got a little bit beyond, removed that part of the rectum, and stapled it all back together. Patient B was late sixties, with a smaller tumor. In his case, we elected (I with some reluctance) to remove the tumor simply, transanally. Both men got local radiation: A got it pre-op, B post-op.
I followed Patient B very closely; Mr A came in for a while, and then disappeared. When B's tumor recurred a year or two later, I told him he was out of options: the remaining chance of cure was ano-rectal resection and permanent colostomy. Unhesitatingly, he agreed. Despite the prior radiation, he healed fine and never looked back (as it were.)
Patient A wasn't as lucky. When he re-appeared, he was in big trouble: the colostomy was because of impending obstruction. Not long after, his kidneys were obstructed, too. But before he died, he'd noted that the colostomy was nowhere near as bad as he'd thought it would be.
It may be apocryphal (if you're reading this, medblog-addict, maybe you could de-lurk and let us know): I've heard of doctors being sued for failing to talk someone into an operation. More properly, it was (so the story goes) for enumerating possible complications to the extent that the patient freaked out and refused, later to suffer the consequences of not having had the surgery. Short of tying him down and dragging him into the OR, I don't think there's anything more I could have done for Patient A. But it still bothers me. Mr B was glad to have had a couple of extra years without a stoma, and is cooking along just fine. I wish I knew the lesson.
Looking at comments on my previous post, and knowing from my own experiences, it's apparent that consent is a much cloudier issue than those who urge those forms upon us would have us think. Both for doctors, and patients. What we say, what they think we say; what they heard, what we think they heard -- it's as flimsy as a curtain of fog. When you're sick as hell, any consent you give is subject to the effects of the illness, maybe the drugs you're getting. Even when it's an operation planned well in advance, it still is questionable what "consent" really means. I've seen the fear-glazed eyes, whose opacity blocks words. Consent is just a concept, a hall of mirrors. It's vapor.
In that impossible best of all worlds, where people eat well and wars don't happen, where lawyers spend their time painting and planting flowers, all doctors are worthy of trust, and all patients trust them. Doctors, in other words, are like me. Patients are like you.
46 comments:
Cancer is a situation where it might be easier to consent to surgery. I mean, it's THE most classic and understood treatment for tumors. It gets really tricky for patients with other problems, like chronic pain. Sometimes there really is a feeling that the doctor is looking to make a sale. I feel like this is really common in gynecology, particularly with hysterectomy. Worst case scenario, you think your doctor thinks your body is an ATM on payday. I've been reading about gynos being VERY upset by interventional radiologists stealing hysterectomy business from them by using uterine embolization therapy to shrink or remove fibroids at a fraction of the cost or recovery time.
I hope there is still a good doctor left out there if I ever get cancer.
celeste, as a mostly cheerful but still occasionally grumpy survivor of surgery for cancer, let me point out that it all depends on the kind of prognosis anyone can try to offer you before the surgery. There's a big difference between surgery intending to cure you, if possible, and surgery that can only palliate symptoms. There's also a difference, at least in my head, between the kind of decisions a surgeon might make intra-operatively for someone who has a very good chance of healing afterwards and living with it for long healthy years, versus what you might subject a patient to whose years are probably more numbered, whose ability to heal will be compromised by adjuvant chemo, etc. I guess I'm saying that not even "life or death" surgery is always "life or death." In my view, the best surgeon is the one who, if things go well and I do live through it, will help me celebrate my having survived and having a much better prognosis, post-surgically speaking, by now treating me like a living person, not someone on still on death's door and therefore without much in the way of meaningful choices or preferences besides "risk all and trust me." It's a fine line, I guess, but I am willing to believe that it makes a giant difference to outcomes, and that onc-surgeons who learn this have better outcomes.
My onc's NP told me, long after my surgery, just how worried she had been about me in the days afterwards, because I lay there so passively and uncomplainingly, and how she didn't really become optimistic (whatever she allowed to show in my presence) until about day four, when I finally just demanded that they remove the damned Foley this minute, for christ's sake, and get a commode in here. It's the only time in my life I've ever been told that a person actually found herself a little weepy--tears of joy--when I complained about a "minor inconvenience."
I posted on the fine-line aspect of it a while back, and I've got a couple of posts coming up (I write ahead sometimes) about "attitude." I think this is a very important aspect of the surgical "experience," for lack of a better word, and I'm glad to see these comments.
Anonymous, I think I was probably referring to more simple kinds of tumors. Most patients' gut reaction is to get it out. Of course, so much depends on the cancer in question.
I'm also familiar with the more complex cascade of problems. We recently dealt with a relative who spent a 10 MONTHS SOLID in the hospital. A colonoscopy punctured the colon, several surgeries were done to clean out peritonitis and repair the bowel, MRSA set in, and several surgeries were done to clean out infected areas and to replace spinal bones that were eaten. Then there were the surgeries to try to repair the damaged vocal cords from the respiratory interventions (leading to a permanent trach and general medical fragility). I totally GET that you have to ask what benefit is expected for the risk. We didn't end up going to a funeral, but now we deal with somebody who can't muster enough voice to talk on the telephone or do much activity past walking from one room to another on the main floor of the house. Trade-offs ensue.
Attitude is alot of it post op. On the day after my cancer surgery. The surgeon and his team came in. He sat down and began to discuss certain aspects of my surgery.
He was concerned, because at that time, this infomation really didn't mean much to me. He said, "Why are you not responding to any of this I am telling you?" "You look depressed" is what he told me. He planted an HRT patch on me thinking my reaction was caused from the instant menopause. It may have been. I also remember in those early days, not asking for anything to be done. I know I didn't communicate with the nurses when they came in . I couldn't have cared less about anything. I didn't even get worked up over going for 8 days with no food or water.
But, I think it might have been the fact I was on a morphine pump, I was in alot of pain, I was zoned and really his words were not sinking in. I guess it was also about day 3 or 4 when I started to complain a bit (I wanted my damn hair washed and combed) that he was happy.
Only in the hospital can you get to the point of complaining and it makes a man smile.
If in your special world all patients are like me, then there's a tour guide named Virgil showing some other guy around arriving any minute now...
;)
I remember one of my very first patients, seventeen years ago. The patient had refused a colostomy or treatment for the cancer and when I became acquainted with them the tumor had eaten through the pelvis and become an open, necrotic, constantly draining ulcerative mass. The poor patients pain must have been incredible. Their doctor prescribed morphine tablets in huge quantities, providing the means if the patient had decided they couldn't go on. But they never did and ended up dying a slow, horrible death.
ANON #2 - I'm one of those patients who thought a colostomy would be the worst possible outcome in a 42 year old woman without cancer. But I had been reassured that I only had a 5% chance of waking up in the recovery room with a permanent stoma so I signed the consent form. Well, I fell in that 5% and after a few bumpy weeks I made the adjustment. Now I can't imagine my life any other way and wonder what all of the fuss was about. Thank God for surgeons who do their very best for the best possible outcome.
Dr. Schwab, may I suggest something? Of course all patients are different, as are their circumstances, but as a survivor of an unplanned colostomy--a situation complicated by the fact that I wasn't suffering from any bowel disease or symptoms, so I didn't even get to feel relieved that that was over--I'll tell you what worked best for me. A lot of people kept saying to me, "Everyone freaks out about this, and everyone learns to deal with it." That went more or less in one of my ears and out the other. Then I got The World's Best WOC Nurse, who talked to me for a while, got a sense of who I am, and then looked me in the eye and said, "Of course it's bullshit. A lot of people would rather die than have a colostomy and they do. A lot of people never learn to deal with it, never learn to care for it properly. However, you will." It was something like 50% expression of confidence in me, and 50% commitment to getting me there on her part. It did what it was intended to do.
I will only add that I learned to be amazed at how many nurses don't know how to deal with the practical matters of ostomy appliances, especially with those of us who are not elderly and are perfectly ambulatory. I spent 5 days on a med-surg floor several months after my colostomy, and my nurses kept 1) insisting on assisting me with draining the thing and 2) not doing it right. The WOC nurse told me that she thought it was because most nurses don't deal with ambulatory ostomy patients who have, ahem, higher standards of personal hygiene than are considered acceptable in your average nursing home. Lord, does my heart break for those nursing home patients.
anonymous: good points, all. I told my patients that on one will be as good at managing it -- not me, not any nurse -- as you will become. People figure out what works best for them. In my community, for a long time we were lucky enough to have an ostomy nurse who was an ostomate herself. That was great. Even still, it wouldn't be long before a patient was telling HER how they preferred to do things.
I'll look into it. But first I have to look up "apocryphal".
I frequently teach new colostomy patients (and their spouses) how to manage their colostomies, and it's a pretty rewarding experience for me. I remember in nursing school where we students each identified one thing that we thought we just couldn't live with. My buddy stated adamantly that if she "ever had to get a colostomy" she would shoot herself. For me it was Meniere's Disease. I ended up getting Meniere's, dang it. (And so I hope she doesn't have a colostomy...)
Hi! I've been reading your blog from the beginning..Thank you for your wonderful work! Keep up the good work.
Accounts of such litigation are not apochryphal. Some years ago, I defended a family practitioner who was sued, along with a GI consultant and others, for failing to recommend/talk the patient into a colectomy & ileostomy. Medical management quickly relieved acute manifestations of her ulcerative colitis and kept her symptom-free for long periods (3 brief flare-ups in 4 yrs), but she maintained they should have pushed definitive surgical intervention at the time of her 2nd flare-up, thereby averting a 3rd episode a year later.
Dr Sid, can you provide a list of famous people who have have colostomies? It might be more helpful than telling patients that people who say that they would rather die than getting on, do.
jb: I'm not sure I get the final phrase of your question. If you have inferred that I tell potential ostomy patients about those who refuse and die, I never did or would. Likewise, the subject of my post was an aspect of informed consent, as opposed to what you seem to have derived. Nevertheless, here's a list I got from a recent ostomy site. In my practice, I usually mentioned Fred Astaire, the Queen Mum, and Rolf Benirshke.
Annie(UK) - senior solicitor (employment law)
· Paul Ashley - management consultant
· Fred Astaire - actor/dancer
· Barbara Barrie - actress
· Allan Bawell - drywall hanger
· Rolf Benirschke - professional US football player/game show host/ConvaTec spokesperson
· Napoleon Bonaparte - world leader and military conqueror
· Carol Browning - executive assistant
· Marvin Bush - financial advisor and son of former US president
· Crusher218 - fire engineer and member of the San Diego Urban Search and Rescue Team
(heavy rescue team)
· Earl/ Dutch retired Air Force officer with 30 years of service in WW II, Korea and
Vietnam
· Gerry Duquette - retired, former director of environmental services at long term health care facilities
· Bill Foy - retired air traffic controller
· Gary in Maine - ship captain
· Al Geiberger - professional golfer
· Serv Gonsalves - Director, Computer Operations & Networks
· Steve Haith - analyst/programmer
· Bob Hope - entertainer/comedian/actor
· Irene - university resource center director
· Yale Jacobson - district manager
· Robert James - I.T. Consultant
· Renay Jarrell - self employed Auto Cad designer
· Bob Lee - police sergeant
· Tip O’Neil - US Speaker of the House and Ambassador to Ireland
· Rene Marinelli - customer service manager for a large medical billing firm
· Kevin McHugh - owner of research consulting company-McQ Research Services, coordinator of the CCFC IBD Research Network, educational/inspirational speaker, etc.
· William Powell - actor
· Queen Mum (colostomy since 1966)- British royal
· Jim Rice - computer systems analyst
· Lori Robb - volunteer with disabled people
· Suzanne Rosenthal - CCFA founder
· Sam (former ileostomate) - marketing management and public guitar player with an ostomy
· Crystal Scotti - legal transcriber and proofreader
· Shaz - government worker, State Housing Dept in Western Australia
· Reilly Sheffield - kindergartner
· Red Skelton - comedian
· Barbara Skoglund - government communicator
· Ed Sullivan - TV host
· Walt - dispatcher for a rural electric co-op
· Carl White - lawyer-in-house counsel for a real estate title insurance company
· Loretta Young - actress
· YTS - retired meteorologist
·
I was diagnosed with ulcerative colitis back in 1985. My disease was successfully managed with azulfidine for almost 20 years. It got to be a routine: Coloscopy each September/October so the pathology report would be back in time to decide on how much $$$ to put in my health care spending account for the coming year.
That all ended three years ago. The initial pathology came back "normal": Low grade dysplasia, no need for surgery. What I didn't know is that the sample were also sent to the UCLA pathology team for a second opinion. So I was surprised with a second result came back in January saying "high grade dysplasia found, total colectomy needed". So much for being able to plan this financially!
Given the conflicting results I wanted a second opinion, so I went in to see Dr. Tarjan at Cedars-Sinai, who it seems is The Man when it comes to this stuff.
After looking at the pathology and hearing my family history (father had colon cancer, mother two different types of breast cancer then lung cancer much later), he sided emphatically with the UCLA report. (I got the impression he was wondering what the first bunch of pathologists had been smoking.)
So the time had come for surgery. I asked if this could wait until summer and I was told it could, but no longer. I used the time I had to lose weight because I figured less belly fat would make life easier for my surgeon and then for me. Five months and 45 pounds later (down to 210), I had a total colectomy with ileoanal anastomosis.
I nearly ended up in 2-3% that cannot be reattached because I'm apparently built "long" inside. (My kidneys being twice normal size due to PKD probably doesn't help.) As it was the procedure was difficult and took well over six hours for a surgeon that usually does it in four. I'm also glad I didn't opt for the laparoscopic version because I'm sure they would have had to convert to an open procedure.
Past cholecystectomy experience taught me the virtue of getting and staying ambulatory. I quickly settled in to a routine of walking the entire floor of Cedars once every four hours, then twice, then three times. The only really rough time was getting my gut restarted - two days of ileus made me absolutely miserable and was without doubt the worst part of the whole thing.
I was doing so well that I ended up leaving the hospital too soon. On the second day at home I started losing fluid rapidly through every available orifice. This led to an emergency readmit for IV fluids. The only place they could find a vein was in the side of my index finger. I'm sure getting the needle in hurt like a son of a bitch, but by then I was so euphoric from fluid loss (over 15 lbs in four hours) I didn't even notice it. It also scared my wife more than anything that had happened up to that point.
Of course I had a temporary ileostomy at this point. Aside from some worry about how full it could get without coming loose (answer: very full indeed) I had little trouble adjusting to it and I can easily see how people could tolerate this indefinitely. My take on this is that everyone needs to figure out the routine that works for them. For me changing the thing in the shower worked best, and as I recall the suggestion to do that first came from one of the residents, not a nurse.
In any case, a couple of months later I had an uneventful takedown procedure and at this point I'm basically back to where I was before the surgery.
So: Attitude is important, but active participation in your own care was the key for me at least. My surgeon told me that had I not lost the weight I'd be wearing a bag today. I don't really know how vital dragging myself out of that bed was, but I think it helped. And having someone (my wife) help me through it at all was invaluable. I honestly don't know how people who are alone in life get through this.
Dr Sid, thanks for the list.
I never meant to imply that you (or I) would ever snark at our patients like that. I was referring to the Anon 2/9 6:27 a.m. comment, who quoted "The World's Best WOC Nurse" as saying, "A lot of people would rather die than have a colostomy and they do."
Sorry for any misunderstanding.
jb: thanks for the clarification. pas de problemmo.
jb, I am anonymous with TWBWOCN.
If I understand you correctly, you seem to think that people who face having a colostomy--or those of us who just wake up with them, not having already faced it before hand--have no sources of information or thoughts about the subject other than what the doctor says in the consent conversation. You think we come to this as mental virgins? That we know, or think we know, nothing except what you tell us? C'mon.
In my case--which I do not assume is "typical," I don't know what "typical" is--I put forth the opinion that "everybody learns to deal with it" sounds like bullshit. Hell, I know people who can't deal with getting wrinkles and go off the deep end. So, instead of telling me that that's incorrect, and that in reality every ostomate is a sane, resilient, practical person and I'm just misinformed, my WOC nurse conceded the point while reminding me that I don't have to be in that group. I thought it was a nice piece of patient "manipulation," and still do. Hell, I'd learn to be a nice functional little ostomate just to make my bitchin' nurse happy. At least she took me seriously and didn't try to sugarcoat everything.
What would you have done? Given me a list of celebs? You want to know how much I care about the Queen Mum's colostomy? It would involve references to shit not given, but if you aren't an ostomate you might not understand "giving a shit" jokes the way I do.
Dr. S. -- Just stumbled onto this site. I had APR surgery for cancer 5 years ago (yes, I've reached the holy grail of 5 years!) I've always yearned to know what it's like on the OTHER side of the knife, to do such a surgery.
Question: what is your opinion/position on irrigation for sigmoid/descending colostomies?
Very, very intriguing blog, you write well.
blogsnooper: thanks for the kind words, and congrats on your success. To irrigate or not is stricly a matter of what works best for the individual. Irrigation is a little too "intimate" for some people, but has the advantage of making it move when you choose rather than when it chooses. People with "well-trained" colostomies who irrigate can often get along without a bag at all, or just a small "security pouch." I think if I had one, I'd irrigate. Many of my patients tried it both ways and ended up not irrigating. So, as I said, it's just about what fits best with individual feelings.
Dr. S. -- (I'm having all sorts of hell replying to this thread -- forgive me if this is the THIRD time this tiresome post appears) Thank you for your response re irrigation. I've been doing this procedure since I finished treatment (6 fun-filled months! I can now add the ability to wash my hair while wearing a PICC line in one arm to my Life List of Skills.)
Irrigation changed my quality of life dramatically, and literally overnight. I do peer-couselling pre and post-op for colostomates and am always astonished at how few [good candidates, too] want to try it. Bit as yous say, it may be too Intimate' for many. I like the term 'intimate'. Nicer than 'creeped out'.
Another question: in your experience, are there any negative side-effects associated with long-term irrigation? Such as 'bowel stretching', electrolyte imbalance, loss of bowel motility and impairment of the immune system due to unnatural loss of friendly colon bacteria? I've heard all of these theories.
I'm not about to stop irrigation -- to be frank, if it means I don't have to wear bags, I don't care what mayhem I may be causing down there -- but I'm curious to get a surgeon's opinion.
I know many people who've irrigated forever. I'm unaware of any deleterious effects (it's possible to get overly agressive and cause damage, just as it would be with a careless enema. As long as you provide enough fiber to create solid stool that moves its way to the south end, I don't know of any problems.
I stumbled on this looking for info on a colostomy takedown. I went in to the ER 8 weeks ago for abdominal pain. They diagnosed ruptured appendix. They went in and found a healthy appendix in a pool of pus. My colon perforated from diverticulitis and they removed 5" on my descending colon. I have it reversed this week. Im trying to understand how the process works. Anyway - interesting article - and if anyone refuses a colostomy they are not thinking it through.
I woke up from appendix surgery with one and was quite shocked. Even when they said it was temporary I was freaked out. But after I got home and figured out how it worked - its not worth dying over I can assure you. Thankfully I am cancer free.
Thanks for your article and if you can explain how the put the colon back together that would be great. Im trying to imagine how the stapler works.
there are several stapling techniques using different type staplers. It depends on how far into the pelvis is the distal end. If you look here you'll see why I like hand-sewing when I can. But a hookup deep in the pelvis is ideal for staplers. Here is a diagram that shows one technique. Imagine the left side of the image is the rectum; ie, the stapler inserted through the anus, to bring down and connect to the upper end (the colostomy you currently have.)
I know you are all serious doctors, but I am the daughter of an ostomy patient. My family does think that this was a mistake for her, but as one of you mentioned, a permanant stoma is just there and there is nothing to do about it!
I am writing a blog about helping my mom. Here it is: http://helpingout.wordpress.com/
Warning, I am trying to see the lighter side of this!
I'm a 30 year survivor of ulcerative colitis....and I'd be one of the people who WOULD say, "No Frickin' Way!" to a colostomy if they said I've have to have one. I've fought like a dog these last 30 years to NOT have go through that. I know people who've had ostomies. They tell me they're just trading in one set of problems for another. I find the idea of wearing an ostomy bag repulsive. I'm not weird or anything, just a normal person who thinks the idea of wearing an ostomy bag is the most horrible thing that could happen to anyone. I'm hoping and praying my UC never gets to that point, because I'd say NO and I wouldn't change my mind.
It isn't bad at all and isn't even all that unattractive. I have one and it is one of those things that one gets used to and you all would be surprised at how accepting the opposite sex is of it.
It can't be helped, I would be dead now from sepsis if I didn't do it. Yes, I cried and was very upset about it at first. Eventually, I came around and never feel I did the wrong thing.
The hardest part is being intimate with someone new. One never knows how they will view such a hack job that a colostomy appears to the unaccustomed. Other than that, no one ever knows.
I agree entirely with the 30yo with ulcerative colitis.
I am in my late 20s, single, into partying and casual relationships and very sporty. I have been told that an upcoming surgery that I will have (to remove cancer) will leave me with a permanent colostomy. As far as I'm concerned, there is no well in hell that I am going to consent. Who at my age wants to end up being a shit bag attached to a body for the rest of your life?
I'm happy with my life so far and I'm not prepared for the drastic reduction in quality of life that having a bag entails. It's funny, everyone I know of or who have interacted with who has a bag says 'it's not that bad' ie what they're not saying is that it's shit (literally and figuratively) but they put up with it. Oh sure you might be able to go hiking, swimming, horse riding, skiing etc. Big deal - how much preparation do you need to do so that you can do all those things? Having to carry spare bags, glue etc. on you all the time - how fun is that!? It's not like you can just think to yourself - I need to go to the bathroom but I'm just going to hold on until I'm busting because I'm busy at the moment. Bags do burst and leak (yeah, go on about the fantastic supplies there are these days as much as you want - the reality is that none of them are foolproof). Mmm, shit dribbling down your front - that's nice for everyone around you, isn't it!
I know that if I met someone I was interested in romatically and found out they had a colostomy, that's it - I wouldn't want to touch them with a barge pole. I'm not saying I wouldn't want to know them - just that I wouldn't want physical contact with them. And I'm not prepared to have to constantly watch what I eat, spend hours in a bathroom emptying the stinky slops or fart at inopportune moments or have to throw out all my skin tight, slinky party clothes, boob tubes and bikinis.
This surgeon's post is representative of the majority of surgeon's opinions - ie no consideration for quality of life issues, especially where younger patients are concerned. All a surgeon sees is a tumour with a body attached - they don't give a shit (excuse the pun) what you have to deal with afterwards as a result of their butchery.
I've made my choice and I'm at peace with it. It's a shame that noone has done enough research to come up with acceptable alternatives.
anonymous: thank you for your thoughts on this. It's a difficult decision. It appears, from what you've said, that you are far from fully informed, and that's too bad.
On the other hand, I'm inclined to think this isn't a "real" comment from a "real" person. I was inclined to delete it because I'd guess I'm right. But I'll leave it because it's an example of what actual people might think who have poor knowledge of the options.
It's also the case that my post here was about cancer and not ulcerative colitis, about which there are even more complex issues. Finally, I'd not be inclined to give general credence to one who thinks she knows what "the majority of surgeons" think. But that's just me.
Dr Schwab, thanks for your blog.
Could you please explain why you think the last 'anonymous' is mis-informed? I'm in my mid-20s faced with the prospect of a bag and need those myths properly expelled from my mind.
Well, first off the commenter suggests that all surgeons care about is butchery, which is a bit off-putting. And I guess it's how one sees it. No one would choose an ostomy if there were a better option. But when it's done, it's for a reason: in the case of UC, I never had a patient say it wasn't worth it, because they'd been so sick for so long they'd forgotten what well feels like.
The problems the commenter mentions are real, but he/she puts a very negative spin on them all. People get very good at managing their ostomies -- better than their docs, their ostomy nurses. It becomes a part of life; not a pleasant one, but necessary, manageable, and not limiting in any way.
I'd suggest you look at websites for ostomates. Like this or this.
To the person in their 20s - if you're facing a colostomy due to cancer, PLEASE get multiple opinions rather than just going ahead with the APR.
If I had stuck with the original surgeon I saw when I was first diagnosed, I would have ended up with a bag unnecessarily. The surgeon was adamant that I would have to 'get used' to having a bag & that was that. As far as I was concerned, that was not an acceptable prospect for a young woman. As it was, it took me 3 more goes to find the right surgeon for me & I am now both bag-free & cancer free 2 yrs later.
To be honest, avoiding a bag became my primary goal over & above curing the cancer - but I'm lucky & very grateful that everything has worked out (so far - touch wood!). I have both my oncologist & my awesome surgeon to thank for this.
Here are a few things I learnt along the way:
* if you have a low tumour, 6 weeks of neoadjuvant chemoradiation is non-negotiable. I had xeloda, 5 weeks of radiation to the pelvic region then 1 week of radiation targeted to the tumour (that’s radiation + chemo Monday-Friday with weekends off). There are studies now showing that the addition of Avastin to chemorad improves response rates even more (in some cases, it up to doubles the chance of a near-complete or complete response). Also, xeloda is slightly more effective than 5FU.
* you MUST find yourself a board certified, specialist colorectal surgeon. Studies show that hospitals where high rates of colorectal cancer are performed have lower rates of permanent colostomies. Interestingly, the first surgeon that I saw who told me I'd HAVE to have a bag was a general surgeon & wasn't board certified.
* you also need to find a progressive oncologist who doesn't simply stick with the 'standard' approach but will go the extra mile if necessary. On top of the neoadjuvant chemorad, I had additional full strength xeloda before surgery.
* studies show that the optimum time between ending chemorad & having surgery is between 8-12 weeks. The chemorad keeps working during this break so if you have surgery sooner, the chemo hasn't had the chance to finish working.
* your response to chemorad is critical. Before any treatment, I was Stage III with one suspicious enlarged node. I had a near complete response to chemorad + chemo & was down staged. When you have such a good response to chemorad, the chance of you still having positive nodes (assuming there were any to begin with - enlarged nodes do not guarantee that they are cancerous, they may just be inflamed) is greatly reduced. From memory, there's only about a 5% chance of positive nodes turning up in final pathology if you have had a complete response to chemorad.
* you need to be your own advocate. As Dr Schwab points out, some people adapt to having a bag. But if you want to give yourself the best possible chance of avoiding that outcome, then you need to understand beforehand what the alternatives are & decide whether you can accept the possibility of an increased risk of recurrence. An oldie who just wants the safest way may accept radical surgery without question. But I knew I was WAY too young to have to make changes to my life because of a bag that I could have avoided. I took the risk & accepted a slightly greater risk of recurrence. I found an oncologist who was prepared to provide additional treatment to give me the best chance of having the surgery I wanted, then when I had a good response, I found a surgeon who accepted that I'm ultimately the person who decides what is best for me & what I could live with.
cont. from above:
My choice was to do everything possible to avoid the bag, even if it meant taking a risk that the cancer would return. So I had an excision rather than radical surgery. I didn't even have to have a temporary bag (phew!). Yes, I would have had to have a temporary bag if I hadn't had such a good response to chemorad. Yes, the surgeon who I first saw (and the next couple after that) would still have performed an APR, even despite my good response to the chemorad. But I did have a good response & I had a great oncologist & a great surgeon who respected me & my decision.
I did, of course, have to have adjuvant chemo - xeloda with oxaliplatin (the oxy SUCKED the big one but the resultant neuropathy did wear off with time). I also need more regular follow up (scans, blood work etc.) than if I’d just had an APR – small price to pay though!
I'm only mid 30s & I admit I am pretty vain about my appearance so that played its part in my decision. I guess it might have been different if I was a guy or much older & 'over the hill'. But I have never regretted my decision & like I said, I'm 2 years NED. According to my doctors, that is a great sign as most recurrences (over 80%) occur within the first 2 years.
I don't mean to 'bag' having a bag but I want people to understand that when you have a low tumour, you need to make absolutely sure you get the best possible treatment. Don't just accept the first opinion you get!
ps (sorry Dr Schwab, I will shut up after this ;-)
I should note I have also made lifestyle changes since being diagnosed. I now eat a small protion of meat only once a week (it has been recommended that consumption of red meat should be restricted to no more than 500g per week - any more increases the risk of colorectal cancer), fish once a week and all remaining meals are vegetarian. I eat mostly organic, locally produced (and where possible, home grown) produce. I avoid highly processed foods. I don't buy into the 'sugar feeds cancer' myth but I do manage what I eat to avoid fluctuations in blood sugar levels and I cut out simple sugars as much as possible anyway.
I exercise every day, without fail. Regular exercise has been shown to decrease the risk of a recurrence of colon cancer by up to 50%. It hasn't been shown to have the same impact with rectal cancer but it certainly can't do any harm!
I had my vitamin d levels checked (colorectal cancer patients have been shown to have low levels of vit d) and now take regular supplements of vit d + calcium. I am also on mini-aspirin (aspirin has been shown to decrease the risk of colorectal cancer).
I was told to exercise regularly but the other changes, supplements and addition of aspirin are as a result of my own research. I asked for the vitamin d test (it's not usually a standard test but easy enough to add on when you're getting blood sucked out of you regularly anyway) and I asked about the aspirin.
Here's a good website with more info on colorectal cancer: fightcolorectalcancer.org/
A few interesting alternatives to colostomy:
http://blogs.discovermagazine.com/discoblog/2009/11/19/so-long-colostomy-bag-british-man-gets-remote-controlled-sphincter/
http://www.bowelcancerresearch.org/changing_lives/article.php?article=7
http://clinicaltrials.gov/ct2/show/NCT00059891
http://www.bowelcanceruk.org.uk/home/media-centre/latest-news/saving-my-arse
anonymous: thanks for your well-considered comments. My intent, in this quite old post, was to reassure those who need ostomies that they may not be as bad as they think. NEED is the operative (as it were) word. When it can be safely avoided, it should be.
I can't believe how uninformed some people are about life with an ostomy. I didn't have a choice, I went from ulcerative colitis to toxic megacolon and emergency surgery in 2 weeks. There are LOTS of people in their 20s (and far younger) who are living life to the fullest with their ostomy and partying, wearing tight clothes etc. I suggest checking out http://www.uncoverostomy.com and http://www.nogutsknowglory.com. The first website is from a 21 year old model, actress and university student with an ostomy and the second is a young man who just finished climbing the 7 highest summits in the world by conquering Mt Everest in May. There are ostomates who are race car drivers, police officers, black belts, compete in body building (yep with the skimpy little briefs and yep, ostomates who regularly wear bikinis. They are living life to the fullest and like me are trying to shatter the stigmas associated with these much misunderstood surgeries.
There are many people on Shaz's board (http://www.ostomates.org) and the UOAA discussion forum (http://www.uoaa.org) who have resisted having an ostomy for MANY years and finally did and they now wonder why they didn't do it a long time ago as they've been able to return to an active life and do things they could never do when they had ulcerative colitis.
Oh yeah, and they get married and have kids. I didn't choose to have an ostomy, but I celebrate each year the anniversary of my ostomy surgery, even though I nearly died of complications afterwards. I'm still here, and I am doing my best to ensure these stigmas are shattered and people see there is life after ostomy surgery.
I even blog about it, and I too use humor. Yes, I have bad moments, but the good times far exceed the bad and I've met many wonderful people in the ostomate community.
http://www.muggins7.wordpress.com
Thanks for that excellent comment.
I jusst came across this post and so glad I did. I had a colonoscopy done 2 weeks ago and was told I likely have FAP after 100 polyps were found. My pathology says the large one in my rectum has sever dysplasia (sp) and it all has to come out. Well that doesn't FLY with me. The top of the line surgeon I went to who I booked surgery wtih and now am going to cancel it Monday said I might have a jpouch or a stoma. Well I only was going to sign up for the IRA, not the other 2. I don't want it, I rather risk it and I don't get why I can't have the large polyp removed and see if it comes back as well as burn the smaller ones out.
I am not seeing the genetic doctor until after my surgery and everyone says I am running out of time, I will be dead in 2 years. How can you say it is FAP when nobody else in my family has it and I haven't been tested for the gene. Well I am not ok with the surgery options presented to me. I don't get why chemo can't get some of it under control. If anyone wants to read my blog and get in touch, please do.
http://vanessaic.wordpress.com/
I guess it beats the alternative (being dead), but honestly, hearing about all these other people doesn't make it any less of a drag. The worst part is the incessant ITCHING under the appliance! "Misery Loves Company" really doesn't apply here...
Well said, Mr Befumo.
Sorry doc, but I'm in my 30's and was given an ileostomy during an emergency surgery. It was not expected and when I woke up and saw it, I wished I had died instead. I still do. It negatively impacts my life in ways I never could have imagined, and it has been extremely hard to find a romantic partner who can get over the "gross factor." I have had my ostomy for a year now, and I am no closer to accepting it than I was when I first woke up from surgery with it. Please don't lie to your patients and act as though this were nothing and they should just suck it up and deal. It isn't nothing. If I cannot be reversed soon and have a decent quality of life afterwards then I will take my own life. The ostomate life I have now is nothing short of torture. Please be aware of this when making recommendations to your patients.
In life or death situations, no surgeon can be omniscient. I have to assume yours chose to save your life instead of letting you die. I infer you're young. Hard to imagine, unless specifically told not to, that any surgeon would have chosen differently. I also assume you had emergency removal of your entire colon, rectum, and anus, although that's unusual for emergency surgery. If you have a remaining anus, it's not impossible to reestablish continuity.
I don't think there's anything in my post here that's a lie. And I'm well aware that ostomies are life-changing. You have reason to be angry at the hand life dealt you. You have no reason to be angry with me. In any case, I wish you well.
I was thinking a lot about ileostomy and colostomy for last few days. I believe it's fair to let people have a choice if It comes to something like this. Some people can imagine living like this and some may not. I wouldn't have mentally enought strengh to handle this. I'm dealing alredy with so many mental health problems, visiting psychiatrist regullarly, get my medications, regular psychotherapy and I stuggle with my self-acceptance even without having ileostomy. Thought that people can normally function is not an argument for someone who would mentally not handle it. Life matters but sometimes the quality of the life may become so low to one individual that death seems to be a relief in comparison. I would never recommend refusing this life-saving surgery to anyone, but If someone is certain about the decission he's about to make I would totally respect that.
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