CSN Login
Members Online: 7

You are here

Met With The Surgeon Yesterday, Off Into Hiding I go...

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

My complete lack of both time and sense of direction was in full swing yesterday. Up at 4 AM for a 10:45 appointment at Yale New Haven which I had somehow convinced myself was at least an hour away with traffic - so off we went with my bag of bottled water and note books full of questions and fears for our "Thelma & Louise" style road trip. Our road trip took exactly 21 minutes - we had three hours to kill. I need another colonoscopy but this time between my ears. 

The surgeon was more than I could have hoped for, gentle, kind and reassuring. I liked him immediately as did Sean - who ended up hugging him when the consult was over.
 
So here's the skinny. The entire sigmoid colon comes out this scar tissue I have from a past surgery is going to make a Laparoscopic approach a challenge but he's going to try, if he can't it'll be an open procedure. My high AIC which is 12 (A1C basically means an overall average of your blood sugar levels) so my A1C translates to an average of 300 which isn't good. He wants me to get it down to at least an 8.5 which is easier said then done. Diabetes means a longer healing process and an increased risk for complications like my internal neuropathy making attachment and or re section problematic.
 
If he can make a new attachment to the rectum and avoid an ostomy there's a good chance the nerve damage would make this procedure impossible - and even if it does take, chances are I would be incontinent. But I should note that he told us there's only a 10% chance I would need a bag so at least that's encouraging - and if I do it would be temporary and could be reversed but again this doesn't mean I would be free of complications (see above)
 
Those of you who have checked my past posts about my terror when it comes to catheters know this is a huge issue for me and it was a major relief to hear him promise me that when it's removed I'll be given morphine or dilaudid and the same should they need to re-catheterize me, which trust me they will. Anyway that gives me tremendous piece of mind.
 
Surgery should take 4-7 hours and I can expect a 4-6 day hospital stay but longer if he does an open surgery. The date I go in is November 14th and I have a bunch of tests to take care of and the anesthesiologist to meet with prior.
 
I had forgotten to ask him a few questions and he was good enough to call me back last night. I wanted to know what to expect if I didn't have the surgery - not a pretty picture of which I'll spare you the gory details because you already know what they are. So I have no choice and am in for a world of hurt but at least it's with a remarkable talented guy at the helm. Between you and me, I would rather do anything and I mean anything else.
 
Peter 
abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

Somehow we manage.  Keep yourself as busy and physicallly active as you can until surgery; you want to be in the best shape possible.  Pain control is usually good - I can't do opioids (I itch more than the pain) but I get an epidural which has worked wonders for me (and with another surgery coming up in February, I will request again.)  (Note: my last surgery was over 10 hours because of scar tissue.)

You have all of us here holding your hand, and we'll do what we can to support you.

Alice

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

That was truly one of the loveliest things said me in quite some time. I'll be holding all of your hands too. Funny you should mention opioids making you itchy they have the same effect on me but the hydrocodone I take for neuropathy gives me such relief from the pain that the trade off is worth it. I think I'll ask about an epidural too, couldn't hurt (yuk yuk) Thank you for the great advice and I'll stay as busy as I can and walk as much as I can prior to surgery. Which speaking of best of luck on your up coming one in Feb, I hope I 'll be seeing that cute little birdie of yours (chickadee?) many times before that.

Peter 

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

That's not an automatic, you do have to request it, but BOY is it worth it!  I've had them for my last 2 (3?) surgeries, and they made a huge difference.  (Unlike the epidurals given to women in labor, you still have use of your legs and will be able to walk.)  I had mine for 5 days last time.  They started me with fentanyl, but I started to itch, so they just used one of the caine drugs after that (bipuvacaine) which worked well.  

Thanks!  I'll be looking for more support as my next surgery draws closer.  And the bird in my picture is a Bluebird that was on our feeder.

Alice

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

And I'm loving that the epidural works so well, tomorrow I'm calling to request one or at least learn more about it. The surgeon was talking to me about a Morphine drip and Dilaudid I was just looking for got the assurnace that pain will be well managed an epidural never came up, but I'll bring it up. It seems most everyone here has had numerous surgeries I wonder why that is, that's a stupid question I suppose because the answer must be that this pesky cancer comes back - ugh. In my case if I do get an ostomy of some type I'll have another surgery to reverse it so that I get and totally understand. I hope my cancer stays put but I guess only the shadow knows.

Alice I am sorry you have to have another one, it's scary and it hurts I do know this from experiance although this is the largest operation I've ever had - but please know I'll be here cheering you on ( literally, I have these huge pom poms and do a good deal of cheering on) and at 60 I'm quite accomplished at it. I'll also be wishing you well and hoping for a speedy and comfy recovery for both of us, thanks again - Peter

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm so glad you like the surgeon. They should make you feel like you have one less worry because they're going to handle it no problem. Mine made me feel very safe in his hands. That's so important. He's very straightforward and explains everything in language I can understand without sounding patronizing. The day I had my resection surgery he got my daughter's cell phone number so he could call her directly to let her know how it went, which he did. My husband was working out of town and unable to be reached. 

To me it's important to have someone in my corner who is confident. I don't need the fuzzy wuzzy soft touch. In fact, I find it annoying. My oncologist is also straight forward and I really like her.

So you're one step closer to getting better Peter. Thank goodness they're doing it rather quickly.

Jan

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

That's exactly how I felt - safe. Like your surgeon this guy spoke to me in a straightforward manner and with compassion. I never once felt pressured to wrap it up or spoken down to. It is moving fast isn't it? it seems like yesterday that I got the diagnosis, found this forum that very same day and logged on. It's going to be different but it's going to be ok - and you know that, that applies to us both, you nutty horse lady. Thanks for helping me feel better ~ Peter 

beaumontdave's picture
beaumontdave
Posts: 997
Joined: Aug 2013

My surgery was open, they took the sigmoid section out and stretched the remaining part down and resected. The main nerve concern the surgeon mentioned was that which deals with erection, which was concerning until the wife kind of bumped me awake a couple weeks after, and I got to celebrate that which I hadn't lost. The one lasting effect was that I don't ejaculate, it goes the other way to the bladder, something termed a retrograde emission. The other reasons for the open surgery included removing a swollen appendix, and fixing a bellybutton hernia.  So there's my experience, with an incision from button to bladder, I got released a day earlier then scheduled [five days], and it took some months to get any real regular bowel movement. The removal of the sigmoid section made hitting the bathroom a more immediate thing, and the output bounced from liquid to hard to pass for quite a while. The epidural had me awake and comfortable soon after the colectomy, and I felt fine for quite a while. I have a high tolerance for opoid medications, so when I asked for something, they brought it, but then brought a heart moniter that sounds an alarm if your beats drop under 50. That thing kept me awake and miserable the whole first night, so be careful what you ask for. Best of luck to you, and a quick recovery, as well.............................................Dave

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Thanks for being so honest and sharing you're story. I'm so totally glad for you that you were able to regain erectile function. I haven't been as lucky, nerve damage from the MS and circulation issues from the diabetes have left me as Rodney Dangerfield liked to say "jealous of stiff wind" and for a long time this alone totally eroded my self esteem - now I'm older and wiser and no disease nor the scars they leave behind define me. My husband of 30 years isn't complaining and neither am I.  

Like you I have a high opioid tolerance and a few folks here have mentioned an epidural the Doc promised to keep me comfortable so I don't care what they do or load me up with as long as it's tolerable. I liked this guy right off the bat, he's won my trust so I'm good (knocks on wood) I do worry about that nerve damage that would render me incontinent, if I had to choose between that and a colostomy, I'll take the colostomy. I drip pee in front and wear whats called a guard and that I can deal with, but poopy pants? no thank you.
 
I'm glad you seem to have had a relatively smooth experience and were even home in 5 days, by 5 days I'll be chomping at the bit to get home to my bed and dogs, so with a little luck I won't have any complications. Thanks again Dave this helps it really does. ..Peter 
plsletitrain
Posts: 253
Joined: Jul 2017

I'm glad you're confident with your surgeon.  With all the physical and mental challenge that we have to face, the last thing you'd want to worry about is if your surgeon does it right.  So to me, putting your trust in your surgeon is one of the biggest factors to a successful mental preparation.  It would be the perfect tandem: you and your body physically and mentally ready to lie on that operating table and him being competent enough to do the job.  You'll come out just fine. :)

I just wanted to share my experience when I had my colectomy (please pardon me if I'm oversharing).  I think my case is an example of how being mentally prepared is very important. As I've mentioned before, mine was an emergency resection because the tumor was already blocking my colon (or somewhere inside) making it impossible for my waste to come out.  My surgeon said had I delayed it for another day, it would have erupted already causing my waste to poison me inside.  So I was prepped for the surgery.  But my surgeon came 3 hours late.  I know, what's 3 hours right? But when you're in agony, and I meant intense pain, every second is hell.  I was lying on that operating table, all alone, with the pain just making me want to operate on myself already instead of waiting for the surgeon, and I did not have anyone to talk to.  For me this is the meaning of mental torture.  Having to wait there in agony, while reeling from the fact that just hours before that, I was given the news that I have cancer.  All I did was to pray and told myself, one at a time.  Do this surgery and think about that cancer stuff later. Literally my eyes were locked on the door waiting for my surgeon to finally arrive.  After 3 hours, he finally did.  I can't fault him though as he had other emergency surgeries that day.  

What I'm trying to say is, just think and believe that you'll do just fine (which I know you will because you have a great surgeon and you're a strong fella) and you will.  You'll be able to face any struggle when you believe and condition your mind that you can do it. We'll be thinking of you and praying for you to breeze through the surgery.  I also wish it would be laparoscopic but if it all goes down to open surgery, you'll still manage.  Take it easy and know that there are people (real and virtual) who care for you.

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Please don't think for a second that you're over sharing, when you're as frightened and messed up as I am which has nothing to do with my cancer it's my usual state of being - I jest. But that said your experience is critical for me to hear. Because even despite small differences and different out comes you've already been where I'm about to go - and just the fact that you're willing to talk to me give me a road map, and a map makes it easier to end up in the right place.It's harrowing to hear you had emergency surgery, the tumor I have has blocked most of the passageway which it what makes passing anything so rare of an occurrence and so minimal in output. I've read about this kind of agony the book The Fecal Man purse - A Survivors Guide To Colon Cancer. I've read some similar stories her on this very forum and of course my doctor and the surgeon have made me painfully aware that although a bowel rupture isn't a risk I face now it sure would be if I chicken out and postpone the surgery. Pain, searing, crazy, un Godly agony kind of pain, the kind if pain that's so surreal your mind can't process it, you can't  wrap your brain around changes you and it changes you forever. I don't know what you went through during those three hours that you waited and I don't want to know, not ever. But I do know that there is a level of pain that breaks you it reduces you to nothing.

You made it to the other side and I'm happy for you - truly I am. Thank's for the vote of confidence, it helps - Peter
Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

All in all it's sound promising, except for the sugar issue which I'm sure is a big concern.  So glad that you like the surgeon because that is so important.  My surgery left me with a temporary ileostomy for about 7 months and then had a reversal.  It's strange but you think that you can't go through all that they tell is going to happen, but you somehow always just muster up the courage to go forward.  It sounds like you have someone that cares about you very much right along your side and that it truly a blessing.  It's always good to have a loved one there.  My husband has been a rock through all of my surgeries.  You will have many questions that no doctor is ever going to tell you either, so just remember that we are always here and almost always someone has an answer.  We're here through all of it with you so you'll never be alone.  Prayers for a very successful surgery.

Kim

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

You're right the blood sugar is a challenge, there's nothing I can do about the internal nerve damage which is where the real issues for me are but that's the way it is. I have a very good endocrinologist and a really superb team who've been working with me for the past 7 years or so to get this damn diabetes under control. 

So many medications, the diet, an insulin pump which are usually used for type 1 diabetics, a hybrid insulin pump called a V-Go, lot's of non insulin injectable medications like Victoza and Byetta - interesting note on the Byetta, it's made from the saliva of a big lizard called a Gila monster and they don't kill them to get the saliva or I never would have taken it. Although it wasn't effective I had fun telling people that I was "mainlining lizard spit"  
Then of course enter the world of Insulin, there's an awful lot of different kind and like a well stocked bar I've tried them all - I'm currently on the most powerful one on the planet and still my blood sugar is off the charts. So what the surgeon wants me to accomplish in two weeks, and I totally understand why he want's to see an A1C of 8.5 or less but based on my experience I'm pretty sure it ain't gonna happen - although not for lack of trying.
 
Sorry to be all mopey and cranky, I appreciate that you took the time to reply and offer some genuine support, thank you Kim and I hope you're feeling well. - Peter 
Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

You have been through the ringer with all that you've gone through.  Yikes the lizard saliva would make me cringe but I'm sorry that didn't help either.  You are right, there are always new ads on TV about new mediations to try.  I'm praying that you can find one that will help.

Kim

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I need another colonoscopy but this time between my ears. 

If you can write something like this, you will be fine.  I laughed at this, which I needed.

You have selected a great doctor and you will soon be looking at this in the rear view mirror and moving on.  My major concern was a ostomy bag myself.  Like you, I was told in all likelihood I would not need one and on the off chance I did need one, it would be reversed.  At the time I was looking being told I had cancer, pretty big tumor, would probably need chemo and my concern was the ostomy.  

As to the catheter issue, I was shocked when I woke up and found thay I had one.  I was sure as h-ll no one mentioned that beforehand.  Pretty sure I would remember (I have been trained to put in catheters.)   It was not horrible when they took it out, but I was not a big fan.  In fact when I had a met to my lung and had to go in for surgery, my biggest concern was to have the surgeon not put in a catheter.  Not the possible pain.  Not that a piece of my lung was coming out.  But my catheter.  There was not a catheter.  But they did put in a chest tube.  I really got to specify no tubes of any kind if I ever have surgery again Laughing

Sounds like you have good knowledge of your diabetes and what you can do.  Pretty much everyone in my family on my maternal side are diabetics.  Type I and often from young ages.  They did pretty well overall with diet.  So at the risk of telling things you proabbly already know, and not meaning to be out of line, a bit of diet and exercise could help even with a couple of weeks to your surgery.  A quick thought -  it may even be worthwhile to hire a nutironist and trainer for a couple of weeks.  Getting ready for surgery and putting yourself in the best physical and emotional place you can be is paramount.  Even if means being a bit self-indulgent/selfish whatever phrase one would choose by splurging for a dietician/trainer to just be there for you.  Plus taking the onus of thinking about that aspect off your shoulders, and Sean's shoulders, a bit can't hurt.  

Something else to look into is hyperbaric treatments - I just checked Yale Hyperbarics .  Looks like they do not have it at Yale, but refer to others.  (Note:  I backtracked to check Yale and added the links, so some of the information which follows I wrote first, so it may be a bit redundant if you checked the links first.  Laughing)  It is approved for about 10 things under insurance - don't have the guide in front of me right now - but it includes things like burn treatment (including those from radiation treatments for cancer patients) and diabetic wound care at a certain level.  Basically you breath 100% oxygen in a hood for a period of time under pressure in a chamber.  Usually the only thing to do is cleaFoot in Mouthr your ears, like you do when in an airplane but in reverse since you would be effectively landing and then taking off.  Your blood sugar may  be a little high there though.  I think 300 is high end cut off, but again not checking the books right now.  Some doctors are familiar with hyperbarics, many are not.  But in Europe it is often used before surgery to help with blood flow and and recovery from surgery.  An important note - there are places out there where HBOT (Hyperbaric Oxygen Treatment) is used "off-label" by people who are spewing less than valid claims about HBOT.  Claims from curing everything from bunions to cancer.  There are legtitimate and proven uses for HBOT and some of the charlatans out there undermine it.  But wound care and healing are definate things where it can help.

By the end of November this whole surgery thing will start turning into a memory and story to tell.  Until then you will get anxious and go through a range of emotions.  I know I was in my gown ready to go into surgery and I really considered running out into the street (cold February day) to avoid it as it was about to happen.  Figured a psych evaluation at Bellvue would be easier to deal with.  Foot in Mouth   

As Alice said, a bunch of people here who have been through this are here for you to help you as you go through this.

 

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

"I know I was in my gown ready to go into surgery and I really considered running out into the street " 

 
And yet another horror story about these gowns the hospitals make you wear and into surgery no less. Well I can't say I blame you for wanting to run into the street. That would have been my reaction too. Hence, I'll be wearing an Alexis Carrington style Crimson Ball gown for my grande entrance into the surgery "Theater". Sure it's a little dated with those airplane wing sized shoulder pads and big ole sequins. And yes it's way too tight and cuts across the bust but it's over thirty years old for cryin' out loud!
 
Sorry I couldn't resist.
 
Chest tubes, I've heard of this torture and read about them too it makes me wince thinking about it, so I can't but I do think we should start a movement for tube free surgeries. It's remarkable what we humans endure to get well and to keep living. These days it's as if I can hear this clock clicking away and my heart racing at the same time, Surgery is a little more than two weeks away and I think as an act of defiance against what I don't know but I could be doing better, says the man told to avoid soda takes a swig of ginger ale. I'm not tempting fate I think I'm just ignoring her and at least it's sugar free. Please don't underestimate how much I value your input, advice and recommendations because I do, it's a magic pill for all this fear and apprehension that lasts a second or two but I'm happy to have it. I may not be a candidate for hyperbarics but I'm not shy about taking in all the kindness I can get a hold of and your posts always offer plenty of it with an extra helping on the side - so thanks for that.
 
Peter
abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

It looks so sad when it crushes! (Taffeta, Darling, taffeta!) Love your sense of humor.  My husband showed up for a post-op visit for his minor knee surgery wearing a Utilikilt.  He figured it would be easier for the dr to check him.  Dr walks in, sees D, stops, shakes head and laughs.  (He's gotten to know us.)

Keep smiling.  I love your attitude!

Alice

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

You know what Taffeta is, Marry me. Really Alice I'm smitten (my parent's named me Smitten, I changed it) I know when I see that little Blue Bird I'm going to experiance  something wonderful. David sounds really great, I toast the two of you. And now because the topic of the day seems to fabric I whisk you away to the late 70's and the TV show Hollywood Squares - remember when Paul Lynde was asked why Motorcycle riders wore leather? His response ( in my best paul lynde voice) Cuz Chiffon Wrinkles.

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

And remind me so much of my cousin (another David.)

Cool

Butt's picture
Butt
Posts: 318
Joined: May 2018

Pete, after they removed a part of my sigmoid colon my pooping got back to normal after 4 days. Yep, to be more specific it actually was the same time of the day I usually went.....

Subscribe to Comments for "Met With The Surgeon Yesterday, Off Into Hiding I go..."